Today is 2-15-2024. My husband has dementia. I feel like you were describing my life. No one knows what we go through. It IS lonely and we miss so much. Thank you for sharing. God bless you.
Your story brought me to tears. My dad and I cared for my mother for almost 12 years with Lewey Body Dementia with Parkinson’s. She became violent towards the end. We had to care for her at home because of the violence. Dad died in 1998, Mom died in 1999. A number of years ago I started coming down with the same symptoms my Mom had, got diagnosed 4 years ago. To spare my family the anguish of caring for another dementia family member I chose to enter a Veterans Assisted Living Facility. I am happy here and happy for my family that they understand why I did not want them to go through caregiving again. They visit me weekly and I have many friends here. I will pray for both you and your husband that you both receive God’s assistance very soon.❤❤
You are truly amazing. After caring for my dad who had vascular dementia, I have told my husband the same as you. If I come down with dementia, please just put me in a home. Do not burden yourself with having to go through the anguish of my care. Just come visit and we can have quality time that way.
My friend's father has dementia. His mom didn't want to send him to a home. He ended up beating her on the head and she died of her injuries. He's in a home now. This is no joke, dementia, when you need help you really need it.
Omg before you even finished introducing Sheila I was ballin crying! I'm an only child and my mom is progressively getting worse. Taking care of her is so overwhelming I have a crying session daily because she is so mean and cruel to me especially at sundown so my heart goes out to you! Thank you for sharing
My dad was diagnosed with Aggressive Dementia, and the doc told me to never turn my back on him. I didn't take it very serious the one day he flipped and long story short....I spent over 8 hours in the ER with a severe traumatic brain injury after he attacked me with a hammer. If your partner or family member is violent then NEVER underestimate what they can do. Be healthy, stay safe and many blessings.
I believe you completely and I am happy you are warning other caregivers. I am taking care (solo 24/7) of my 84 year old Mom who I love dearly but it has become very challenging. She has always had a narcissistic streak, been verbally abusive to others at times, but not violent. Now in mid to late stage Alzheimer's dementia she has become violent, slapping and hitting me when at her worst. Other times she's the nicest person you could meet. Our loved ones personalities change when they have dementia. The challenging part is you never know what is going on in their mind when having delusions and behavior changes rapidly. You have to be ready for anything. My Mom has also been going through the wandering phase for awhile now and will disappear in the amount of time you can quickly go to the bathroom. I now have to bring her in the bathroom with me to use the bathroom or shower. She snuck away "looking for her childhood home" that's a thousand miles away and got lost several times to the point the police became involved. Any dementia is a horrible disease and one many people do not have empathy for. They just don't want to deal with the person anymore. God bless all caregivers 🙏🙏.
My husband was diagnosed with vascular dementia in 2022. He also had several small strokes which led to the dementia. He was never violent or ever hurt me but he was always sad. He couldn’t accept what was happening to him . He was always strong and healthy , never sick , even worked for a year with help from his co workers. I was his caregiver and kept him home with me until he passed on January 7, 2024.
I so relate to Sheila. Although it was my mother (not my husband), it was terrible. She had Lewy Body Dementia. I am single. I kept her at home with me for as long as I could. Although my sweet mother was never violent, the 24/7 care was exhausting. I didn’t have help, and she didn’t qualify for home care; therefore, she and I struggled through it together until she fell in her bedroom, breaking a hip. She underwent successful surgery. Because she needed to go to rehab, I made that decision reluctantly. The only facility open in our area at that time (during Covid) was one that had been built in the 70s. The quality of care that is so often pervasive in these facilities caused me great concern. I was right to be concerned, but I wasn’t allowed in during Covid. She didn’t get physical therapy. By the end of the lockdown, it was clear to me that my dear mother had not received proper care. She was transferred to a different floor and although I visited several times weekly, she vegetated there until her death in April of 2022. I considered it a blessing that she didn’t know me or her surroundings near the end. My heart goes out to the families and loved ones who suffer through and with these horrible diseases.
I came upon this and I am going through a similar experience, my partner of 35 years has moderate Alzheimer's. She was diagnosed late as she refused to engage when she was clearly showing symptoms, retrospectively these were going on for probably 7 years. Her brain scan showed stage 3 dementia. She now no longer recognises me and has decided that I am a visitor, so I am in the guest room now. Her behaviour is so challenging for me with the imagined people coming and going, her long deceased parents staying here etc. I've just had surgery for kidney cancer and don't feel that I can DO this anymore. I'm starting tomorrow to research care homes for her.
I have a saying on my refrigerator I read daily , On my bad days I need you, on my good days I praise you, but every day I need you. Thank you Lord for being there for me.
😭 I am so sorry. I can really relate to your story. This happened to me too, only it was my 28-yeat-old daughter I had been caring for. It is a very long story. She is usually considerate and loving even though most of the time she does not realize I am her mother or know who she is. There have been a handful of violent episodes. One time she grabbed me by the throat, last time she got me on the ground and pummeled me. I ended up with 2 black eyes, bruised temples, nose. Police came and took her to jail, although I begged them to get her help. Now there is a no contact with victim order, although I will not abandon her. She eventually ended up in the hospital, which took quite some time, then they determined she no longer should live with me. They placed her in an assisted living facility (for seniors). It is voluntary. When I was cleaning her room, I found a butcher knife under her mattress. Please be safe! Take care of yourself! My daughter was diagnosed with schizophrenia but I am very concerned this is FTD but they have run no tests. She is an adult so, because of HIPPA, I can't access her records or get involved in her care. There is something medical going on but I cannot get anyone to listen to me. I can't get guardianship with the "no contact with victim order. It's been a nightmare! Oklahoma no longer has Medical Power of attorney. I will be praying for you both. My heart breaks for anyone going through this. Not many of my friends stuck around. I know how lonely it is. I don't know where I would be without my church family who have been supporting me. It's like mourning your loved one while they are still alive. ❤️🙏
My 🙏 prayers go out for you. Don't know what id do without Dr. Natalie's you tube. Although family's Christian we all see my 91 year old Mom's walk so differently. These videos explain why. It is so different fr moment to moment. God Bless!
Hey Susan. Similar with my loved one (she's younger by far!) and the schizo diagnoses. Plus her dad with undiagnosed dementia (though the signs are clearly there: the court seems to enjoy "poking the bear" to hear the dad rage). He's got the no-contact order, though he clearly can't stand trial. :/ The police are such a "real help", aren't they? -As in, "not". They seem to focus on calming a situation down, and hours later, the girl passes out from screaming, and the "CIT" cops just leave! 😓But take it from me: the schizo diagnosis for your daughter isn't easily given; they don't just toss that around. Another positive for you: most schizos get put in "wards", *where they get hurt* and meet lovely new boyfriends who like to maim and kill! Rn our loved one is in a rental private home, high security, and mostly just hides. She's got anti-psychotics, but she has a choice to take them or not (she's paranoid) because her dad protected her from hospitialization for years. Your situation (schizo daughter in an assisted living with seniors) is PROBABLY her best outcome while they adjust her meds; if she's truly schizo, she'd have you believing the meds are poison, and her cognitive would just continue to decline. That is a terrifying thing to behold -I've been watching our loved one's cognitive nosedive and there's nothing I can do except pray she doesn't figure out how to suicide (a great desire she seems to have). You can eventually ask for the restraining order to be dropped. Probably sooner than you realize, but (word to the wise?) you have to be willing to accept the diagnosis. If they think you can't handle her (and you getting beat up by her suggests that you can't handle her), I doubt they'll let you near her. Your best bet is to "take some classes" like, "caregiving for schizophrenia" and anything else offered in your area, even online, and SHOW that you take her diagnosis seriously, and that you've read up on safety measures about how to care for someone with schizophrenia. *Then!* (because it's truly hard to get a schizo diagnosis in the first place, so you showing a willingness to accept that she needs meds) you should be able to make headroom with ditching the restraining order and having her stay at your house on weekends, then for a week, &c until a social worker AND a shrink decides that you can care for her. *Then* you can request to be her guardian/conservator, and have access to her medical files. It's a long haul, and you have to be ready for the worst case (ie, she could really be schizo, or any number of other diagnoses). Oh, of course you have to show that you're not going to take her disability (???) or whatever funding she gets (that assisted living probably really likes hanging on to), and misuse it. That's always a huge deal, of course: are you trying to get someone's money. (Don't take offense at that: they do that for ALL people who get funding and someone is willing to "care for them"; they make sure you're not making a money grab. As hard as that is to hear.) Blessings to you: take ALL the blessings and prayers you can get, because you'll need them regardless of her diagnosis. You'll have to say (like video lady) that physical harm is a NO, and you'll call for help IF you need it. And you have to follow up so your daughter doesn't get ripped away again and thrown in an asylum for life.
OMG, this sounds so much like my story. And your thought processes... I recognize them! I ended up calling 911 because my loved one became so agitated I felt unsafe. We have started the Memory Care search, it is challenging with the behaviors. They started my husband on meds that will help manage the behavior. I am a nurse so the system is a bit easier for me to navigate. Thank you for being honest and open. It is comforting to hear you I am not the only one going through this.
"The loneliness is really hard. I'm losing my husband I'm losing my best friend". Only God can help us with that part. I love that you said that. I completely relate to that feeling.
I, too, really *felt* each of these words as Sheila said them. The hardest part of it all is that dementia threatens *your* memories of the life created together and shared. To become a stranger in your husband's mind--one dementia often relates to with hostility--well, I never thought I'd feel as lonely as I do now, living in *our* home, with all its memories echoing down from room to room for *me*, while a lot of the time, now, he thinks he is somewhere else. It's just crushing.
My dad had vascular dementia. He went from a happy, joyful person who found joy in his work to an angry, aggressive person. I was only in my mid 20s and my mom had already passed a few years prior in 2002. Being so young and with a toddler, I could not care for my dad, who was a wanderer, so he went into a memory care home. He was quickly kicked out for aggression issues. Turns out, in Virginia at the time (don't know if this has changed), no homes would take a dementia patient with aggression which blew my mind since I knew it was common. They wanted me to send him to the psych hospital. I couldn't do it. On the advice of a local elder law attorney, I found a small place that only had maybe five residents that could care for him. He lived there until he passed on January 7, 2009 when my youngest turned one week old. At that point, relief would be an understatement. I was so relieved that he didn't have to go through the torment anymore. He just literally wasted away. It was the saddest thing I've ever witnessed.
He's with ur mum in heaven now , no more pain or suffering for them, now take care of your self u still young and ur kids needs u ❤ be strong and god bless you
I definitely relate to Shelia’s story. I am going through many of the same challenges. My husband was actually diagnosed about 4 years ago but had been going through the changes in his mental state for several years. It helps to hear from others because I feel so alone in this journey most of the time. Thanks trailblazer
I appreciate so much that you described the negative, the refusal to leave the house, him not wanting anyone else to come over. Those are exactly what I’m going through. Thank you.
I really feel for Sheila's situation. The negativity is very familiar. And while I don't THINK my lo would ever hit me - he raises his hand or fist and gets the ugliest look and aggressive body stance and I think he would LIKE to hurt me. He has grabbed me hard enough to bruise me. And loneliness is something you can't understand until you are in it. If you tell people anything - they come back with "at least he's ....." or "I have mental issues at times too" - or
As a nurse ihave worked with dementia patients they can get violent with no provocation. They often become stronger as their mind looses it’s touch with reality. I feel for this caregiver. Finding a unit that can take them is a challenge.
