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My wife was diagnosed with Alzheimer’s about five years ago. At first it was frustrating to see her misplacing things, not finding common household things, losing the ability to use the phone or a can opener. I am seeing a therapist who helps with my stress and I’ve accepted that my wife won’t be the same, and I’ve developed strategies for communicating and working with her. My main concern is the painful frustration she experiences when she can’t do things that were simple a few years ago. My therapist helped me find a counselor who works with dementia patients and she has really helped with my wife’s anxiety. My main focus is creating a home environment for my wife that has the least amount of stress and confusion. And to remind myself that this is someone I’ve loved for several decades and as caregiver I’ve committed to being there for her. And yes, I take care of myself too.
Thank you for your comment. It meant a lot to me. I am without help on my care giving journey and have to handle all the stress, confusion, uncertainties and whatever other emotions there are. We have 2 children in their 40's (girls) but they don't want to become involved anymore. They want to put her in a care giving facility which will be traumatic for my wife. I also commit myself to care for my wife by creating a home environment as long as it may possibly be. She doesn't want other people around and tends to be paranoid as far as other people are concerned. That means I have to take care of the household responsibilities like meals, washing, cleaning, etc. What the future holds, I can only guess. I know it will not be easy as this illness has only one way to go. I take it day by day and just do my best. Thanks again. In a strange way, it does help.
@@DementiaCareblazers thank you for the videos and so much information ! My care giving journey has only just begun, since my partner was diagnosed with Alzheimers 3 months ago. His memory is quite bad and he has lost interest in many things. Our relationship has changed a lot and it was worrying me,but now I understand that it may have been the beginning of his Alzheimers. The uncertainty of this journey and the worries for our future are on my mind all the time. I just take it a day at a time; that's all we can do. After the diagnosis we were contacted by a person from Dementia Australia, who put us in touch with another person from the Dementia association, but in our area and she has been so helpful in getting more I formation. We got loaned some books about the subject and our GP has been extremely helpful with suggestions of medications and well timed check-ups. Care blazer videos are very helpful, thank you so much. Carla
@@friedrichswart3235 we’re climbing similar mountains…I’m working with our primary caregiver to learn what resources are available when the time comes for more help. Medicare should be able to help with some of that. Things to learn and prepare for…
I struggle daily like everyone here does. I take care of my disabled, bed ridden wife so therefore have the responsibility of the house, bills, cooking, cleaning etc. And my Mum lives alone and has Dementia and I am her primary care giver as no other family member wants to step up. I do Mums shopping, pay bills, make appointments, etc, we all know the drill. I lost my Dad when I was 14. I found him dead one Sunday morning so with me being the eldest child felt responsible to look after Mum from that young age, and I always have. I have always been Mums back up, so to speak. So yeah, life gets rough when I am sometimes expected to be in two places at once. I do what I can to the best of my ability, but in all seriousness, I'm not sure where I'd be without these videos, as I am on my own in this journey. I can't thank Careblazers enough for the help they provide not just to me but to so many. Stay strong everyone, and remember, you, are not alone. ❤🤗⚘
When the memory Care house I had my husband in said they could no longer care for him, I brought him home after 6 months. How doctor said he qualified for hospice. After 6 months hospice said they would extend him for 2 months but if there was no decline they would live discharge him from Hospice. Now I am on my own. I lost his physical therapist, massage therapist, 2 nurse visits a week, his social worker, pastor and music therapist. Also lost all of the equipment and supplies they provided. I appealed their decision but they denied it. Unfortunately, Medicare has one set of criteria for all diseases. My husband is dying every day. He can not bear weight, feed himself and utters only words. But because he smiles and has great skin condition and has gained weight since being in the care house, they say he is not dying. What a pity they are abandoning him in the frailty of his last days. Luckily he is a veteran and the VA is helping me through this. I feel for those who do not have support. Dementia has a different decline than cancer, but these patients need hospice just the same. It's their right yet they are denied. Shame on Medicare.
@@user-mf5nf5ok8m I went to feed him dinner one Saturday evening as I always did. I went every breakfast, lunch and dinner as the care house was only 3 blocks away. When the aid brought him to the table, I could smell he was wet. I reached over to fell his pants and they were soaked. I said to the aid, do you know he is soaking wet? She said she didn't have anyone to help her lift him. I said, how can that be my problem. I am paying $5600 per month for you to keep him safe and comfortable and this is neither. She was very offended and turned it on me. Said that I verbally attacked her. We were supposed to have a meeting Monday morning to iron things out. But the first words out of the Administrator's mouth were, we can no longer take care of your husband. I did not do anything wrong, merely advocated for my man. Keep in mind he had 2 UTIs in the 6 months he was there. One of which went septic. He was in intensive care for 11 days. I administered 35 days of IV antibiotics get rid of the infection but he never walked after that. I have had him home for 10 months now and he has never had a UTI. I felt very betrayed by the whole thing. I took fresh baked bread to the residents every morning. I did dishes after every meal so the aids had more time to spend with the residents. I helped cook and became close to all of the workers and residents. That one time I spoke up, they kicked us out. It turned out to be a good thing. He was so much happier when he came home. Though it is hard on me physically, I am financially, spiritually and emotionally better too.
@@tatyanaj64 Yes, what I have now will be a home based primary care through the VA. But the nurse will only visit once every 3 months and the doctor once a year. For some reason, it is taking a long time to get him in the program so it hasn't kicked in yet. With some digging though, I found out they will give me palliative care as well. Not quite sure how to use their services yet. Since my husband is only 10% disabled for hearing, his benefits are limited. They will send a bath aid twice a week and give me 13 hours of respite. They also will provide diapers and pads. It seems to be coming together but just won't have the 7 professionals Hospice had working with him. I miss their support so much.💔
There is a European story of a messenger travelling on foot to the next village to take a message. It starts to get dark so he settles down by the roadside. He takes off his shoes and points them in the direction he's going so he'll know when he wakes. Someone in the night walking kicks the shoes and puts them back neatly but in the wrong direction. When he wakes up and sees them he walks that way thinking its the next village he's come to, but is amazed to see identical people in this "next" village. There's even a house that looks like his and he knocks on the door and is greeted by a woman who looks like his wife and some children who even know his name. It takes weeks for him to begin to believe it might be his village and family. They convince him to stay, but even though things look the same, from then on he's never quite comfortable or sure that it's his real home. An old story but very illustrative of how someone may feel. I told this story to my husband who loved to tell it himself, when he woke up recently and shockingly suddenly asked where he was. I said : you're at home. He said : l thought things looked familiar!
All of those are so true and I don’t know if it’s a catagory but my husband and I were a team and I have had to take over every responsibility in the house now - managing our finances, paying bills, doing the taxes, balancing a budget navigating all home repairs and maintenance, every decision big or small now is my responsibility. Plus all the things I was already doing So not only are you now responsible for caring for another person you’re also now responsible for everything they did or you did as a team
That is exactly what I am finding. He used to do so many things, but now it is all on me. Long story, but after 40 something years of always owning a home, and 8 years of living and traveling on a boat, now we rent a house because I know he can't take care of things like he used to. Even at that, I am in charge of everything and he is very dependent on me. Very tiring.