I'm taking care of my dad right now. I can't get over how TALL he gets during an agitated state. He gets so violent and dangerous. We are working on getting his hallucinations under control as that's what gets him more worked up. Dead bodies in his bed, maggots, fires, floods, it's a vicious place inside his mind. He tries to set the house on fire to get rid of the "bugs". I'm exhausted.
@@cindylee7855Ihope things are getting better with Dad. A friend of mines mom always saw fires everywhere towards the end. She would really panic, it was so hard convincing her that things weren’t on fire. I can’t imagine what she was experiencing.
I am a retired nurse, and was caregiver of my mom. She advanced from Terminal Restlessness. She forgot my name and I saw the life and motivation leave her eyes in the moment she realized she forgot my name and had told me the day she forgets who I am she would give up 😞Later she fall and hit her head on a sofa leg while I was in the rest room. Hospice put her in respite and she died six weeks later. Resources in my community were difficult but I had great friends. 24/7 care is exhausting and it takes a special person. There is nothing wrong admitting you cannot he a caregiver but those who do are really special. I am sorry for your loss but God bless you as your future progresses.
Hugs from Canada Sheila and thanks for sharing. I just moved into to take care of my mom who has dementia while we get things settled out. I thought the "no" to every question or suggestion was some quirk my mom developed, but not so unique after all. Even when it's in her best interest it's always no. She also doesn't want to leave the house.
I lived a complete hell when my husband had dementia. From death threats , which were real , too every day being a nightmare. Finally the police had to pick him up and he went to a state mental hospital hospital. From there too a nursing home for 8 1/2 years. Nobody can tell me anything about the subject. Blessings
I am so sorry for what you have endured with dementia. Just remember that it is important that you are safe. Sometimes we have to make really hard decisions. God bless you.
My gratitude goes out to Sheila and Dr. Natalie for sharing this very intimate story with others of us going through similar journeys. My husband and I are currently on the same trajectory as Sheila and her husband were at the time this was filmed. I am getting ready to send a link to it to the 2 people that even want to hear the truth of dementia's impact on relationship--my sister and my best friend. Thank you, Sheila for so eloquently sharing your story with Dr. Natalie. It is truly a lifesaving gift to me. I certainly hope and pray that, by now, your dear husband and you *have* found the best resource(s), so that each of you have the care needed. God bless you.
This was a fantastic video. Thank you Sheila for sharing it was so comforting to know that I am experiencing many of the same things. God bless you and know you have helped many in addition to your husband.
Sheila, your story is heart breaking, always living on the edge. I know, I've lived it too. Dr. Natalie interviewed me as well. My story is dementia and violence. It's ugly. But the good news is, it doesn't last forever. I'm seeing a very good councilor, I'm physically moving on or out come December 15. I have a very nice place that I will call home for the next year. And by the grace and goodness of God I've become friends with a really nice woman and we talk a lot. We know its way too early to anything more than talk, but we sure enjoy each others company. At one time I thought there was no hope, but today I do know there is hope. You just wait and see. God rewards faith. If you keep anything, keep your faith. Kindest regards to you and your husband.
Sheila is so kind with her attitude with her husband but also understands boundaries that must happen. What a blessing to her husband! I've found the structure of assisted living has helped my older brother so much and with some humor now takes the meds which are extremely helpful. He and I have been able to remain close because now I'm the neutral party! No situation is without challenges but I'm thankful we could do this. Prayers for wisdom and opened doors.🙏🙏🙏
Thank you Sheila. I am both my parents caregiver, one with alzheimer’s, the other with short term memory dementia. My sister has moved in to help. Your experiences help me to see where I can improve.
My husband had vascular dimentia and passed away under hospice care. You can be on hospice care in the home with dementia. With home health and hospice care, it worked where I could have him right here at home, PTL!
Thank you for sharing such your journey living and loving someone with dementia. The shell of the person does not change, but the person they unfortunately become are not the person they have always been. That is such a huge loss. The decisions to make the choice to care for them at home or in a nursing home, is so heartbreaking for everyone. I have looked after a lot of people with varying stages and types of dementia, it always see the hope in the families that we can make their loved one better and back to their own selves. My heart breaks for them. Thank you so much for sharing. I hope you do not mind if I suggest to others to watch this video. YOur husband's legacy and your story, will be the greatest legacy for others going to go through a journey like this. Thank you and God bless you both.
My husband sounds so much like yours. I lose my temper at times and feel bad about it but he totally wears me out. Constantly moving things ,talking to people that aren't visible to me ,breaking stuff ,making messes . I don't have long term care and Medicare advantage doesn't help! So many people can't afford Memory care and we are in the middle, where we have some assets but there is no way we could pay 12000 a month so don't qualify for medicare. I'm so sorry for you and me.
My husband sounds so much like yours you gave me so much encouragement you are a very strong lady. We are kind of at the beginning of our nightmare,he has not been diagnosed yet but we are all sure he has one of the dementias it has been about a yeazzhe has been showing a lot of signs. His mother passed from Alzheimer’s.He is so negative and miserable it is so hard to be around him.He just bought 500.00 dollars worth of postage stamps,we are 85 I don’t think we will ever use them especially since are bills are all paid auto pay, these are things he is doing. I just want to tell you that what ever you do it will be the right thing you have done such a great job. My thoughts and prayers are with you and your husband. It is such a terrible disease. God bless you.
Sending my love to all the beautiful Careblazers out there. My sisters n I were our Mother’s caregivers for 3 years. She had Alzheimer’s. Between the three of us we were able to keep her with us. I won’t get into all of our experience in our journey but I know how hard it can be. I just want you all to know that you have my reverence and respect. Blessings to you and yours. Wrapping you all in a blanket of love and support. 💝✨🌍✨💝
God bless you Sheila, this interview was heartfelt. I am caregiving for my brother the most difficult thing I have ever been apart of. Please be KIND to yourself. Again thank you for your courage.
My God continue to work in Sheila and strengthen her every second of the day. I can relate to Sheila. However, that she is practically living for husband 24/7. Her altruistic ability is what I desire. My mom has declined immensely since relocating her from Mississippi to Texas. The journey is difficult. I concur the loneliness can be overwhelming. Sheila hang on to the Lord Jesus unchanging hand.🙏🏻🙏🏻🙏🏻🙏🏻💚💚💚❤
I hope a spot comes open in a special place for him as you need help and have to take care of yourself. You don’t have home health care available - you can visit him often. Some of these places have great staff. Take care Sheila you have done a great job for your family. My mother had to stop caring my my brother who was an adult and in her 80s she had to face she was not able to lift and care for him, as she may have injured herself. A plan was made and family visited him. You must take care of yourself.
Dear Sheila..you are courageous, brave and loving. Thank you for sharing your heartbreak and triumphs with us. I am often shaken up, scared or diminished by my husband’s negative behaviour. I’ve finally realized his aggression is not my fault and not my responsibility. Luckily I can find activities that give me some feelings of happiness and “normalcy”. Even just getting out for a 30 minute walk lightens my mood. He is still safe for short periods on his own in the house. I am grateful that a home care person comes every 2 weeks…. I want to make sure my husband knows someone is coming. He doesn’t want any help. Keep looking for any help, friendly visits, online classes, prayer groups or outlets you can find to keep your spirit up. You’ve are a marvellous wife and mother…. You can direct that love for your own well-being.
My husband has dementia and I am struck by his negativity. It was reassuring to me to hear your comments on that. I am sorry you are having to deal with these challenges. And I hope you hang in there.
My husband suffers from Vascular Dementia, adding to the fact of being of lower intelligence because of a seriously abusive childhood. He has been diagnosed for around 4 years, but for twenty years, he's been obsessed with aliens and UFOs. He's losing some of his skills, I no longer let him drive. He spends a lot of time alone. There's little conversation. He's becoming difficult to get him to shower. I am 7 yrs older and suffer from COPD. I have made a method of his medication and meals. Ritualizing is what works now. God bless all us caregivers!
I'm going through a similar situation and except that I have not support from my family; I fear they don't understand at all. I forwarded this video to several family members in the hopes that they could get a glimpse of what I'm dealing with while taking care of my mother. My tears finally came out while watching this video, therefore I'm so grateful to you both for sharing. I began getting counsel from a professional because I feel I'm carrying the world on my shoulders and felt like I was about to break. Thanks for all the tips you shared.
I’m so glad I watched this video. My father has vascular dementia (also had mini strokes) and has aggression. He lives on his own for now (I have a security camera in his studio apartment so I can see him when I’m not with him to see how he’s doing) and I come a few days during the week to clean for him, grocery shop, laundry, etc. I’ve seen on his camera him cursing and acting like he’s fighting someone. This video helped me see I need to start researching into what resources are available if when he goes to see a neurologist again (first time he showed he was angry for being there) if they say he shouldn’t be living on his own.
My dear Shelia you are so amazing to be so strong!! You are a wonderful person!! Stay grounded it won't be forever!! Love and respect Tamsen Roberts in Riverside California
YOU are doing wonderful as a caretaker!! Trust god, never give up.....I am taking care of my mom with 0 help or even phone calls from my 3 siblings and their spouses, 13 grandkids.....ONLY mine help.....its heartbreaking! and knowing that our is considered "generational dementia" (my moms dad and several siblings also suffered this horrible disease)..............BUT YOU ARE DOING GREAT! I am so glad I found this site!.....
Caregiving at home for a dementia patient, usually a family member, is one of the most emotionally and physically draining things a human can ever do. Yet it can provide us with some of the most exquisite experiences of love a human can have. We are incredibly short-sighted in this country in giving medical coverage and assistance for it. I think it comes from the founding century of the nation when we had to push on under any circumstances, ignore all weaknesses and focus on our goals. Time to recalibrate our priorities.
Thank you Sheila for sharing your life and your lessons. You have so much empathetic support from all the CareBlazers who are TRAVELING this long road with you. I relate in so many ways because the ups and downs are so confusing when trying to make decisions. Taking care of myself is likewise a challenge for me since I too live in a remote area where I’m caring for my mom. It’s an hour each way for a trip to the grocery store or any services. Doctors too. And all the care options are such a frustrating miasma of crazy. Nobody wants to come out here to be a care partner. And she doesn’t want to go anywhere. The memory care places are all more than an hour away and that’s totally a major bummer. I want to be able to visit frequently PLUS I was told that I’d still have to take her to all her doctor appointments which seems crazy! Sending you hugs and prayers and POWER BEYOND WHAT IS NORMAL!
I will tell you this, after watching this and reading through these comments, I think it is very important to make a good decision about where you will live out your elder years. Since most of us will need some kind of help at some point, unless we are very very lucky, it seems being very rural or remote or just in areas without a lot of choices for health care is a bad move. I'm not saying this to make people who are already there feel bad, for many it's not really a choice, it's just how it is, but I am thinking of myself and where I would like to be living now and when I get older. I will absolutely be looking at that for myself. I am in a medium metro area in the northeast US. We have a lot of healthcare options here compared to what I'm reading but it's still tough to get help for my mom. Hearing the rural stories and no way to transport these elders is a real nightmare.
Thank you for sharing. I am a caregiver of my husband and at first I found it really difficult. In the end I needed support because his anger was scary. He has now on new meds and is so much calmer. It varies from day to day and as Dr Natalie says the priority is safety and peace. Like you I can only do this because He walks with both of us. He is my comfort and my friend. His love and peace is my strength. Thank you for sharing. My prayer is that you turn your eyes upon Him and the things of earth Become strangely dim in the light of His glory and grace. It is so comforting to know we are not alone. Christ is the anchor in the storm.
Put them in a home once they become physically and verbally abusive. No one’s physical safety should ever be at risk, it is beyond the capability of most. A home is the safest place for them and everyone else. I am going through this now with an athletically built 52 year old.
Dear Friend. Your testimony is so very brave and compassionate and heartbreaking. I witnessed your same struggles when I was a Hospice nurse with my patients and their families and then I walked your journey with my own mother. You are in my heart. You will remain in my prayers. God Bless you and your husband. You are not alone.
I'm not in America but the journey is the same. The not wanting to go anywhere when you're isolated in a regional area is very difficult. Best wishes to you both Sheila.
Natali you are very caring and a VERY GOOD listener! Thank you so much for providing this avenue of obtaining information--very intimate and informative. I commented on this before, but I feel I will sometime soon be the one who needs a Careblazer. I am creating a Word document with links to your shows, for a lack of the correct word. Again, thank you VERY much!
I looked after my Mother and my husband who both had dementia. Mom got nasty with me, cruel words I hadn’t heard from her before. My husband insisted I was seeing other men which wasn’t true. I had never been scared of my husband but in the end I was. Mom died peacefully with a medically death which she had made before she ever got dementia. My husband died peacefully when his liver and kidneys failed due to his position that he no longer needed home dialysis. I invoked the power of medical power of attorney and granted his chosen death with medical assistance. It was a very hard few years with both of them with dementia and no way back. I had to see a mental health worker so I would not slap my Mother for things she said to me. I refused to argue with my husband in his last few months because I didn’t want our last memories made to be of anger and bitterness.
Sheila, I am so sorry you are going through this. My mom has dementia and dad has Alzheimer's, mom is somewhat caring for dad at home. My dad was such a loving and kind man and has now had a total personality change. He is mean and on the verge of violence. My sis and I are trying to get them in a place. Prayers to you! So glad you're leaning on the Lord! He does carry us!
I was going through the same thing. It got so bad (my husband started attacking our special needs daughter who still lives with us) and that did it. He was taken away, put into a lock down unit in the hospital and then sent to Long Term Care. I was told that he had Dementia (no definitive diagnosis) and also has Bipolar Disorder. This all just happened a few days ago. I couldn't handle both my husband and my daughter at the same time. We are not that old and this has been shocking and horrible to deal with. I'm now trying to navigate the system and my husband's placement now at the nursing facility. This is NOT easy. I've had to apply for Medicaid and Guardianship.
It’s not easy getting medical assistance. We have a sister who suddenly was delusional - she says she has ‘dreams’ - but she thinks they’re real. Long story there - but she had just gotten health insurance before her mental state started falling apart. And they pay very little - she’s in an assisted living - but several of us help financially to keep her in an assisted living - and although we won’t starve it’s taking it’s toll on our savings accounts. Her daughter signed her up for Medicaid but it’s been almost a year and they haven’t started paying anything . Most care facilities are over $2000 a month - the fancy ones are $5000! It’s concerning! One month and some accounts are wiped out - how can families afford this and take care of their own needs? The sister in the care facility is mean and hateful to any family member helping financially - she slaps at us , spits on us. We are in our mid 70’s and can’t have her living with us. I’ve stopped visiting her - she’s really mean to her daughter who tried so hard to find a nice that was affordable - barely . It’s a nice quiet assisted living but still expensive. It’s really sad - hard - and depressing .
Praying for you Sheila. Your story is my story. I too have a strong faith and family, this is what gets me through. Dr. Natalie is a Godsend, she has given me more help and knowledge than his doctors.
Dear Sheila, know that you are not alone and there are many of us out here who join with you spiritually. My husband has Lewy Body as well as bipolar one and then he got lymphedema--talk about a combination to challenge my soul and my patience! I think faith has made a huge difference and having a couple of dogs and a cat has really helped to to give him something to do like feeding them or taking them out in a fenced yard. I do have to constantly watch that the animals are brought in because sometimes we'll be going out and I'll go check and they've been left outside. It's not easy at all and in fact I think I have PTSD from the negative parts or whole experience. Sending lots of love and hugs from Texas. We're in our early 60s and this started officially seven-and-a-half years ago but really I was seeing signs a few years before that I just didn't know what Lewy Body was or dementia. Most friends, couples we used to go out with for dinner, his entire family including his mother have all but disappeared. Everybody doesn't want to deal with this foremost and also don't want to interfere. Three people remain virtual friends and send cards and letters so he has someone besides me thank goodness to show they care, it makes a difference. It bothers me a lot if we are 20 minutes late for a doctor's appointment--but it took six hours to get there from start to finish if he can get in a car-- and yet despite knowing the situation, we're continually turned away for being more than 15 minutes late. Finally one of my doctor said last week he is not going to schedule my appointment again so now I am without or healthcare which is such a shame. I wish there was someone who could call him and explain this! He had the same thing happen at a dentist--we were exactly 2 minutes late and the office manager said they were not going to have him as a patient anymore and added me in too. Unless you've been through it, no one understands this stress, anxiety, danger, psychosis, involved in the situation. Again remember you are not alone. Take my hand and we'll walk together
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@rranimalrescue2050 - We really should have a Department in the Health Care System that makes House Calls for such cases or incidents. We have Ambulances. Why can't we have a Health Care Dept that makes House Calls?
Thank you so much for sharing your story, Sheila. Can so relate to your story and wish you all the best. You’re so courageous. So glad you have reached out to others. Big hugs!!
We have had the same experiences and challenges with getting home health care and his acceptance of care. Thank you for sharing, it really helps to know we are not alone. Hugs to you on this journey.
Everyone needs to live and work in safety and these issues must be openly discussed, instead of covered up. Sheila is a brave woman. I hope the local professional community and insurance company can be held accountable when they fail.
While listening to Sheila I so feel for all that she is going through. I have also been reviewing the comments & thank Sheila & all those writing comments; we are being supportive of each other, like we have been close online friends forever. God bless you all today, tomorrow & forever...
Enjoying all care blazer videos as l am only 2 years into this 'journey' it's a relief to know all these things my partner is doing are normal for dementia sufferers. As we aren't married(20 years together though) it's even more difficult to get information on ways to help with his finances like taxes and paying bills. I have finally got an EPOA which once activated will help but now l have to get him to take an MRI for a definite diagnosis which he is refusing. Thank you for the videos. .. they are such a help even though we are in NZ and help services are different.
Hi, I am glad/ mostly sad to hear this story. My 66 yr old brother has been also diagnosed with Vascular Dementia. It was in Sept. This year. Right now he seems to know what he is doing but I still think he doesn’t. He is mean verbally and sometimes physically. He has Homecare 24 hrs a day but he really does not want anyone. But he does need them. His girlfriend is exhausted and we can’t help her because none of us(family) live close to them. This video has really opened my eyes and I sent it to my familly. Hopefully is opens theirs. Thank you.
How many of us, are suffering this tyranny of dementia, I am in my right mind, totally competent , and in prison both mentally and physically to a 91 year old. He was a wonderful man, now he is killing me, I no longer have a life, the verbal abuse is non stop, mercifully he is not physically violent. I used to love him, that's long gone. I think he is desperate to hide his condition, so every error or misjudgement he makes is my fault, he is currently trying to work out how I caused Covid, ok funny, not funny at all.
I feel the same way, although my husband isn’t physically abusive (yet) & I pray he never does, he does do things that cause me real concern. My husband is very argumentative & ruminates. I feel like he does do things to me or animals on purpose to cause mayhem or upheave. If I ask him not to do something, he does it even more. If I ask him to do something, he wont do it at all. He has these ticks he does with his mouth, one sounds like fingernails on chalkboard to me, so ever since I’ve told him this & often have to ask him to stop, he seems to be doing it even more now. In my mind, I know they’re not intentional but sometimes I question if it’s is or not. When he gets upset he will go on & on with it. His responses are often child like or like a rebellious teen. He often has fits like a child. It’s insane how dementia has changed my husband & with each day that passes something new is added or taken away. He has early onset & was diagnosed just before his 58th bday but I believe he’s had this at least the last 8-10 yrs & progressively getting worse over the last 3 yrs & really progressing over the last 6 months. It is mind blowing how fast he is changing. I feel like I am in bereavement without an end. I am grieving the loss of my husband every single day, but he’s still alive, so each day he dies a little more but I can never fully grieve my loss or heal bcz he’s not technically gone. I don’t want to lose him but in many regards I already have. I am thankful for every day I still have with him but still question how I will be able to care for him as his condition worsens. I often wonder if I will ever reach a point in feeling as tho I have no feelings for him like so many other women have expressed. That has to be just the worst place to be but I get it.
My dad has vascular dementia and always blames my mum for things also he blags his way out of strange things he says by telling us he was only joking. He's always been a stubborn man and always thought he was right. Never liked being advised anything, so now that has increased. He's not violent at this stage but he has always been a very quiet person, I don't know if that contributes in some way?
@@dementiadiaries you said about the noises. My dad makes a noise with his mouth like he's sucking up dribbling saliva but he isn't dribbling. It drives me nuts
I see the abuse starting with my cousin toward his wife but she continually breaks “rule 1” and argues with him and gets mad at him when he cleans the countertop a dozen times. My observation is she brings his anger on herself. When I stay with him I don’t have the problem.
Im in SA. Thank you for sharing, I experience the "same" situation, emotions with my husband's dimentia. Only my relationship with Jesus keep me going. Blessings Adri
After someone is violent even once you are constantly watchful and it creates a constant state of increased adrenaline. I lived the two years waiting for a residential school for autism for my daughter in fear. Six months after I placed her I was diagnosed with PTSD. Now mom has dementia and she chased me out of her room brandishing a chair, legs forward like swords. She now triggers my PTSD. Try to remember that even if you have a good week he will repeat those behaviors again and it may be worse. Frugal is nice, but please fight for yourself as strongly as you fight and advocate for him. Use the insurance that you paid up for this reason exactly. I didn’t make it to a dr appt for nearly three years and have fusions in my back exacerbated from restraining my daughter. Perhaps you will come out the other side fine, but don’t take that much risk. Everyone’s quitting point is different, but consider that sooner rather than later could be a better choice to using up everything you have and all that you are. I hope you have a blessed Thanksgiving, heaven knows you deserve it!
I recommend looking into autism self-advocacy: consider counseling and understanding your autistic daughter: restraint can be DEADLY for autistic people do your research: I beg of you, it only gets worse if you continue this behaviour how would you feel if, whenever you were frustrated or not understanding something, annd expressed that somebody would lie on top of you and hook your arms and legs have empathy, apparently we're the ones who don't have it (also, reach out for help: youth programs can be helpful, nobody deserves to not have access to the resources and knowledge they need)
@@Beechepisode I restrained her when she was young and I could put her in a bear hug. It was so she could not further injure herself. I was only in that situation for so long because I had to fight my school district to allow the placement. She was never harmed, a thing I can certainly never say about myself.