God bless you for giving him good care. I know from experience it is very demanding... especially when you don't feel good. Lean on the strong ones during those times. I chant many days, "I can do all things through Christ who strengthens me." His grace is sufficient. Sending love and prayers to you.
In my moms case, who has dementia, my Dad was a controlling person with no patience to teach mom anything. When he suddenly passed she was lost. She did not know how to do anything and got herself into some real trouble, and was also taken advantage of in a huge way, that cost her nearly all her savings. She refused help or would turn advice away, because she wanted to prove she could do it on her own. She also lost all their long time friends. It almost felt like after my dad passed she took on his stubborn, miserable personality. She was also angry because she had convinced herself he had no died, but ran away with another woman. She started giving away all his things including very expensive tools. Dementia took nearly everything from her.
Me too. I feel it is like going back to work as I approach 80, I have so much to do....as well as caring for my husband. He was an engineer, the practical half of our marriage. I am on a steep learning curve about house repairs, car maintenance etc on top of all else. Margaret UK
My husband just turned 56. He was officially diagnosed 4 years ago. I am 42.I still work so need to be away 50 hours a week. The only help I get is from my 74 year old father who checks on him while I'm at work. I sleep less than 4 hours a night because he is constantly waking up, and just stands in the dark. Also, starting to pee before making it to the toilet. I'm broken 💔
So sorry that you are going through this My LO has begun showing physical disabilities- and is getting diarrhea that he cannot control prior to reaching the bathroom.
I feel for you. My mom's doctors want her to go to a day center at least 2 days a week both to give me a break and to get her out and socially stimulated but she refuses go go back after 1 visit. She doesn't feel like she needs to be there. I have kidney stones and I don't know what I will do if I have to have surgery if she won't go to the day center, she can't be home alone. I don't know what I will do it is so isolating. Clearly we are not alone but we are isolated in our similar bubbles fighting the same challenges but we have little energy left to gather strength and support from each other because we have so many daily responsibilities to juggle. Hang in there, we truly feel your struggle
I used the same language ("I'm broken") to describe my exhaustion, my frustration, my not knowing what more I can do. YOU are not broken. YOU are amazing, and you need to talk more kindly to and about yourself. It's the situation that's broken--working full time, little to no support, not being able to sleep, etc. I get it, but you are not the problem; you are not at fault. You are, like all of us, doing the best you can. Consider yourself hugged.
My mom has been in memory care for over a year. At a support group meeting, a lady shared something helpful. She had been visiting her mom frequently, like 2x/week, but she noticed it only reminded her mom that she wasn't remembering things like she should. The lady now visits once every two weeks, which allows her mom to have her own routine with her friends and neighbors, and not have that unsettling feeling. That was reassuring to me, particularly since neither my sister nor I live in the same state as where mom is at.
I am caring for my mother who received a dementia diagnosis 6 years ago. I am struggling with the guilt I feel for planning to put her in a nursing home. I have no life, I cry every day, and live in anger, frustration and depression. I have received no help from my two siblings and I’ve had it. It’s going to be hard, but I cannot go on like this. It has affected every area of my life and is greatly affecting my own health.
You have done all you can, so don't feel guilty about getting professional help for your mother. You have been a great help to her and now you must take care of yourself and rest and live your life. You have done well!
This is my story to a T. I'm sorry for everything you're going through and I hope it improves once you're able to transfer some of the responsibilities to the staff at a facility who are better equipped. I only today made appointments for necessary dental work, my first mammogram (I'm 43 so I'm late) and scheduling a consultation with a chiropractor for some pain issues exacerbated by stress and sleep deprivation. I gained 62 lbs in the time I've been her caregiver due to stress and sleep issues and the fact that I had to take a second job to afford her care. I've been neglecting my own health and well-being b/c I have been prioritizing my mum's care and my own physical and mental health are in shambles as a result. My siblings ignore me when I beg for help. I was hospitalized 2 years ago for a nervous breakdown b/c of the stress and all my siblings sent their "tots and pears" for my recovery, but not a one was willing to lift a finger to share the burden of OUR mother. I've endured thoughts of su1c1d3 b/c it feels like the only escape. I'm trying to prioritize my own life as I have been caring for my mum since I was 25 (18 years...not all dementia, but other mental health issues that impaired her ability to make responsible safe choices) If I had it to do over, I would have kept my distance when I joined the Navy and not returned to my home state allowing myself to be manipulated into being her caregiver. Her poor choices led to a very abusive and traumatic childhood, but empathy and eldest daughter sense of guilt won over and here I am.
I put my mother in assisted living at her age 93. She was becoming unsafe at home and acted terrible at my home. After the initial period, she is much happier there. She was alone at her house and now has friends, and every meal served to her. I also put my brother in law with dementia in a nursing home. He loves it, and has gained weight and thrived. They do well in a care home because there is ROUTINE. Routine is very important for dementia sufferers. If she complains about going there, just say your are making the best decision for everyone, and it is hard on everyone. Be kind to yourself. I also take care of my spouse who has dementia so I know all about depression and frustration, too. He is almost unbearable to be around, and is physically and verbally abusive. So, take heart. Guilt is no way to feel, because you have done your best, and are doing your best, so there is nothing to cause guilt. Furthermore, putting her in a nursing home may be the kindest thing you can do. You are going to get through it all, and be OK. Stress is a killer, so I hope you get support, find someone, even online chats help. Forget blaming your siblings..Mine is a jerk,too, and will never change, so don't worry about it. My mother spoiled my brother all his life, so guess what...he is still spoiled , and is only focused on himself, he has no brain cells to care for others. Advice from an old grandma..... Just do what is right all the time.. You will overcome, and will feel better. Get some sunshine on your skin for Vitamin D, Eat well, watch funny animal videos on RUclips and laugh out loud.. That always helps me. ; )
Thank you. My wife of 39yrs is going through this. Most days she thinks she wakes up somewhere else and doesn’t know me. I try to ground her to home by pointing out the garage/workshop we built, it seems to help. The time and energy to get everything done is the hardest. I tell her I don’t know how she did everything when we worked, I believe that’s her secret. I’m so glad I found your videos.
This video was truly a God-send! ! My husband is 84 years old and has Parkinson’s and dementia. All 5 points are right on target! I was glad to know that my feelings of being overwhelmed, frustrated, and depressed are common and not just me being a weakling!
I care for my 99 year old mother in law my husband was killed in accident he was her oldest son i do this because he can't the problem i have is she gets stuck on something and won't let it go I spent a lot of time asking God for forgiveness and more patience. l appreciate your program it gives a different approach thankyoy
Living in South Africa. My husband has Parkinson's, FTD and vascular dementia. There is no help if you cannot afford it. I've been looking after him on my own and it is hell on earth😢 Friends are gone, church not interested at all. No help with my husband. 😢
Some churches here in UK run dementia friendly daytime sessions, Dementia Cafes, etc. Also 'Singing for the Brain' social sessions. Might be worth checking out other churches and other denominations near you. There are also specialist chaplains for the elderly working with one or two Christian charities. Sadly I hv found over a lifetime of helping elderly people in four church parishes, as we moved home, "out of sight, out of mind" occurs for members of the congegation who grow old and can't get to church and its events, even those who have given 40 or so years' service, maybe in the Choir or Mother's Union, etc. Forgotten. I wonder what Jesus has to say about this. Or what St Paul would write to a church today about this, in one of his letters. "Supporting widows and orphans" comes to mind. The 'forgetting' of the old is a stain on the churches purpose and outreach. Old people have cried when I visited them in, eg a card home, saying "Nobody has visited me from church for such a very long time". My husband and I are slipping into the "forgotten" people as his dementia takes hold, we age, and I am less able to participate in all going on at church. I expect to fall out of view 'ere long. Margaret
@@howardbarnes3714 Glad to hear you have faith. Your heavenly father will give you strength and stand by your side even if everyone else abandons you. Please take comfort in that knowledge!
I’m in Canada, my father has FTD as well. He was diagnosed 3 yrs ago. I begged him to move in with us. He absolutely refused. So our only option was a long term care home. I’m incredibly happy that he refused, mainly because he is now quite aggressive if he can’t do what he wants. It’s not all bad, but I’m a small person, and I could never handle him as I’m 65 myself. I hope you can find some much needed support. In Canada, their care homes will let you book your loved one in one of their respite rooms so you can get some rest or a breather at least. Sending love and blessings your way. 🕊️❤️🕊️❤️🕊️
UK here, caregiver for work and child of a parent with dementia. Our healthcare system used to be super simple as it was entirely state run (from 1945 onwards) and funded through a levy on wages called National Insurance. It was one payment, one system, one organization, free at the point of use accessible to all regardless of means. It was slowly privatized from the 80's onwards and now, part state part private, starved of funding and greatly reduced in accessibility, it is really quite nightmarish :)
I would add some additional changes to the 5 changes: 1- Asking the same questions repeatedly. 2- Mood Swings 3- Bouts of anger. 4- Sun Downers syndrome. Some positive tips I have found effective: 1- Limit how many people visit ( 1-2 at a time) as it is difficult to keep up with more than 1 conversation. 2- Hold hands - this simple method helps bring calm. 3- Play music that is very familiar and sing along. 4- Use humor when possible and stay positive as people pick up on the vibe you put out.
It has been extremely difficult in a😢😢Family situation with my Dementia. And I am trying my very best to live as normal but I struggle very hard to live with Dementia as an every day Person with Dementia. I’m trying very hard to succeed as the Family Breadwinner at home. I’m trying Very strongly
The hard category is relationship changes. LO depends more on me to be at his side continually but I am not emotionally engaged anymore in always being there. Dynamic changes.
Another category that is often overlooked is financial challenges. My mother is in the early stages of dementia. I have had to take on additional financial responsibilities to ensure that she receives quality care. While she has good insurance, there are other financial obligations that have to be addressed. Taking care of bills when funds are low, home maintenance, car maintenance, food, and sometimes other activities that she needs to aide in her well-being. It takes a huge toll on me, but the reward of seeing her thrive despite her condition makes me grateful that I can shoulder the financial load.
I am in the UK going through this with my husband of 45 years. I feel a lot of grief but also joy in that I can make him feel loved and secure and I have slowed down to listen and be with him. He had a fall 2 months ago and that has really knocked him back but the state provides carers to help for a month or so, after that if you have savings of more than £23,000 you have to pay. Likewise if the person has no money or assets the state provides care including a care home but if you have assets then you pay but they can’t take your house if the other spouse is still living in it. Government also gives £400 a month allowance for the carer. We actually have many benefits, medication is free so we are extremely fortunate, also a lot of groups like Age Concern who do a lot so really we can’t complain. Your videos are a huge inspirational help, thank you 🙏
My wife has dementure but in addition she has coped and heart failure. This makes caring a lot more difficult. She also refuses to believe that she has Dementia.
Dr Natali is 100% correct. I was a caregiver for my Mom for about 5 years-until she died. Dr Natali’s program & videos were a lifesaver for my family. I still watch videos and new information as I always learn something for my everyday life. I don’t know how I would have survived without her and other caregivers.
Best $ I ever spent and time I’ve invested. The secret I’ve hit on with my 95yo mom is to try to make her laugh when something seem dier. Some days she will wake and have the attitude of ‘I wish I were dead’ (after I get her enough coffee) then I say you were always the last to leave a party. That’s just you! She’ll chuckle and say, yea, you’re right about that. So we try to find the lighter way of looking at this aging. Knowing we’re all doing it, day by day…
I’m interim caregiver for my sister while her husband is out of the country. She has been vicious, threatening, continuously and loudly verbally abusive without even short breaks. There is no way to distract her. The only way to get a break from the abuse is to lock myself in the bathroom for a few minutes. It is constant. I feel my physical health and sanity deteriorated. I have to do this three more weeks and there is NO help. I need help, but there is none.
Same here ! If he is awake, he is cussing me. Which I guess is OK, because that is an improvement over hitting, pushing, and kicking while he cusses. Actually, looking back, anger was the first symptom that reared it's ugly head. Anger all the time at everything or nothing. Most people just think dementia means someone cannot remember things. I used to think that too.
I am experiencing that people doubt the extent of what is happening with my husband so I feel like my experiences are discounted. I feel like I am disappearing in all of this.
I too was told by friends that he seemed fine to them and that they did not see any of the changes I was seeing. As time has passed, friends are seeing my husband’s challenges with Dementia and so they are staying further away and I am feeling quite isolated.
Same here: my partner is mostly doing fine, so I sometimes feel like it's just me who sees these changes. We need to keep social contacts alive though. That is really important for us as carers but also for our loved ones. Find a support group!
Help! My 67 year old husband has dementia, and today we brought my 86 yo mother here who has NOT been diagnosed, but it is clear she has dementia. She has taken a sudden turn in two weeks, then three days ago fell - 5th bad fall in a week - and broke her arm. She now requires two person assist for everything, and there are no rehab beds available. My dad can’t care for her so she came here. My husband can still be helpful, but we ALSO have our own 5 (adopted) kids here who all have significant disabilities. Drowning……I am drowning.
May God give you the strength you need to deal with the many challenges you are experiencing. Also, may He bring people into your life who can be of assistance. Peace and blessings to you, my dear.