@@Beechepisode I know the kinds of holds you are talking about, that often has the student prone with arms and legs rendered immobile, that was not what I was doing. But you need to understand that the potential for damage and danger she was capable of. I would bear hug her to keep her from breaking our belongings and from her causing me further fractures and other trauma from shoving me into furniture and throwing metal and glass objects at me. The wheels turn very slow For a residential spot, far more kids than beds. I was trying to survive and keep her safe in a situation that was very far from ideal.
My Mother has had episodes of bipolar disorder, so dementia outbursts are hard to distinguish from her mental issues, and even from UTI confusion. She is in long term facility, but it is hard to watch her decline, level off, decline. Shelia, I’m glad you expressed this in your video. My heart is with you.
I feel from the bottom of my heart for her. My wife is bcoming exactly like her husband. It is frustrating, and a very helpless feeling. God bless her.
After caring for my dad I learned A LOT! The first thing is the patient and caregiver need to be treated together. My dad became so violent I was terrified of him. We wasn’t able to afford for memory care. Dr’s just would dismiss my concerns and responded with the same thing “it’s just the disease”. If insurance doesn’t pay to put our loved ones in facilities. They should pay to keep their caregivers mentally and physically able to care for the patient ☮️💗🙏
Wow, I’m going through the same kind of things with my husband, but boy, I feel so grateful that I now get help with his bathing and dressing because at least I feel like I get a bit of respite care for those times as he was more aggressive then, as I was in closer contact. He has only been aggressive to one helper and that was a male. I too appreciate being told I’m ok with not handling every situation like I’m perfect. I’m doing my best, just like he is. I did take photos of the bruises, and showed him, he was shocked, until the next time. I can relate to her dealing with health workers, everyone tells you what you should do, but how, no one can tell you that. Loneliness is the hardest, I knit and crochet a lot! Thank you for this 😻
I've just found your channel & subscribed. My brother n I are taking care of our mom, who's fixing to turn 89, who has dementia. She still lives by herself; but, I'm just next door & my brother is just down the street, so we see her/ check in with her several times a day, although I know there's coming a time when I will need to move in with her. She's been my mom since I was 3 years old & I'm dreading the day when I walk in the house & she doesn't remember who I am.😢
I haven’t even finished the video yet and I could declare us to be in the Caregiving Sisterhood! Same story, same timing, and same medical history but different characters. My Mom is my challenge and is due to move into a facility very soon. Just walking the same steps through the Caregiving jungle. Please be sure to do an update (when things settle down) so we know you are safe and sound.
I am so sorry you had to experience this! My mother had Alzheimer's for 14 years before she passed of a heart attack. She never turned mean or violent. She didn't know her children at the end, but always knew her husband. She was content to sit in her chair and visit her children and grandchildren that came often to see her.
I think for us care blazers learning to let go of the unearned guilt and prioritizing our self care are our toughest obstacles yet also our salvation if we master them both!
Listening to your story, my father is going through the same thing. My mother was diagnosed five years ago. It took forever to get help. ( living in a small community) also during Covid. Long story short, just got her placed in long term care. It’s only been two weeks. My mother is also agressive at times. It’s difficult. I m glad I found care blazers . It has helped me to understand the disease better, and ways to cope with different stages . Hope you get the help you need.
Her story is sad, but there’s no room for violence. Sounds like he needs to be in a home. My sister is in the same situation and denies the danger she’s in. It’s sad for everyone
My Mother had dementia before she transitioned to be with the Lord on 4/1/2022 I retired from my job of 36years to take care of my Mother full time the last 18months of her life in my home. I'm so glad I did, it was very challenging but worth it to me.
there needs to be better safe guarding for caregivers, they need looking after and protecting as much as the person suffering from dementia. Its so sad to hear this.
I can totally relate..ive been looking after a pt.w/ dementia & i got hit at my face with the key chains; threwed at with bottled medicines,got hit & punched ....but ive been with him for 15 yrs..he trusted me before..we had many good yrs together..
26:35 redirecting was helpful with mom sometimes. Also, a couple of times we acknowledged to her; “yes, I know this is hard (or wrong), I’d like to fix it and I don’t know how.” And no one deserves this, you are doing the best you can. You are doing the best you can in a very difficult situation.
Everything you have said l can relate to.These care blazer videos were a god send just when l needed them.l cared for my father who now is in a care home just short distance away from my home.You take care of yourself your doing a fantastic job.
Before this video even gets started, I just wanted to send my strength and my hope and my peace to this lovely lady because just from the description, I can tell you that I know it's how it feels. My husband had early onset to dementia but had been misdiagnosed as hav😮ing bipolar depression because of his young age. Early onset of dementia is rare according to some doctors. His personality changed greatly. From a sweet, loving gentleman to an angry man.
And based on what I see and read nowadays I can't help wondering how truly rare it really is. I wonder if it's just not being caught because the mindset of the medical professionals is that they're too young, so it doesn't get diagnosed. It is true that bipolar disorder doesn't get diagnosed in some folks for a long time but the reality is that anyone with bipolar knows something was wrong from an early age, even if they didn't know what it was. Deep down, you know there is something that is at least different. To suddenly develop bipolar disorder is highly suspect. I hope this becomes more easily diagnosed in the future.
@@jenniferloftus2363 actually he was diagnosed years ago. But what he's now going through... this isn't bipolar disorder. This is way different. Won't remember why he's going to the Dr. Becoming very unemotional yet 🤔 falling apart and not knowing why... failing a cognitive exam 3 times.
Thank you for sharing all that. I went thru almost the exact same thing with my husband of 58 years…and in the same time frame. Dr Natali really helped with good advice. Jim died in 2020.
Be kind to yourself Sheila. You are doing a wonderful job caring for your husband but you must care for yourself and your needs too. I worked in a care facility for people with dementia and too many times saw emergency admissions as the spouse had reached breaking point physically and mentally. You are doing the right thing in making arrangements for your husbands long term care in a facility NOW because it is the place he will receive the care he needs/will need as his condition deteriorates. In my experience it is totally normal for the spouse to feel (totally unwarranted) guilt for doing so and wonder if they could/should have waited longer. Your husband seemed to be a lovely man before this illness took hold and im sure he would have wanted you to do whatever it took to protect your own health and wellbeing.
If he is violent, the care home won't keep him. They will evict him. I (and my father) lived through this. A woman sitting next to me on the plane said her father was evicted 12 times from different care homes before the moves finally killed him. She said they exhausted all the facilities locally and had to go out of state. She said if she told the facility everything up front, they wouldn't admit him. So, she had to hide his past at each home, just to get him admitted! I experienced something similar with my father. Even though there were ways to avoid the violence, the care homes are so strapped for caregivers they can't do anything special for anyone. (And the caregivers they do have are woefully untrained and inexperienced.) The name of the facility game is You Get What You Get And You Don't Make A Fit. But having said this, the eviction and DOZENS of ER visits the facility forced on my father (due to violence around being washed and changed) killed him in under a year. And, honestly, a fast demise is a mercy with this disease. So, ultimately, though it was brutal, at least it was shorter than my mother's journey (also with dementia).
This is what happened to us when my dad was alive. He got kicked out of home after home for violence which was super sad b/c he was the most docile, loving person before the dementia. They wanted me to put him in a psych hospital or send him out of state and I couldn't do it. Thankfully, we did find a very, very small home that would take him and I think just the amount of moving made it so he lost the ability to walk which took some of the umppphhh out of his hitting and kicking so he was able to stay until he passed away. Like you said, I was relieved when he passed. It was pure hell for him.
Thanks. We didn’t know mom had gone off her meds. She used to beat me up so, I called the police (twice!). One day, mom couldn’t stand up so her health aide called Emergency. I called my sis, a lawyer, for help. She blamed ME then, post-hospital, took Mom&Dad overnight & placed them in a home out west, near her. It’s been HELL. Eventually, a phone company gave me their new phone number(!!). I have been calling Mom&Dad regularly. I tell Mom I love her and sing to her a lot🙂. Great luck to all🌬️❤️🩹🕊️.
I admire you so much for your strength and dedication in caring for your loved one. You are a strong and compassionate woman and a good role model. I thank you.
I think my husband is in the beginning phases of some type of dementia. I recognize some of the things she has mentioned in my husband. It’s so scary knowing that this is going to happen eventually 😢 We’re in our late 60’s.
ANY changes in behavior or personality in an older person need to be taken very seriously and they can and do often indicate a serious underlying health condition. So many folks think well, he's just getting older, etc but usually people don't change that much with age. I hope you can get some help. It's so hard in the very beginning because the person can usually fool the rest of the world, if that makes sense. Even the doctors don't see it in the beginning. That's if he's been going to a doctor regularly anyway. Lots of men don't go. Sometimes it's an insurance thing, which is so sad and should not be, but even with insurance men are less likely to go to the doctor.
Today is 2-15-2024. My husband has dementia. I feel like you were describing my life. No one knows what we go through. It IS lonely and we miss so much. Thank you for sharing. God bless you.
Your story brought me to tears. My dad and I cared for my mother for almost 12 years with Lewey Body Dementia with Parkinson’s. She became violent towards the end. We had to care for her at home because of the violence. Dad died in 1998, Mom died in 1999. A number of years ago I started coming down with the same symptoms my Mom had, got diagnosed 4 years ago. To spare my family the anguish of caring for another dementia family member I chose to enter a Veterans Assisted Living Facility. I am happy here and happy for my family that they understand why I did not want them to go through caregiving again. They visit me weekly and I have many friends here. I will pray for both you and your husband that you both receive God’s assistance very soon.❤❤
Stem cells
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@@edwarddawseyjr8191o
So unselfish of you
You are truly amazing. After caring for my dad who had vascular dementia, I have told my husband the same as you. If I come down with dementia, please just put me in a home. Do not burden yourself with having to go through the anguish of my care. Just come visit and we can have quality time that way.
My friend's father has dementia. His mom didn't want to send him to a home. He ended up beating her on the head and she died of her injuries. He's in a home now. This is no joke, dementia, when you need help you really need it.
oh, dear God, what a horrible thing to happen. I'm sorry this happened to your family.
That is awful and so sad
😢omg 😭
Omg before you even finished introducing Sheila I was ballin crying! I'm an only child and my mom is progressively getting worse. Taking care of her is so overwhelming I have a crying session daily because she is so mean and cruel to me especially at sundown so my heart goes out to you! Thank you for sharing
My dad was diagnosed with Aggressive Dementia, and the doc told me to never turn my back on him. I didn't take it very serious the one day he flipped and long story short....I spent over 8 hours in the ER with a severe traumatic brain injury after he attacked me with a hammer. If your partner or family member is violent then NEVER underestimate what they can do. Be healthy, stay safe and many blessings.
😮 Ohhhh myyyy goodness.
I audibly gasped.. peace, blessing, and healing to you my dear.❤
That is so awful, and to think our elderly family members wouldn't be capable
of these things. Thank you for contributing to this awareness.