@@jackyhorn6709 thank you. I don’t WANT to do it all. But, the help takes time to establish. My sister and I had my mom remitted to a different hospital, so a doctor there could write orders for a TCU. She moved there yesterday. We’re hoping to get two weeks there. When she comes home it will be with nursing and other supports. Now if I could just hire a cook. 😀
I've written you before and you have been so helpful in answering my questions. Thank you. Yes,these I have experienced all of these with my Mom, Linda. Since reading her sight has decreased to abiut 12 inches in front of her from her to the object and the span of her parifrial vision has decreased, I am more patient with her. She is gradually losing her sight. She has Lewy Body Dementia and doesn't have a full conversation because at Tim's she will tell me how many times she sees loves ones who have passed on or a bunch of children come in and are looking for someone. She also sees this white tiger with black and white wings that comes to protect her. Also,her Uncle Dan passed away about 2 months ago has visited her several times as he is working on scheduling her flight soon. 😢 Heavy times. I have lost so many people in my young life, but losing my Mom like this is the worst emotional pain I have or will ever feel. ❤😢
From Singapore: The Singapore geriatric healthcare system is good and responsive, with many programs for persons with dementia. Most important is to diagnose the dementia patients for thyroid issues, blood sugar, blood pressure and other medical conditions early. A 6th area where Caregivers must be effective in is knowing how to feed their charges with prescribed medications properly, feeding their meals appropriately and how to maintain their personal hygiene conditions in the home where they live. These are very crucial skills to pick up as a personal change.❤ All the best to Careblazers! Thanks for this video!❤
Changes of relationship . My husband is going through with that with his Mom. She has been living with us since April 2024, when her eviction from her apartment was official , we only have a week of knowing about it.. That’s the time they found out something is wrong with her. She doesn’t recognize my husband as her oldest of her 2 sons. He is doing everything for her but she doesn’t believe and so he starts not care to interact with her. He doesn’t want to talk to her. And if we show show her our wedding picture, she thinks it’s her ex husband and would say mean words and call him a cheater. My hubby had to reintroduce himself and show her his ID At times , she would then believe but next thing you know it , she forgets. He is handling the health insurance, got her covered with MediCal which thank goodness covered the hospital outpatient bills.The legal stuff still needs to be done. It’s hard. Thank you for helping us caregiver.
I think the physical change that surprised me the most is the drastic posture change in my mom. Poor little lady is so curved forward. I’m sure disc degeneration is part of it but, think it’s from dementia also. The vision difficulty also surprising.
My mom too ! She is very curved over and has vision problems hearing problems. She wears hearing aids and has glacoma from her dementia/ Alzheimers. She also has diabetes type 2 , and high blood pressure. She drinks alot of diet coke and she has her whole life . Tab, pepsi cola etc. I try to monitor it but its hard. She lives alone still in a small townhouse very close to me 5 minutes away. I believe her Alzheimers is from drinking these chemical drinks every day for 80 yrs ! She is 89.
I care for my parents, both with dementia. What I run into quite often is that they (one or the other) turn on me. For instance if they lose something (or break something, which they do all the time) then I'm blamed for hiding it, or breaking it. This paranoia happens quite often and I fear that at some point I might need to be replaced. But I have heard about them turning on their caregivers, and apparently its not uncommon, but I would hope I can see this through to the end with them, but I'm not sure that will happen.
Boy that’s tuff. We are just dealing with a very difficult mother in law with dementia. It’s almost you have to keep making records, take pictures and make a diary. I really wanted to do that but we still have a full time job with responsibilities.We have to lock doors here and there.
Thank you for this! My husband seems to declining fairly quickly with Lewy Bidy Dementia and Alzheimer’s. Disturbances at night and loss of sleep have been the worst impacts for me. I’m grateful for a great geriatric care team at UCONN Health Care. Meds and a week long employment of a nighttime caregiver helped although it is very costly. I pray everyday that God will cure him and if that’s not the plan that He will stabilize him in a strong place. ❤
I'm that person being discussed here! I find this sad, but very helpful! I want to share something helpful (to me.) I have recently repeatedly began NOT turning the kitchen stove off. I knew I would probably find some sort of signage on Amazon reminding me to turn off the stove. I certainly did. There were several types of stickers, and I found the right ones for my stove. No worries. They can be removed with a product easily available.
My spouse has dementia, but I have stress and forget to turn it off too, or forget I have something cooking. I began ALWAYS setting the timer on the stove whenever I turn on a burner....then if I stir something, I reset the time again. Try that. ; )
This video was very comforting in breaking things down for me - I’m just starting the journey with my mom but already it’s starting to feel overwhelming with trying to navigate services, deal with her depression and changes and the “support” of my family which has so far been occasional texts of encouragement. This channel in a small way helps me destress and feel less alone. Thank you.
I struggle with anger at my wife because she won’t go to any doctor and needs medication for agitation. As a psychiatric social worker it feels like a huge failure that I know what she needs but can’t help her. I have seen 2 lawyers but in Illinois it’s impossible to force help because she has no medical records for the past 4 years and thus no diagnosis. I’m now taking antidepressants.
Anger and agitation were the first symptoms of my spouse's dementia. ( By the way, she is your wife, not your patient, and cannot be, so don't feel like you failed.) My spouse thought he was fine, but I finally convinced him I was not going to put up with abuse any longer. I said....'Ok, I love you, but you are not the same person now. We need to figure out what to do about it because I will not take it any more. " The doctor put him on an antidepressant, then, later prescribed a "chill pill" called .respiradone. a very low dosage which helped a little. The only approach I had was to adapt my reactions since I could not change him. I call it the "Don't care" coping skill. Don't care what they want, what they like, what they want. Just make decisions based on taking care of both of you, no matter if they like it or not. Such as, I took the car keys, hid them, and never gave them back to keep him from a terrible accident. I changed the computer passwords, and I took the checkbook and never gave it back, to keep him from giving money to scammers, etc. I did what was unpleasant, but that which had to be done. He had no vote in the matters, since he was no longer dependable. He became angrier and physically abusive, threw fits like a baby, etc. When he gets mad that I am in control, I just say, Yes I am, and I take care of both of us. When he says he is sick of me controlling him, I say, OK you can leave. Who do you think will take care of you besides me? I say all this to encourage you. Maybe you need to get tough? My spouse did not want to go to the doctor because he feared the diagnosis, and didn't want it to be official. Maybe that is your wife's situation? Anyway, hope you figure something out. Be good to you. A little bit of the 'Don't care" what they think so much is quite healing in my case. It helps me care for myself, instead of constantly struggling to please someone who is unpleasable. No part of illness is fair.
Hi, I live in Australia and we have excellent health service which is free. We can get help at home to help with basic things such as cleaning or they can pick up patient take them out for the day which is a great help. It's still a very difficult time.
Yes, in Australia they seem to offer a lot of support. We are in Tasmania and there is a new Dementia Village where people can go for respite. We are so fortunate!
Just hearing you mirror ALL these things that are happening is extremely helpful. Im in Canada and yes, the healthcare system is difficult for me to manage as my father lives in Quebec and I live in Ontario. Most people are so helpful, but it seems complicated in the sense that there is no clear path to take for my dad. It all started when my mom passed away and my brother was abusing them financially. He left the house but my dad took him back, hoping he had changed, but no. It got worse. When it became physical, I stepped in, the police took my brother away and put a restraining order on him. I have been trying to rebuild my dads confidence. He wants to live in a huge house by himself, so I am driving myself crazy trying to set him up for success, although I know it is not the best place for him. My brother had taunted and teased him about being forgetful, ect, so its a difficult subject to navigate now. Such a scumbag. I have been away from my kids for 8 months and need to leave soon. I know its a lot for him, but I wish he would just move near me, but I know he needs to see that he cant take care of the house on his own and it breaks my heart.
Let's see....So you were strong enough to save your dad from the brother, so why set him up in "not the best place for him".? What may be driving you crazy is that you know it will not be a success? In my life, decisions made because they are more convenient, always come back and bite. What I have done in a similar situation is just jump in and have the tough conversation. You may feel relieved. Throw out the pros and cons to your father, lovingly tell him what you think is best for him. I bet he will respond to your advice.
#4!!!!!!! Frustration barely describes the experience. I feel like no one ever talks about this! It’s like we need a college-level course in how to speak the medical language of dementia and dementia care.
Yes, to all the categories. We are not far along this journey but are at a stage where I don't feel comfortable leaving my husband for more than a few hours at a time. Recognizing that it will become more and more difficult to do things away from home, I have been working on developing hobbies that I can do at home that also have an online connection with other people. I belong to an online writers group that share very short stories every week. We leave encouraging comments for each other. I have a flower and vegetable garden to give me a pleasant activity outdoors at home. To add a little more interest to that hobby, I enter some flowers and vegetables in the local Fair once a year. I do watercolour painting and have an aim to participate in an online exhibit. I have phone conversations with my children who don't live nearby. These are my lifelines so I don't fall into depression. For me, finding activities that allow me to forget about my situation for an hour or so helps the most with my mental health.
I have experienced all five of these challenges with the exception of the HealthCare Services. I live in Ontario Canada and so far have experienced excellent help and care. I also think Finacial challenges may be experienced by some families. I have received amazing help through Careblazers reguarding how to respond to these challenges as well as emotional support. This was an excellent video.
@DementiaCareblazers Dr. Edmonds, would you please do a video on the physical and emotional strength it takes for a son to change his mother's adult diapers? Or, conversely, a daughter to do the same for her father? I think this is a topic that is rarely addressed by experts but is extremely challenging and relevant to careblazing!
I know it's not exactly the same as what you're describing, but I had to clean my mother's Foley catheter setup including her private parts twice a day and empty her catheter bag at least as often for 6 months. Much of the reason that she had a catheter in the first place was due to recurring UTI b/c she couldn't empty her bladder due to a prolapse of her bladder or uterus. It took doctors nearly a year to figure out that that was the cause of the frequent infections b/c none of them thought to look under the hospital gown to check that her anatomy was as it should be. Whatever prolapsed organ it is is literally hanging out of her V. Even though I have power of attorney, she flat out refuses any kind of surgery b/c she doesn't trust doctors and thinks that she needs to keep her uterus b/c she's not done having kids. Not to mention that she isn't going to understand the aftercare of having a surgery done and has on multiple occasions pulled the catheter out claiming that she can pee just fine on her own or she forgets what it's for and pulls it out like it's a splinter. She's thankfully in the hospital now awaiting assignment to a LTC facility, but as a non-medical-professional having to provide that kind of intimate care and get up close and personal with my mum's nether regions was 🤢🤮
I got upset with my friend that I didn't sign up to be a caregiver for,,but it has been resolved,,but I find tons of knowledge from you and your videos,,3 years in 77 year old nice gentleman,,vascular,,
Thank you so much for all the good points Natalie. Something I would add on the line of healthcare…the staff was wonderfully supportive, BUT, no one told me what to expect after my husbands stroke at 64. How comforting it would have been to have someone point out a few things to expect. I think hospitals should have a program for caretakers in these situations. I have been meaning to contact the company that owns our hospital and suggest this. Thank you , thank you for what you do! CErick
My wife Eva would get very angry, swear at me witch she never did in all the 54 years we have been married. She would tear up the house , she would say that someone stole her glasses and cut her eyebrows, and started speaking in German all the time. Eva is from Austria. Would not get into the car and said the garage was a dungeon. At one point I was going insane. There were some good times when we would sing together watching music videos, and she would dance, but then she would just change into somebody else and be mean again. Jekyll & Hyde. I took videos with my phone of the good times and the bad times. Family members did not believe me sometimes. I told them why don't you come and live with us for a few days and see whats going on. I had to have surgery so we put my wife into a memory home. I went to be with her 10 hours a day for five months. It was to expensive to stay there but she qualified for hospice and we went home. Now she sleeps most of the day, does not walk anymore and she gets a five day respite every 60 days to give me a break. Everything you have talked about and more has happened these past 6 years. I take these movies of her thinking that maybe I could be of some help to some one when this is all over. This Dementia is terrible and you have to get help before you fall into a rabbit hole and never get out
My spouse's daughter said, "I talked to Dad on the phone, and I didn't think anything was wrong." which tells me they think I make up all the crazy things I have told them. They began avoiding us. I hear you about them changing into someone else. In his mind, my spouse thinks I am his worst enemy in the world, just out to control his every move.. when actually I spend every moment trying to keep him from hurting himself and tearing things up.
On thing my dad has is anosognosia dementia. It took me a long time to figure this out & it’s rarely talked about. It basically means he is without knowledge of disease. He also has a lot of heart issues including afib, chf etc. He thinks he’s fine & nothing is wrong with him. It’s not just a denial. It’s an absolute belief nothing is wrong & he is fine. Not sure if anyone else has experienced this.
I have found these sessions quite helpful. My experiences are clouded even more due to my wife,s dementia was brought on by a stroke. This brings changes as we progress through it all. It also added medical issues to add to the care.
Thank you Dr. Natali. I always am finding comfort through all of the advice you give. Sometimes I go on RUclips looking for your advice, and many times I just stumble across one of your 4 or 6 minute talks that share bits of your compassionate knowledge in this topic suited for caregivers.
If your loved one is a veteran, I would encourage you to take advantage of the VA caregiving program. There are social workers whose job it is support caregivers of veterans. They have really helped me a lot on this journey.
Hi Natalie I live in Australia so health care is a bit different here although we have the same problems. Thankyou for your videos they are so helpful as my husband has dementia. You have helped me tremendously in my journey it is heartbreaking sometimes but you give me strength, wisdom, and discernment. Thank you for your help i very much appreciated it 💕
Tell me about it 😞 , but I love my mom and I'm so glad that I opted to care for her . Too bad though I have no substitute so I could get at least 1/2 day off once in a while
I am from Mexico and both my parents were diagnosed with a type of dementia in December 2023. I haven't found any specialist on this. The neurologist just told me the dx, some things to do, but didn't take time to explain the differences between Alzheimer and frontotemporal dementia.
My husband 50 has Parkinson’s for 6 years and mci but also showing dementia symptoms when do you know when put him in a home. I have been feeling overwhelmed and grieving for him .