I believe you completely and I am happy you are warning other caregivers. I am taking care (solo 24/7) of my 84 year old Mom who I love dearly but it has become very challenging. She has always had a narcissistic streak, been verbally abusive to others at times, but not violent. Now in mid to late stage Alzheimer's dementia she has become violent, slapping and hitting me when at her worst. Other times she's the nicest person you could meet. Our loved ones personalities change when they have dementia. The challenging part is you never know what is going on in their mind when having delusions and behavior changes rapidly. You have to be ready for anything. My Mom has also been going through the wandering phase for awhile now and will disappear in the amount of time you can quickly go to the bathroom. I now have to bring her in the bathroom with me to use the bathroom or shower. She snuck away "looking for her childhood home" that's a thousand miles away and got lost several times to the point the police became involved. Any dementia is a horrible disease and one many people do not have empathy for. They just don't want to deal with the person anymore. God bless all caregivers 🙏🙏.
@@stacyanderson1593 You are a strong person. Be healthy, stay safe and many blessings
I am going through something very similar to what Shelia's going thru. It is so darn hard to find help. Prayers for us caregivers.
😢 I thought it was me being interviewed!! This was very helpful. Thanks! 😢 45:07
Praying for you ❤️🙏
There is no help for the middle class! My husband's hospice social worker wants me to pay up front money for a care giver voucher!
My husband was diagnosed with vascular dementia in 2022. He also had several small strokes which led to the dementia. He was never violent or ever hurt me but he was always sad. He couldn’t accept what was happening to him . He was always strong and healthy , never sick , even worked for a year with help from his co workers. I was his caregiver and kept him home with me until he passed on January 7, 2024.
💕🫶🏾
My mom passed away from vascular dementia on October 14th, 2021. I miss her
I am so sorry for your loss 🙏.
@@JanKraslawsky-pj1er Thank you
I so relate to Sheila. Although it was my mother (not my husband), it was terrible. She had Lewy Body Dementia. I am single. I kept her at home with me for as long as I could. Although my sweet mother was never violent, the 24/7 care was exhausting. I didn’t have help, and she didn’t qualify for home care; therefore, she and I struggled through it together until she fell in her bedroom, breaking a hip. She underwent successful surgery. Because she needed to go to rehab, I made that decision reluctantly. The only facility open in our area at that time (during Covid) was one that had been built in the 70s. The quality of care that is so often pervasive in these facilities caused me great concern. I was right to be concerned, but I wasn’t allowed in during Covid. She didn’t get physical therapy. By the end of the lockdown, it was clear to me that my dear mother had not received proper care. She was transferred to a different floor and although I visited several times weekly, she vegetated there until her death in April of 2022. I considered it a blessing that she didn’t know me or her surroundings near the end. My heart goes out to the families and loved ones who suffer through and with these horrible diseases.
I came upon this and I am going through a similar experience, my partner of 35 years has moderate Alzheimer's. She was diagnosed late as she refused to engage when she was clearly showing symptoms, retrospectively these were going on for probably 7 years.
Her brain scan showed stage 3 dementia.
She now no longer recognises me and has decided that I am a visitor, so I am in the guest room now. Her behaviour is so challenging for me with the imagined people coming and going, her long deceased parents staying here etc.
I've just had surgery for kidney cancer and don't feel that I can DO this anymore. I'm starting tomorrow to research care homes for her.
Talk to a social worker.
I have a saying on my refrigerator I read daily , On my bad days I need you, on my good days I praise you, but every day I need you. Thank you Lord for being there for me.
😭 I am so sorry. I can really relate to your story. This happened to me too, only it was my 28-yeat-old daughter I had been caring for. It is a very long story. She is usually considerate and loving even though most of the time she does not realize I am her mother or know who she is. There have been a handful of violent episodes. One time she grabbed me by the throat, last time she got me on the ground and pummeled me. I ended up with 2 black eyes, bruised temples, nose. Police came and took her to jail, although I begged them to get her help. Now there is a no contact with victim order, although I will not abandon her. She eventually ended up in the hospital, which took quite some time, then they determined she no longer should live with me. They placed her in an assisted living facility (for seniors). It is voluntary. When I was cleaning her room, I found a butcher knife under her mattress. Please be safe! Take care of yourself!
My daughter was diagnosed with schizophrenia but I am very concerned this is FTD but they have run no tests. She is an adult so, because of HIPPA, I can't access her records or get involved in her care. There is something medical going on but I cannot get anyone to listen to me. I can't get guardianship with the "no contact with victim order. It's been a nightmare! Oklahoma no longer has Medical Power of attorney.
I will be praying for you both. My heart breaks for anyone going through this. Not many of my friends stuck around. I know how lonely it is. I don't know where I would be without my church family who have been supporting me.
It's like mourning your loved one while they are still alive.
❤️🙏
I am so sorry. Sending prayers and love! ❤️
The very last sentence wow is so true sighhhhh really really sad😔
My 🙏 prayers go out for you. Don't know what id do without Dr. Natalie's you tube. Although family's Christian we all see my 91 year old Mom's walk so differently. These videos explain why. It is so different fr moment to moment. God Bless!
Hey Susan. Similar with my loved one (she's younger by far!) and the schizo diagnoses. Plus her dad with undiagnosed dementia (though the signs are clearly there: the court seems to enjoy "poking the bear" to hear the dad rage). He's got the no-contact order, though he clearly can't stand trial. :/
The police are such a "real help", aren't they? -As in, "not". They seem to focus on calming a situation down, and hours later, the girl passes out from screaming, and the "CIT" cops just leave! 😓But take it from me: the schizo diagnosis for your daughter isn't easily given; they don't just toss that around. Another positive for you: most schizos get put in "wards", *where they get hurt* and meet lovely new boyfriends who like to maim and kill! Rn our loved one is in a rental private home, high security, and mostly just hides. She's got anti-psychotics, but she has a choice to take them or not (she's paranoid) because her dad protected her from hospitialization for years. Your situation (schizo daughter in an assisted living with seniors) is PROBABLY her best outcome while they adjust her meds; if she's truly schizo, she'd have you believing the meds are poison, and her cognitive would just continue to decline. That is a terrifying thing to behold -I've been watching our loved one's cognitive nosedive and there's nothing I can do except pray she doesn't figure out how to suicide (a great desire she seems to have).
You can eventually ask for the restraining order to be dropped. Probably sooner than you realize, but (word to the wise?) you have to be willing to accept the diagnosis. If they think you can't handle her (and you getting beat up by her suggests that you can't handle her), I doubt they'll let you near her. Your best bet is to "take some classes" like, "caregiving for schizophrenia" and anything else offered in your area, even online, and SHOW that you take her diagnosis seriously, and that you've read up on safety measures about how to care for someone with schizophrenia. *Then!* (because it's truly hard to get a schizo diagnosis in the first place, so you showing a willingness to accept that she needs meds) you should be able to make headroom with ditching the restraining order and having her stay at your house on weekends, then for a week, &c until a social worker AND a shrink decides that you can care for her. *Then* you can request to be her guardian/conservator, and have access to her medical files. It's a long haul, and you have to be ready for the worst case (ie, she could really be schizo, or any number of other diagnoses).
Oh, of course you have to show that you're not going to take her disability (???) or whatever funding she gets (that assisted living probably really likes hanging on to), and misuse it. That's always a huge deal, of course: are you trying to get someone's money. (Don't take offense at that: they do that for ALL people who get funding and someone is willing to "care for them"; they make sure you're not making a money grab. As hard as that is to hear.)
Blessings to you: take ALL the blessings and prayers you can get, because you'll need them regardless of her diagnosis. You'll have to say (like video lady) that physical harm is a NO, and you'll call for help IF you need it. And you have to follow up so your daughter doesn't get ripped away again and thrown in an asylum for life.
Sending you love. 💝🌍💝
This makes me feel lucky that my husband with dementia can’t walk. He is not violent and tries to cooperate so far.
Thank you for reminding us to give ourselves grace for being human and doing the best we can for those we love.
AMEN. !!!
@@lydiakinnaman3679 qqq
OMG, this sounds so much like my story. And your thought processes... I recognize them!
I ended up calling 911 because my loved one became so agitated I felt unsafe. We have started the Memory Care search, it is challenging with the behaviors. They started my husband on meds that will help manage the behavior. I am a nurse so the system is a bit easier for me to navigate. Thank you for being honest and open. It is comforting to hear you I am not the only one going through this.
"The loneliness is really hard. I'm losing my husband I'm losing my best friend". Only God can help us with that part. I love that you said that. I completely relate to that feeling.
I, too, really *felt* each of these words as Sheila said them. The hardest part of it all is that dementia threatens *your* memories of the life created together and shared. To become a stranger in your husband's mind--one dementia often relates to with hostility--well, I never thought I'd feel as lonely as I do now, living in *our* home, with all its memories echoing down from room to room for *me*, while a lot of the time, now, he thinks he is somewhere else. It's just crushing.
My dad had vascular dementia. He went from a happy, joyful person who found joy in his work to an angry, aggressive person. I was only in my mid 20s and my mom had already passed a few years prior in 2002. Being so young and with a toddler, I could not care for my dad, who was a wanderer, so he went into a memory care home. He was quickly kicked out for aggression issues. Turns out, in Virginia at the time (don't know if this has changed), no homes would take a dementia patient with aggression which blew my mind since I knew it was common. They wanted me to send him to the psych hospital. I couldn't do it. On the advice of a local elder law attorney, I found a small place that only had maybe five residents that could care for him. He lived there until he passed on January 7, 2009 when my youngest turned one week old. At that point, relief would be an understatement. I was so relieved that he didn't have to go through the torment anymore. He just literally wasted away. It was the saddest thing I've ever witnessed.
He's with ur mum in heaven now , no more pain or suffering for them, now take care of your self u still young and ur kids needs u ❤ be strong and god bless you
I am so sorry that you hurt. Give yourself grace. You are a kind and caring person. ❤
I definitely relate to Shelia’s story. I am going through many of the same challenges. My husband was actually diagnosed about 4 years ago but had been going through the changes in his mental state for several years. It helps to hear from others because I feel so alone in this journey most of the time. Thanks trailblazer
We are in this together but yet a LONELY existence 💔
I appreciate so much that you described the negative, the refusal to leave the house, him not wanting anyone else to come over. Those are exactly what I’m going through. Thank you.
💔😭💔😭 oh sweetheart! Don't feel alone. I've lived like that for 15 years!!💔
I had this also.
😢
My dad had FTD was hardest thing ever .iam a carer been in care for 36 years and it’s not easy
My husband was diagnosed 4 years ago. I understand your experience. Know that my prayers are with you daily. Much love to you Sister.
I really feel for Sheila's situation. The negativity is very familiar. And while I don't THINK my lo would ever hit me - he raises his hand or fist and gets the ugliest look and aggressive body stance and I think he would LIKE to hurt me. He has grabbed me hard enough to bruise me. And loneliness is something you can't understand until you are in it. If you tell people anything - they come back with "at least he's ....." or "I have mental issues at times too" - or
How true!!!
Isn't that just guilting you into abuse?
My husband started out the same way. But now he actually hits me.