I reside in Australia. An ex-carer of both parents-in-law with dementia and immobility. I have nearly completed a Bachelor of Dementia Care and co-run a dementia cafe. I just want to ask if your excellent advice in this video can be in written format and freely available as a handout to anyone who has started the carer journey and the public who attend our cafe who can benefit so much from your advice and information.
It is very stressful for a caregiver , especially when putting their lives on hold, or chosing to stay single as very few partners accept the attention goes to the elderly The Healthcare system here is sooo very minimal info regarding dementia. It is down to "oh this comes with being old". No diagnosis or anything else.
Lady, I cannot name one single positive thing. Caregiving is a unending nightmare. Like overnight I became my spouse's parent; he became a brat with the judgment of a two year old. He has become a narcissist, a hoarder, and a wife beater. Caregiving for someone with dementia is legal domestic violence. They can unpredictably hit , push, and kick, and for no reason. My spouse is extremely healthy, but does nothing except cuss me all day. After years, I have learned a coping method called, "Don't care." I don't care what he says, what he likes, or what he wants. I do all the work and make all the decisions to take care of both of us and keep us safe. His daughters avoid us like the plague. One of them told me years ago, "I talked to Dad on the phone, and nothing seemed wrong at all...." Like I am making up the craziness! So, I don't care....they live their lives going on vacations, raising kids, etc. I am a tough old bird. I will survive.
@janejohnson632 I sure do. So depressed, but I'm good at hiding my emotions. It's not healthy, but I don't feel I have a choice. If I'm not here for my partner, nobody else will be there for him.
Please be ready for the first time your loved one doesn't know who you are. Even though I knew my mother had Alzheimer's dementia, it really hurt the first time I realized she didn't know me.
My problem with the healthcare system is that after seeing three neurologist, one of whom is internationally known, they all basically end up, saying there’s nothing they can do. There has been too much emphasis on amyloid as the cause rather than associated with the disease. my personal belief is that this is an inflammation problem and not enough research is being done on that Solution
I am taking care of a mother with post war PTSD and was incapable of mothering. I wonder if another change could be one of a closer relationship between the caregiver and the loved one who has dementia.
@@melaboul5020 You're so right. I like the "I want to remember him the way he was" line of bs. I really have to bite my tongue sometimes, when asked how my husband is doing. I feel like saying, "here's an novel idea...go visit him!"
Our primary doctor gave my wife 10 simple questions that anyone down to third-grader could answer. She answered them correctly and he declared she does not have dementia, but of course she does. So I decided I'd just take her to a neurologist in the Presbyterian "Health" System, and guess what, I'm required to have a referral from the primary. I made the huge mistake of carrying my federal worker health plan over into retirement and as the result we only have Medicare A. So I can't get any medical care for her dementia. We are so screwed.
My 93 yr old Mom obsesses about going blind (or falling in the shower even though she’s got help). Am I right to think that the visual is comprehension loss - such as looking at her watch and being totally off in reading it? Because her vision checks out quite well.
Hi there, Thanks for your question. Here is a video that explains the difference between Alzheimer's and Dementia: ruclips.net/video/HgsK0oFOa1g/видео.html
I can't seem to find anything on an issue with my mom. She talks about wishing she would just die. She feels she is such a burden. When we question if this is her true feelings and she says no she doesn't want to die...what can we say or do? This is very troubling, she currently lives with her granddaughter and granddaughter husband
Anything extra that happens to my mam, infection, pain etc she cries to die all day. Then when i have sorted the problem, she is happy, great with grandkids, friends et , smiling laughing. Emotionally, it is killing me, very difficult.
@jackyhorn6709 thank you for your reply. That does give me another way of thinking. Will pay more attention to that suggestion. You are correct, emotionally it is just another layer of the heartache
The health care consistently lets me down. So don't feel bad when you state the truth. My dad could've had better care. My mother could've lived years longer than she did. But, bad healthcare system in america.
??? QUESTION??? WHAT SHOULD YOU DO WHEN YOUR LOVED ONE TALKS TO HIMSELF IN THE MIRROR, THEN THE RESULTS ARE NEGATIVE? HE SAYS THIS GUY IS FOLLOWING HIM AND HE'S GONNA BEAT HIM UP?
We thought my 83yr old mom has demebtia. But it turned out to be hepatic encephalopathy. .. So the doctor gave her some not-so- expensive laxative meds. And she becomes "clesr" .. we were told hat she simply has to POOP everyday to avoid hepatic enceph.. so many people are being misdiagnosed as dementia or Alzheimers - but turns out to be "hepatic enchepalopathy which is curable - just make them poop daily so that no ammonia will reach their brain.
My mom & are she may have the flu.Because she is so weak she is using the walker.( that’s a miracle in its self.Just in the last 2 weeks she has fallen numerous times. One of times went to the hospital got 3 stitches in her head. Did attribute that to dementia She went to the ER with stomach pain, and staid there 3 days. She also has become incontinent. I have picked her up off the floor with the hoyer at least 7 times. It as definitely been a DROP in her journey. (Health ) Do you think it’s the dementia and probably not the flu. She has no fever. She is extremely weak.?
I am a caregiver not a careblazer i don't financially qualify to be a careblazer because I gave up everything to caretake for my Grandma who it took me 42 years to find as a closed adoption adoptee and because I am secondary medical proxy i don't qualify for caretakers aid and therefore don't financially qualify for careblazer training or any training AT ALL. So I don't see any reason to help an afluent channel when I am disposable and I will most likely be be living in my car in upstate NY this winter so that everyone could get rid of Grandma in a nursing home instead of encouraging her to do her rehab.
Careblazing is a mind set, it about changing how you think about your role. It only requires you taking the time to watch Dr. Natalie’s FREE videos. This journey has been 6+ years for me and I’m telling you her videos have saved my life.
@@marycalmes2217 I'm not saying that when I first started watching miss Natalie's videos that it was not extremely helpful, however she also touts about the community access and help when you pay and you are cut off and excluded from it if caretaking has left you completely destitute and I have a lot to offer the caretaking community as well as to benifit by it so yes I resent that and have every reason to resent being left out of a community I deserve to be fully a part of just on the basis of financial status.
@@songoftheblackunicorn666I don’t pay for any of her videos. What you’re saying doesn’t make any sense to resent this channel. Just watch another channel.
@@shellgarcia what does not make any sense is pretending to understand what it is like to be a caretaker and have three hours off a week and give up everything for the relationship and then when you watch the video advertising training it comes off like an infomercial to a time share to have access to the larger community where there are actual resources and sharing both ways. That is like dangling bread in front of someone who hasn't eaten in two weeks. It is really unkind and I have a right to say so because I have done the work and I have watched this channel for a year. And I have also delt with nurse "twinkle toes" in this house when the doctor and the social worker said she qualified for actual nursing help with say UTI testing and maybe some actual nursing. What we got out here instead was nurse "twinkle toes" who shows up when she feels like it for four visits and is just here to " observe" our suffering. The Alzheimer's association hotline doesn't answer the phone or call you back. And if you want to act like you are the savior of the dementia community you have to offer it to everyone suffering not just the elite. It is my experience that if you actually have the resources to pay for the education and the resources you give up on your loved one pretty easily anyway. So why network and offer resources with just people who take care of themselves instead of the folks with the dementia?
@@songoftheblackunicorn666 Carping critics are usually unhappy with their lives and take it out on other people. Don't be that type of person. It doesn't do anyone any good to tear down other people. Own your situation and benefit from the assistance others provide without being critical. Dr. Natali isn't forcing anyone to do or buy anything. YOU are responsible for your happiness, not anyone else!
Explore our Care Collective for personalized support, live Q&As with dementia experts, and a supportive caregiver community:
careblazers.com/new-member-welcome-offer/
My wife was diagnosed with Alzheimer’s about five years ago. At first it was frustrating to see her misplacing things, not finding common household things, losing the ability to use the phone or a can opener. I am seeing a therapist who helps with my stress and I’ve accepted that my wife won’t be the same, and I’ve developed strategies for communicating and working with her. My main concern is the painful frustration she experiences when she can’t do things that were simple a few years ago. My therapist helped me find a counselor who works with dementia patients and she has really helped with my wife’s anxiety. My main focus is creating a home environment for my wife that has the least amount of stress and confusion. And to remind myself that this is someone I’ve loved for several decades and as caregiver I’ve committed to being there for her. And yes, I take care of myself too.
Thank you for your comment. It meant a lot to me. I am without help on my care giving journey and have to handle all the stress, confusion, uncertainties and whatever other emotions there are. We have 2 children in their 40's (girls) but they don't want to become involved anymore. They want to put her in a care giving facility which will be traumatic for my wife. I also commit myself to care for my wife by creating a home environment as long as it may possibly be. She doesn't want other people around and tends to be paranoid as far as other people are concerned. That means I have to take care of the household responsibilities like meals, washing, cleaning, etc. What the future holds, I can only guess. I know it will not be easy as this illness has only one way to go. I take it day by day and just do my best. Thanks again. In a strange way, it does help.
Thank you for sharing 💖 So glad you were able to find a counselor to help your wife.
@@DementiaCareblazers thank you for the videos and so much information ! My care giving journey has only just begun, since my partner was diagnosed with Alzheimers 3 months ago. His memory is quite bad and he has lost interest in many things. Our relationship has changed a lot and it was worrying me,but now I understand that it may have been the beginning of his Alzheimers. The uncertainty of this journey and the worries for our future are on my mind all the time. I just take it a day at a time; that's all we can do. After the diagnosis we were contacted by a person from Dementia Australia, who put us in touch with another person from the Dementia association, but in our area and she has been so helpful in getting more I formation. We got loaned some books about the subject and our GP has been extremely helpful with suggestions of medications and well timed check-ups. Care blazer videos are very helpful, thank you so much. Carla
@@friedrichswart3235support group?. Online if you cannot get out due to these commitments. Save your mental health ❤️
@@friedrichswart3235 we’re climbing similar mountains…I’m working with our primary caregiver to learn what resources are available when the time comes for more help. Medicare should be able to help with some of that. Things to learn and prepare for…
I struggle daily like everyone here does. I take care of my disabled, bed ridden wife so therefore have the responsibility of the house, bills, cooking, cleaning etc. And my Mum lives alone and has Dementia and I am her primary care giver as no other family member wants to step up. I do Mums shopping, pay bills, make appointments, etc, we all know the drill. I lost my Dad when I was 14. I found him dead one Sunday morning so with me being the eldest child felt responsible to look after Mum from that young age, and I always have. I have always been Mums back up, so to speak. So yeah, life gets rough when I am sometimes expected to be in two places at once.
I do what I can to the best of my ability, but in all seriousness, I'm not sure where I'd be without these videos, as I am on my own in this journey. I can't thank Careblazers enough for the help they provide not just to me but to so many.
Stay strong everyone, and remember, you, are not alone.
❤🤗⚘
Your strength is so inspiring.. God bleas you
When the memory Care house I had my husband in said they could no longer care for him, I brought him home after 6 months. How doctor said he qualified for hospice. After 6 months hospice said they would extend him for 2 months but if there was no decline they would live discharge him from Hospice. Now I am on my own. I lost his physical therapist, massage therapist, 2 nurse visits a week, his social worker, pastor and music therapist. Also lost all of the equipment and supplies they provided. I appealed their decision but they denied it. Unfortunately, Medicare has one set of criteria for all diseases. My husband is dying every day. He can not bear weight, feed himself and utters only words. But because he smiles and has great skin condition and has gained weight since being in the care house, they say he is not dying. What a pity they are abandoning him in the frailty of his last days. Luckily he is a veteran and the VA is helping me through this. I feel for those who do not have support. Dementia has a different decline than cancer, but these patients need hospice just the same. It's their right yet they are denied. Shame on Medicare.
Why couldnt memory care have him anymore? They cost like $8,000 on average per month.... What was the reason they couldnt have him anymore?
@@user-mf5nf5ok8m
I went to feed him dinner one Saturday evening as I always did. I went every breakfast, lunch and dinner as the care house was only 3 blocks away. When the aid brought him to the table, I could smell he was wet. I reached over to fell his pants and they were soaked. I said to the aid, do you know he is soaking wet? She said she didn't have anyone to help her lift him. I said, how can that be my problem. I am paying $5600 per month for you to keep him safe and comfortable and this is neither. She was very offended and turned it on me. Said that I verbally attacked her. We were supposed to have a meeting Monday morning to iron things out. But the first words out of the Administrator's mouth were, we can no longer take care of your husband.
I did not do anything wrong, merely advocated for my man. Keep in mind he had 2 UTIs in the 6 months he was there. One of which went septic. He was in intensive care for 11 days. I administered 35 days of IV antibiotics get rid of the infection but he never walked after that.
I have had him home for 10 months now and he has never had a UTI.
I felt very betrayed by the whole thing. I took fresh baked bread to the residents every morning. I did dishes after every meal so the aids had more time to spend with the residents. I helped cook and became close to all of the workers and residents.
That one time I spoke up, they kicked us out.
It turned out to be a good thing. He was so much happier when he came home. Though it is hard on me physically, I am financially, spiritually and emotionally better too.
Try getting palliative care. Their requirements are not as stringent as hospice and do provide extra support.
@@tatyanaj64 Yes, what I have now will be a home based primary care through the VA. But the nurse will only visit once every 3 months and the doctor once a year. For some reason, it is taking a long time to get him in the program so it hasn't kicked in yet. With some digging though, I found out they will give me palliative care as well. Not quite sure how to use their services yet. Since my husband is only 10% disabled for hearing, his benefits are limited. They will send a bath aid twice a week and give me 13 hours of respite. They also will provide diapers and pads. It seems to be coming together but just won't have the 7 professionals Hospice had working with him. I miss their support so much.💔
There is a European story of a messenger travelling on foot to the next village to take a message. It starts to get dark so he settles down by the roadside. He takes off his shoes and points them in the direction he's going so he'll know when he wakes. Someone in the night walking kicks the shoes and puts them back neatly but in the wrong direction. When he wakes up and sees them he walks that way thinking its the next village he's come to, but is amazed to see identical people in this "next" village. There's even a house that looks like his and he knocks on the door and is greeted by a woman who looks like his wife and some children who even know his name. It takes weeks for him to begin to believe it might be his village and family. They convince him to stay, but even though things look the same, from then on he's never quite comfortable or sure that it's his real home.