As a nurse ihave worked with dementia patients they can get violent with no provocation. They often become stronger as their mind looses it’s touch with reality. I feel for this caregiver. Finding a unit that can take them is a challenge.
I'm taking care of my dad right now. I can't get over how TALL he gets during an agitated state. He gets so violent and dangerous. We are working on getting his hallucinations under control as that's what gets him more worked up. Dead bodies in his bed, maggots, fires, floods, it's a vicious place inside his mind. He tries to set the house on fire to get rid of the "bugs". I'm exhausted.
"them" Being a nurse is one thing, but being a wife, husband, child, best friend, a loved one, is completely different. Be careful with your words.
@@cindylee7855Ihope things are getting better with Dad. A friend of mines mom always saw fires everywhere towards the end. She would really panic, it was so hard convincing her that things weren’t on fire. I can’t imagine what she was experiencing.
@@Tina-bp7wt ??
@@Jane-yq6yqTina is grieving. That's why she is triggered.
Loved the interview. I lost my mother and husband 14 months apart and I was their caregiver. Thank you.
i just wanna give this woman the biggest hug :(
I am a retired nurse, and was caregiver of my mom. She advanced from Terminal Restlessness. She forgot my name and I saw the life and motivation leave her eyes in the moment she realized she forgot my name and had told me the day she forgets who I am she would give up 😞Later she fall and hit her head on a sofa leg while I was in the rest room. Hospice put her in respite and she died six weeks later. Resources in my community were difficult but I had great friends. 24/7 care is exhausting and it takes a special person. There is nothing wrong admitting you cannot he a caregiver but those who do are really special. I am sorry for your loss but God bless you as your future progresses.
Hugs from Canada Sheila and thanks for sharing. I just moved into to take care of my mom who has dementia while we get things settled out. I thought the "no" to every question or suggestion was some quirk my mom developed, but not so unique after all. Even when it's in her best interest it's always no. She also doesn't want to leave the house.
I lived a complete hell when my husband had dementia. From death threats , which were real , too every day being a nightmare. Finally the police had to pick him up and he went to a state mental hospital hospital. From there too a nursing home for 8 1/2 years. Nobody can tell me anything about the subject. Blessings
I am so sorry for what you have endured with dementia. Just remember that it is important that you are safe. Sometimes we have to make really hard decisions. God bless you.
My gratitude goes out to Sheila and Dr. Natalie for sharing this very intimate story with others of us going through similar journeys. My husband and I are currently on the same trajectory as Sheila and her husband were at the time this was filmed. I am getting ready to send a link to it to the 2 people that even want to hear the truth of dementia's impact on relationship--my sister and my best friend. Thank you, Sheila for so eloquently sharing your story with Dr. Natalie. It is truly a lifesaving gift to me. I certainly hope and pray that, by now, your dear husband and you *have* found the best resource(s), so that each of you have the care needed. God bless you.
This was a fantastic video. Thank you Sheila for sharing it was so comforting to know that I am experiencing many of the same things. God bless you and know you have helped many in addition to your husband.
My prayers are with you and your husband. You are a very strong lady indeed.
Sheila, your story is heart breaking, always living on the edge. I know, I've lived it too. Dr. Natalie interviewed me as well. My story is dementia and violence. It's ugly. But the good news is, it doesn't last forever. I'm seeing a very good councilor, I'm physically moving on or out come December 15. I have a very nice place that I will call home for the next year. And by the grace and goodness of God I've become friends with a really nice woman and we talk a lot. We know its way too early to anything more than talk, but we sure enjoy each others company. At one time I thought there was no hope, but today I do know there is hope. You just wait and see. God rewards faith. If you keep anything, keep your faith. Kindest regards to you and your husband.
Well done you
Sheila is so kind with her attitude with her husband but also understands boundaries that must happen. What a blessing to her husband!
I've found the structure of assisted living has helped my older brother so much and with some humor now takes the meds which are extremely helpful. He and I have been able to remain close because now I'm the neutral party! No situation is without challenges but I'm thankful we could do this. Prayers for wisdom and opened doors.🙏🙏🙏
Sheila, I'm so sorry you are having such a challenging experience. I hope you can get the support you need. This is so heavy.
Thank you Sheila. I am both my parents caregiver, one with alzheimer’s, the other with short term memory dementia. My sister has moved in to help. Your experiences help me to see where I can improve.
My husband had vascular dimentia and passed away under hospice care. You can be on hospice care in the home with dementia. With home health and hospice care, it worked where I could have him right here at home, PTL!
Thank you for sharing such your journey living and loving someone with dementia. The shell of the person does not change, but the person they unfortunately become are not the person they have always been. That is such a huge loss. The decisions to make the choice to care for them at home or in a nursing home, is so heartbreaking for everyone. I have looked after a lot of people with varying stages and types of dementia, it always see the hope in the families that we can make their loved one better and back to their own selves. My heart breaks for them. Thank you so much for sharing. I hope you do not mind if I suggest to others to watch this video. YOur husband's legacy and your story, will be the greatest legacy for others going to go through a journey like this. Thank you and God bless you both.
My husband sounds so much like yours. I lose my temper at times and feel bad about it but he totally wears me out. Constantly moving things ,talking to people that aren't visible to me ,breaking stuff ,making messes . I don't have long term care and Medicare advantage doesn't help! So many people can't afford Memory care and we are in the middle, where we have some assets but there is no way we could pay 12000 a month so don't qualify for medicare. I'm so sorry for you and me.
In the same situation and I truly scared, lonely and overwhelmed
My husband sounds so much like yours you gave me so much encouragement you are a very strong lady. We are kind of at the beginning of our nightmare,he has not been diagnosed yet but we are all sure he has one of the dementias it has been about a yeazzhe has been showing a lot of signs. His mother passed from Alzheimer’s.He is so negative and miserable it is so hard to be around him.He just bought 500.00 dollars worth of postage stamps,we are 85 I don’t think we will ever use them especially since are bills are all paid auto pay, these are things he is doing. I just want to tell you that what ever you do it will be the right thing you have done such a great job. My thoughts and prayers are with you and your husband. It is such a terrible disease. God bless you.
Dr Natali...I gotta say, my family and I have learned a lot from your video's and the advice you give is invaluable.
Sending my love to all the beautiful Careblazers out there.
My sisters n I were our Mother’s caregivers for 3 years. She had Alzheimer’s. Between the three of us we were able to keep her with us. I won’t get into all of our experience in our journey but I know how hard it can be.
I just want you all to know that you have my reverence and respect. Blessings to you and yours. Wrapping you all in a blanket of love and support. 💝✨🌍✨💝
God bless you Sheila, this interview was heartfelt. I am caregiving for my brother the most difficult thing I have ever been apart of. Please be KIND to yourself.
Again thank you for your courage.
My God continue to work in Sheila and strengthen her every second of the day. I can relate to Sheila. However, that she is practically living for husband 24/7. Her altruistic ability is what I desire. My mom has declined immensely since relocating her from Mississippi to Texas. The journey is difficult. I concur the loneliness can be overwhelming. Sheila hang on to the Lord Jesus unchanging hand.🙏🏻🙏🏻🙏🏻🙏🏻💚💚💚❤
I hope a spot comes open in a special place for him as you need help and have to take care of yourself. You don’t have home health care available - you can visit him often. Some of these places have great staff. Take care Sheila you have done a great job for your family. My mother had to stop caring my my brother who was an adult and in her 80s she had to face she was not able to lift and care for him, as she may have injured herself. A plan was made and family visited him. You must take care of yourself.
For Sheila, I really appreciate your first-hand experience! Thank you very much!
Dear Sheila..you are courageous, brave and loving. Thank you for sharing your heartbreak and triumphs with us. I am often shaken up, scared or diminished by my husband’s negative behaviour. I’ve finally realized his aggression is not my fault and not my responsibility.
Luckily I can find activities that give me some feelings of happiness and “normalcy”. Even just getting out for a 30 minute walk lightens my mood. He is still safe for short periods on his own in the house.
I am grateful that a home care person comes every 2 weeks…. I want to make sure my husband knows someone is coming. He doesn’t want any help.
Keep looking for any help, friendly visits, online classes, prayer groups or outlets you can find to keep your spirit up. You’ve are a marvellous wife and mother…. You can direct that love for your own well-being.
My husband has dementia and I am struck by his negativity. It was reassuring to me to hear your comments on that. I am sorry you are having to deal with these challenges. And I hope you hang in there.
My husband suffers from Vascular Dementia, adding to the fact of being of lower intelligence because of a seriously abusive childhood. He has been diagnosed for around 4 years, but for twenty years, he's been obsessed with aliens and UFOs. He's losing some of his skills, I no longer let him drive. He spends a lot of time alone. There's little conversation. He's becoming difficult to get him to shower. I am 7 yrs older and suffer from COPD. I have made a method of his medication and meals. Ritualizing is what works now. God bless all us caregivers!
I'm going through a similar situation and except that I have not support from my family; I fear they don't understand at all. I forwarded this video to several family members in the hopes that they could get a glimpse of what I'm dealing with while taking care of my mother. My tears finally came out while watching this video, therefore I'm so grateful to you both for sharing. I began getting counsel from a professional because I feel I'm carrying the world on my shoulders and felt like I was about to break. Thanks for all the tips you shared.
I’m so glad I watched this video. My father has vascular dementia (also had mini strokes) and has aggression. He lives on his own for now (I have a security camera in his studio apartment so I can see him when I’m not with him to see how he’s doing) and I come a few days during the week to clean for him, grocery shop, laundry, etc. I’ve seen on his camera him cursing and acting like he’s fighting someone.
This video helped me see I need to start researching into what resources are available if when he goes to see a neurologist again (first time he showed he was angry for being there) if they say he shouldn’t be living on his own.
Amazing interview! My heart goes out to her and others!
My dear Shelia you are so amazing to be so strong!! You are a wonderful person!! Stay grounded it won't be forever!! Love and respect Tamsen Roberts in Riverside California
YOU are doing wonderful as a caretaker!! Trust god, never give up.....I am taking care of my mom with 0 help or even phone calls from my 3 siblings and their spouses, 13 grandkids.....ONLY mine help.....its heartbreaking! and knowing that our is considered "generational dementia" (my moms dad and several siblings also suffered this horrible disease)..............BUT YOU ARE DOING GREAT! I am so glad I found this site!.....
I hope you are ok ❤
Caregiving at home for a dementia patient, usually a family member, is one of the most emotionally and physically draining things a human can ever do. Yet it can provide us with some of the most exquisite experiences of love a human can have. We are incredibly short-sighted in this country in giving medical coverage and assistance for it. I think it comes from the founding century of the nation when we had to push on under any circumstances, ignore all weaknesses and focus on our goals. Time to recalibrate our priorities.
Thank you Sheila for sharing your life and your lessons. You have so much empathetic support from all the CareBlazers who are TRAVELING this long road with you.
I relate in so many ways because the ups and downs are so confusing when trying to make decisions. Taking care of myself is likewise a challenge for me since I too live in a remote area where I’m caring for my mom. It’s an hour each way for a trip to the grocery store or any services. Doctors too. And all the care options are such a frustrating miasma of crazy. Nobody wants to come out here to be a care partner. And she doesn’t want to go anywhere. The memory care places are all more than an hour away and that’s totally a major bummer. I want to be able to visit frequently PLUS I was told that I’d still have to take her to all her doctor appointments which seems crazy!
Sending you hugs and prayers and POWER BEYOND WHAT IS NORMAL!
I will tell you this, after watching this and reading through these comments, I think it is very important to make a good decision about where you will live out your elder years. Since most of us will need some kind of help at some point, unless we are very very lucky, it seems being very rural or remote or just in areas without a lot of choices for health care is a bad move. I'm not saying this to make people who are already there feel bad, for many it's not really a choice, it's just how it is, but I am thinking of myself and where I would like to be living now and when I get older. I will absolutely be looking at that for myself. I am in a medium metro area in the northeast US. We have a lot of healthcare options here compared to what I'm reading but it's still tough to get help for my mom. Hearing the rural stories and no way to transport these elders is a real nightmare.
Thank you for sharing. I am a caregiver of my husband and at first I found it really difficult. In the end I needed support because his anger was scary. He has now on new meds and is so much calmer. It varies from day to day and as Dr Natalie says the priority is safety and peace. Like you I can only do this because He walks with both of us. He is my comfort and my friend. His love and peace is my strength. Thank you for sharing. My prayer is that you turn your eyes upon Him and the things of earth
Become strangely dim in the light of His glory and grace. It is so comforting to know we are not alone. Christ is the anchor in the storm.
Sheila,you are an amazing and compassionate lady
God Bless your big heart
What a wonderful person she is and I am glad she has a lot of faith to get her through it. I hope she enjoys the rest of her life.
Put them in a home once they become physically and verbally abusive. No one’s physical safety should ever be at risk, it is beyond the capability of most. A home is the safest place for them and everyone else. I am going through this now with an athletically built 52 year old.
You are a very strong woman, Sheila. God bless you and keep you safe. ❤
It’s about 6k a month as Ive been looking. That’s a steep bill for most.
Dear Friend. Your testimony is so very brave and compassionate and heartbreaking. I witnessed your same struggles when I was a Hospice nurse with my patients and their families and then I walked your journey with my own mother. You are in my heart. You will remain in my prayers. God Bless you and your husband. You are not alone.
I love that I've discovered your videos. I am a caretaker for my husband, who has Alzheimers. I'm already learning. Thank you.
I'm not in America but the journey is the same. The not wanting to go anywhere when you're isolated in a regional area is very difficult. Best wishes to you both Sheila.
Natali you are very caring and a VERY GOOD listener! Thank you so much for providing this avenue of obtaining information--very intimate and informative. I commented on this before, but I feel I will sometime soon be the one who needs a Careblazer. I am creating a Word document with links to your shows, for a lack of the correct word. Again, thank you VERY much!
I looked after my Mother and my husband who both had dementia. Mom got nasty with me, cruel words I hadn’t heard from her before.
My husband insisted I was seeing other men which wasn’t true. I had never been scared of my husband but in the end I was.
Mom died peacefully with a medically death which she had made before she ever got dementia.
My husband died peacefully when his liver and kidneys failed due to his position that he no longer needed home dialysis. I invoked the power of medical power of attorney and granted his chosen death with medical assistance.
It was a very hard few years with both of them with dementia and no way back.
I had to see a mental health worker so I would not slap my Mother for things she said to me.
I refused to argue with my husband in his last few months because I didn’t want our last memories made to be of anger and bitterness.
Sheila, I am so sorry you are going through this. My mom has dementia and dad has Alzheimer's, mom is somewhat caring for dad at home. My dad was such a loving and kind man and has now had a total personality change. He is mean and on the verge of violence. My sis and I are trying to get them in a place. Prayers to you! So glad you're leaning on the Lord! He does carry us!
Lovely interview. God bless you and your husband. ❤🙏🏼
I was going through the same thing. It got so bad (my husband started attacking our special needs daughter who still lives with us) and that did it. He was taken away, put into a lock down unit in the hospital and then sent to Long Term Care. I was told that he had Dementia (no definitive diagnosis) and also has Bipolar Disorder. This all just happened a few days ago. I couldn't handle both my husband and my daughter at the same time. We are not that old and this has been shocking and horrible to deal with. I'm now trying to navigate the system and my husband's placement now at the nursing facility. This is NOT easy. I've had to apply for Medicaid and Guardianship.
It’s not easy getting medical assistance. We have a sister who suddenly was delusional - she says she has ‘dreams’ - but she thinks they’re real. Long story there - but she had just gotten health insurance before her mental state started falling apart. And they pay very little - she’s in an assisted living - but several of us help financially to keep her in an assisted living - and although we won’t starve it’s taking it’s toll on our savings accounts. Her daughter signed her up for Medicaid but it’s been almost a year and they haven’t started paying anything . Most care facilities are over $2000 a month - the fancy ones are $5000! It’s concerning! One month and some accounts are wiped out - how can families afford this and take care of their own needs? The sister in the care facility is mean and hateful to any family member helping financially - she slaps at us , spits on us. We are in our mid 70’s and can’t have her living with us. I’ve stopped visiting her - she’s really mean to her daughter who tried so hard to find a nice that was affordable - barely . It’s a nice quiet assisted living but still expensive. It’s really sad - hard - and depressing .
Praying for you Sheila. Your story is my story. I too have a strong faith and family, this is what gets me through. Dr. Natalie is a Godsend, she has given me more help and knowledge than his doctors.
Dear Sheila, know that you are not alone and there are many of us out here who join with you spiritually. My husband has Lewy Body as well as bipolar one and then he got lymphedema--talk about a combination to challenge my soul and my patience! I think faith has made a huge difference and having a couple of dogs and a cat has really helped to to give him something to do like feeding them or taking them out in a fenced yard. I do have to constantly watch that the animals are brought in because sometimes we'll be going out and I'll go check and they've been left outside. It's not easy at all and in fact I think I have PTSD from the negative parts or whole experience. Sending lots of love and hugs from Texas. We're in our early 60s and this started officially seven-and-a-half years ago but really I was seeing signs a few years before that I just didn't know what Lewy Body was or dementia. Most friends, couples we used to go out with for dinner, his entire family including his mother have all but disappeared. Everybody doesn't want to deal with this foremost and also don't want to interfere. Three people remain virtual friends and send cards and letters so he has someone besides me thank goodness to show they care, it makes a difference. It bothers me a lot if we are 20 minutes late for a doctor's appointment--but it took six hours to get there from start to finish if he can get in a car-- and yet despite knowing the situation, we're continually turned away for being more than 15 minutes late. Finally one of my doctor said last week he is not going to schedule my appointment again so now I am without or healthcare which is such a shame. I wish there was someone who could call him and explain this! He had the same thing happen at a dentist--we were exactly 2 minutes late and the office manager said they were not going to have him as a patient anymore and added me in too. Unless you've been through it, no one understands this stress, anxiety, danger, psychosis, involved in the situation. Again remember you are not alone. Take my hand and we'll walk together
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@rranimalrescue2050 - We really should have a Department in the Health Care System that makes House Calls for such cases or incidents. We have Ambulances. Why can't we have a Health Care Dept that makes House Calls?
Thank you so much for sharing your story, Sheila. Can so relate to your story and wish you all the best. You’re so courageous. So glad you have reached out to others. Big hugs!!
We have had the same experiences and challenges with getting home health care and his acceptance of care. Thank you for sharing, it really helps to know we are not alone. Hugs to you on this journey.
Everyone needs to live and work in safety and these issues must be openly discussed, instead of covered up. Sheila is a brave woman. I hope the local professional community and insurance company can be held accountable when they fail.
While listening to Sheila I so feel for all that she is going through. I have also been reviewing the comments & thank Sheila & all those writing comments; we are being supportive of each other, like we have been close online friends forever. God bless you all today, tomorrow & forever...
Thank you for your story. I want to acknowledge the progress you are making.
Enjoying all care blazer videos as l am only 2 years into this 'journey' it's a relief to know all these things my partner is doing are normal for dementia sufferers. As we aren't married(20 years together though) it's even more difficult to get information on ways to help with his finances like taxes and paying bills. I have finally got an EPOA which once activated will help but now l have to get him to take an MRI for a definite diagnosis which he is refusing. Thank you for the videos. .. they are such a help even though we are in NZ and help services are different.
Hi, I am glad/ mostly sad to hear this story. My 66 yr old brother has been also diagnosed with Vascular Dementia. It was in Sept. This year. Right now he seems to know what he is doing but I still think he doesn’t. He is mean verbally and sometimes physically. He has Homecare 24 hrs a day but he really does not want anyone. But he does need them. His girlfriend is exhausted and we can’t help her because none of us(family) live close to them. This video has really opened my eyes and I sent it to my familly. Hopefully is opens theirs. Thank you.
How many of us, are suffering this tyranny of dementia, I am in my right mind, totally competent , and in prison both mentally and physically to a 91 year old. He was a wonderful man, now he is killing me, I no longer have a life, the verbal abuse is non stop, mercifully he is not physically violent. I used to love him, that's long gone. I think he is desperate to hide his condition, so every error or misjudgement he makes is my fault, he is currently trying to work out how I caused Covid, ok funny, not funny at all.
I caused COVID, too! Eh, we did it together, I suppose.
I feel the same way, although my husband isn’t physically abusive (yet) & I pray he never does, he does do things that cause me real concern. My husband is very argumentative & ruminates. I feel like he does do things to me or animals on purpose to cause mayhem or upheave. If I ask him not to do something, he does it even more. If I ask him to do something, he wont do it at all. He has these ticks he does with his mouth, one sounds like fingernails on chalkboard to me, so ever since I’ve told him this & often have to ask him to stop, he seems to be doing it even more now. In my mind, I know they’re not intentional but sometimes I question if it’s is or not. When he gets upset he will go on & on with it. His responses are often child like or like a rebellious teen. He often has fits like a child. It’s insane how dementia has changed my husband & with each day that passes something new is added or taken away.
He has early onset & was diagnosed just before his 58th bday but I believe he’s had this at least the last 8-10 yrs & progressively getting worse over the last 3 yrs & really progressing over the last 6 months. It is mind blowing how fast he is changing.
I feel like I am in bereavement without an end. I am grieving the loss of my husband every single day, but he’s still alive, so each day he dies a little more but I can never fully grieve my loss or heal bcz he’s not technically gone. I don’t want to lose him but in many regards I already have. I am thankful for every day I still have with him but still question how I will be able to care for him as his condition worsens. I often wonder if I will ever reach a point in feeling as tho I have no feelings for him like so many other women have expressed. That has to be just the worst place to be but I get it.
My dad has vascular dementia and always blames my mum for things also he blags his way out of strange things he says by telling us he was only joking. He's always been a stubborn man and always thought he was right. Never liked being advised anything, so now that has increased. He's not violent at this stage but he has always been a very quiet person, I don't know if that contributes in some way?
@@dementiadiaries you said about the noises. My dad makes a noise with his mouth like he's sucking up dribbling saliva but he isn't dribbling. It drives me nuts
I see the abuse starting with my cousin toward his wife but she continually breaks “rule 1” and argues with him and gets mad at him when he cleans the countertop a dozen times. My observation is she brings his anger on herself. When I stay with him I don’t have the problem.
Im in SA. Thank you for sharing, I experience the "same" situation, emotions with my husband's dimentia. Only my relationship with Jesus keep me going. Blessings Adri
After someone is violent even once you are constantly watchful and it creates a constant state of increased adrenaline. I lived the two years waiting for a residential school for autism for my daughter in fear. Six months after I placed her I was diagnosed with PTSD. Now mom has dementia and she chased me out of her room brandishing a chair, legs forward like swords. She now triggers my PTSD. Try to remember that even if you have a good week he will repeat those behaviors again and it may be worse. Frugal is nice, but please fight for yourself as strongly as you fight and advocate for him. Use the insurance that you paid up for this reason exactly. I didn’t make it to a dr appt for nearly three years and have fusions in my back exacerbated from restraining my daughter. Perhaps you will come out the other side fine, but don’t take that much risk. Everyone’s quitting point is different, but consider that sooner rather than later could be a better choice to using up everything you have and all that you are. I hope you have a blessed Thanksgiving, heaven knows you deserve it!
This story has made me cry because it's almost identical to mine and my husbands alzhimers journey.
I recommend looking into autism self-advocacy: consider counseling and understanding your autistic daughter: restraint can be DEADLY for autistic people
do your research: I beg of you, it only gets worse if you continue this behaviour
how would you feel if, whenever you were frustrated or not understanding something, annd expressed that somebody would lie on top of you and hook your arms and legs
have empathy, apparently we're the ones who don't have it
(also, reach out for help: youth programs can be helpful, nobody deserves to not have access to the resources and knowledge they need)
@@Beechepisode I restrained her when she was young and I could put her in a bear hug. It was so she could not further injure herself. I was only in that situation for so long because I had to fight my school district to allow the placement. She was never harmed, a thing I can certainly never say about myself.
@@Beechepisode I know the kinds of holds you are talking about, that often has the student prone with arms and legs rendered immobile, that was not what I was doing. But you need to understand that the potential for damage and danger she was capable of. I would bear hug her to keep her from breaking our belongings and from her causing me further fractures and other trauma from shoving me into furniture and throwing metal and glass objects at me. The wheels turn very slow For a residential spot, far more kids than beds. I was trying to survive and keep her safe in a situation that was very far from ideal.
What a wonderful interview. Thankyou so much. God bless you both on the long journey ahead of you.
My Mother has had episodes of bipolar disorder, so dementia outbursts are hard to distinguish from her mental issues, and even from UTI confusion. She is in long term facility, but it is hard to watch her decline, level off, decline. Shelia, I’m glad you expressed this in your video. My heart is with you.
I feel from the bottom of my heart for her. My wife is bcoming exactly like her husband. It is frustrating, and a very helpless feeling. God bless her.
After caring for my dad I learned A LOT! The first thing is the patient and caregiver need to be treated together. My dad became so violent I was terrified of him. We wasn’t able to afford for memory care. Dr’s just would dismiss my concerns and responded with the same thing “it’s just the disease”. If insurance doesn’t pay to put our loved ones in facilities. They should pay to keep their caregivers mentally and physically able to care for the patient ☮️💗🙏
Wow, I’m going through the same kind of things with my husband, but boy, I feel so grateful that I now get help with his bathing and dressing because at least I feel like I get a bit of respite care for those times as he was more aggressive then, as I was in closer contact. He has only been aggressive to one helper and that was a male. I too appreciate being told I’m ok with not handling every situation like I’m perfect. I’m doing my best, just like he is. I did take photos of the bruises, and showed him, he was shocked, until the next time. I can relate to her dealing with health workers, everyone tells you what you should do, but how, no one can tell you that. Loneliness is the hardest, I knit and crochet a lot! Thank you for this 😻
I've just found your channel & subscribed.
My brother n I are taking care of our mom, who's fixing to turn 89, who has dementia. She still lives by herself; but, I'm just next door & my brother is just down the street, so we see her/ check in with her several times a day, although I know there's coming a time when I will need to move in with her.
She's been my mom since I was 3 years old & I'm dreading the day when I walk in the house & she doesn't remember who I am.😢
I haven’t even finished the video yet and I could declare us to be in the Caregiving Sisterhood! Same story, same timing, and same medical history but different characters. My Mom is my challenge and is due to move into a facility very soon. Just walking the same steps through the Caregiving jungle. Please be sure to do an update (when things settle down) so we know you are safe and sound.
Sending hugs and will pray for you and your loved one. My sister has been going through similar issues with her husband. God bless you!
I am so sorry you had to experience this! My mother had Alzheimer's for 14 years before she passed of a heart attack. She never turned mean or violent. She didn't know her children at the end, but always knew her husband. She was content to sit in her chair and visit her children and grandchildren that came often to see her.
My sister died of dementia after 20 years. She never became violent. Her last years she was in a care facility and did really well.
I think for us care blazers learning to let go of the unearned guilt and prioritizing our self care are our toughest obstacles yet also our salvation if we master them both!
Listening to your story, my father is going through the same thing. My mother was diagnosed five years ago. It took forever to get help. ( living in a small community) also during Covid. Long story short, just got her placed in long term care. It’s only been two weeks. My mother is also agressive at times. It’s difficult. I m glad I found care blazers . It has helped me to understand the disease better, and ways to cope with different stages . Hope you get the help you need.
Very sad, but true. Could happen to anyone of us. Scary, so enjoy your life as best you can. Sheila you are a Saint. ❤
So informative. Thank you, ladies.
Her story is sad, but there’s no room for violence. Sounds like he needs to be in a home. My sister is in the same situation and denies the danger she’s in. It’s sad for everyone
My Mother had dementia before she transitioned to be with the Lord on
4/1/2022
I retired from my job of 36years to take care of my Mother full time the last 18months of her life in my home. I'm so glad I did, it was very challenging but worth it to me.
there needs to be better safe guarding for caregivers, they need looking after and protecting as much as the person suffering from dementia. Its so sad to hear this.
I can totally relate..ive been looking after a pt.w/ dementia & i got hit at my face with the key chains; threwed at with bottled medicines,got hit & punched ....but ive been with him for 15 yrs..he trusted me before..we had many good yrs together..
26:35 redirecting was helpful with mom sometimes. Also, a couple of times we acknowledged to her; “yes, I know this is hard (or wrong), I’d like to fix it and I don’t know how.”
And no one deserves this, you are doing the best you can. You are doing the best you can in a very difficult situation.
Everything you have said l can relate to.These care blazer videos were a god send just when l needed them.l cared for my father who now is in a care home just short distance away from my home.You take care of yourself your doing a fantastic job.
I’m living this! Her story is heartbreaking!
Before this video even gets started, I just wanted to send my strength and my hope and my peace to this lovely lady because just from the description, I can tell you that I know it's how it feels. My husband had early onset to dementia but had been misdiagnosed as hav😮ing bipolar depression because of his young age. Early onset of dementia is rare according to some doctors. His personality changed greatly. From a sweet, loving gentleman to an angry man.
And based on what I see and read nowadays I can't help wondering how truly rare it really is. I wonder if it's just not being caught because the mindset of the medical professionals is that they're too young, so it doesn't get diagnosed. It is true that bipolar disorder doesn't get diagnosed in some folks for a long time but the reality is that anyone with bipolar knows something was wrong from an early age, even if they didn't know what it was. Deep down, you know there is something that is at least different. To suddenly develop bipolar disorder is highly suspect. I hope this becomes more easily diagnosed in the future.
@@jenniferloftus2363 actually he was diagnosed years ago. But what he's now going through... this isn't bipolar disorder. This is way different. Won't remember why he's going to the Dr. Becoming very unemotional yet 🤔 falling apart and not knowing why... failing a cognitive exam 3 times.
Thank you for sharing all that. I went thru almost the exact same thing with my husband of 58 years…and in the same time frame. Dr Natali really helped with good advice. Jim died in 2020.
Be kind to yourself Sheila. You are doing a wonderful job caring for your husband but you must care for yourself and your needs too. I worked in a care facility for people with dementia and too many times saw emergency admissions as the spouse had reached breaking point physically and mentally. You are doing the right thing in making arrangements for your husbands long term care in a facility NOW because it is the place he will receive the care he needs/will need as his condition deteriorates. In my experience it is totally normal for the spouse to feel (totally unwarranted) guilt for doing so and wonder if they could/should have waited longer. Your husband seemed to be a lovely man before this illness took hold and im sure he would have wanted you to do whatever it took to protect your own health and wellbeing.
If he is violent, the care home won't keep him. They will evict him. I (and my father) lived through this. A woman sitting next to me on the plane said her father was evicted 12 times from different care homes before the moves finally killed him. She said they exhausted all the facilities locally and had to go out of state. She said if she told the facility everything up front, they wouldn't admit him. So, she had to hide his past at each home, just to get him admitted! I experienced something similar with my father. Even though there were ways to avoid the violence, the care homes are so strapped for caregivers they can't do anything special for anyone. (And the caregivers they do have are woefully untrained and inexperienced.) The name of the facility game is You Get What You Get And You Don't Make A Fit. But having said this, the eviction and DOZENS of ER visits the facility forced on my father (due to violence around being washed and changed) killed him in under a year. And, honestly, a fast demise is a mercy with this disease. So, ultimately, though it was brutal, at least it was shorter than my mother's journey (also with dementia).
This is what happened to us when my dad was alive. He got kicked out of home after home for violence which was super sad b/c he was the most docile, loving person before the dementia. They wanted me to put him in a psych hospital or send him out of state and I couldn't do it. Thankfully, we did find a very, very small home that would take him and I think just the amount of moving made it so he lost the ability to walk which took some of the umppphhh out of his hitting and kicking so he was able to stay until he passed away. Like you said, I was relieved when he passed. It was pure hell for him.
Thanks. We didn’t know mom had gone off her meds. She used to beat me up so, I called the police (twice!). One day, mom couldn’t stand up so her health aide called Emergency. I called my sis, a lawyer, for help. She blamed ME then, post-hospital, took Mom&Dad overnight & placed them in a home out west, near her. It’s been HELL. Eventually, a phone company gave me their new phone number(!!). I have been calling Mom&Dad regularly. I tell Mom I love her and sing to her a lot🙂. Great luck to all🌬️❤️🩹🕊️.
I admire you so much for your strength and dedication in caring for your loved one. You are a strong and compassionate woman and a good role model. I thank you.
I think my husband is in the beginning phases of some type of dementia. I recognize some of the things she has mentioned in my husband. It’s so scary knowing that this is going to happen eventually 😢 We’re in our late 60’s.
Gayle I think my husband has some type of Dementia also. It's getting harder everyday. And the anger is bad.
ANY changes in behavior or personality in an older person need to be taken very seriously and they can and do often indicate a serious underlying health condition. So many folks think well, he's just getting older, etc but usually people don't change that much with age. I hope you can get some help. It's so hard in the very beginning because the person can usually fool the rest of the world, if that makes sense. Even the doctors don't see it in the beginning. That's if he's been going to a doctor regularly anyway. Lots of men don't go. Sometimes it's an insurance thing, which is so sad and should not be, but even with insurance men are less likely to go to the doctor.
Research Frontaltemporal Dementia, FTD