An old story but very illustrative of how someone may feel.
I told this story to my husband who loved to tell it himself, when he woke up recently and shockingly suddenly asked where he was.
I said : you're at home.
He said : l thought things looked familiar!
Yes my husband just asked me yesterday where he was? So sad
❤
All of those are so true and I don’t know if it’s a catagory but my husband and I were a team and I have had to take over every responsibility in the house now - managing our finances, paying bills, doing the taxes, balancing a budget
navigating all home repairs and maintenance, every decision big or small now is my responsibility. Plus all the things I was already doing So not only are you now responsible for caring for another person you’re also now responsible for everything they did or you did as a team
Yes, I'm so sorry. It's extremely overwhelming and exhausting. 💙🙏💙🙏💙
That is exactly what I am finding. He used to do so many things, but now it is all on me. Long story, but after 40 something years of always owning a home, and 8 years of living and traveling on a boat, now we rent a house because I know he can't take care of things like he used to. Even at that, I am in charge of everything and he is very dependent on me. Very tiring.
God bless you for giving him good care. I know from experience it is very demanding... especially when you don't feel good. Lean on the strong ones during those times. I chant many days, "I can do all things through Christ who strengthens me." His grace is sufficient. Sending love and prayers to you.
In my moms case, who has dementia, my Dad was a controlling person with no patience to teach mom anything. When he suddenly passed she was lost. She did not know how to do anything and got herself into some real trouble, and was also taken advantage of in a huge way, that cost her nearly all her savings. She refused help or would turn advice away, because she wanted to prove she could do it on her own. She also lost all their long time friends. It almost felt like after my dad passed she took on his stubborn, miserable personality. She was also angry because she had convinced herself he had no died, but ran away with another woman. She started giving away all his things including very expensive tools. Dementia took nearly everything from her.
Me too. I feel it is like going back to work as I approach 80, I have so much to do....as well as caring for my husband. He was an engineer, the practical half of our marriage.
I am on a steep learning curve about house repairs, car maintenance etc on top of all else. Margaret UK
My husband just turned 56. He was officially diagnosed 4 years ago. I am 42.I still work so need to be away 50 hours a week. The only help I get is from my 74 year old father who checks on him while I'm at work. I sleep less than 4 hours a night because he is constantly waking up, and just stands in the dark. Also, starting to pee before making it to the toilet. I'm broken 💔
You are not alone. Ever...
So sorry that you are going through this My LO has begun showing physical disabilities- and is getting diarrhea that he cannot control prior to reaching the bathroom.
I feel for you. My mom's doctors want her to go to a day center at least 2 days a week both to give me a break and to get her out and socially stimulated but she refuses go go back after 1 visit. She doesn't feel like she needs to be there. I have kidney stones and I don't know what I will do if I have to have surgery if she won't go to the day center, she can't be home alone. I don't know what I will do it is so isolating. Clearly we are not alone but we are isolated in our similar bubbles fighting the same challenges but we have little energy left to gather strength and support from each other because we have so many daily responsibilities to juggle. Hang in there, we truly feel your struggle
I used the same language ("I'm broken") to describe my exhaustion, my frustration, my not knowing what more I can do. YOU are not broken. YOU are amazing, and you need to talk more kindly to and about yourself. It's the situation that's broken--working full time, little to no support, not being able to sleep, etc. I get it, but you are not the problem; you are not at fault. You are, like all of us, doing the best you can. Consider yourself hugged.
@gabrielleking6176 made me cry. Thank you thank you thank you
My mom has been in memory care for over a year. At a support group meeting, a lady shared something helpful. She had been visiting her mom frequently, like 2x/week, but she noticed it only reminded her mom that she wasn't remembering things like she should. The lady now visits once every two weeks, which allows her mom to have her own routine with her friends and neighbors, and not have that unsettling feeling. That was reassuring to me, particularly since neither my sister nor I live in the same state as where mom is at.
I am caring for my mother who received a dementia diagnosis 6 years ago. I am struggling with the guilt I feel for planning to put her in a nursing home. I have no life, I cry every day, and live in anger, frustration and depression. I have received no help from my two siblings and I’ve had it. It’s going to be hard, but I cannot go on like this. It has affected every area of my life and is greatly affecting my own health.
You are not alone in these feelings
You have done all you can, so don't feel guilty about getting professional help for your mother. You have been a great help to her and now you must take care of yourself and rest and live your life. You have done well!
You must take care of yourself,first and foremost. I hear you.
This is my story to a T. I'm sorry for everything you're going through and I hope it improves once you're able to transfer some of the responsibilities to the staff at a facility who are better equipped.
I only today made appointments for necessary dental work, my first mammogram (I'm 43 so I'm late) and scheduling a consultation with a chiropractor for some pain issues exacerbated by stress and sleep deprivation. I gained 62 lbs in the time I've been her caregiver due to stress and sleep issues and the fact that I had to take a second job to afford her care. I've been neglecting my own health and well-being b/c I have been prioritizing my mum's care and my own physical and mental health are in shambles as a result.
My siblings ignore me when I beg for help. I was hospitalized 2 years ago for a nervous breakdown b/c of the stress and all my siblings sent their "tots and pears" for my recovery, but not a one was willing to lift a finger to share the burden of OUR mother. I've endured thoughts of su1c1d3 b/c it feels like the only escape.
I'm trying to prioritize my own life as I have been caring for my mum since I was 25 (18 years...not all dementia, but other mental health issues that impaired her ability to make responsible safe choices) If I had it to do over, I would have kept my distance when I joined the Navy and not returned to my home state allowing myself to be manipulated into being her caregiver. Her poor choices led to a very abusive and traumatic childhood, but empathy and eldest daughter sense of guilt won over and here I am.
I put my mother in assisted living at her age 93. She was becoming unsafe at home and acted terrible at my home. After the initial period, she is much happier there. She was alone at her house and now has friends, and every meal served to her. I also put my brother in law with dementia in a nursing home. He loves it, and has gained weight and thrived. They do well in a care home because there is ROUTINE. Routine is very important for dementia sufferers. If she complains about going there, just say your are making the best decision for everyone, and it is hard on everyone. Be kind to yourself. I also take care of my spouse who has dementia so I know all about depression and frustration, too. He is almost unbearable to be around, and is physically and verbally abusive. So, take heart. Guilt is no way to feel, because you have done your best, and are doing your best, so there is nothing to cause guilt. Furthermore, putting her in a nursing home may be the kindest thing you can do. You are going to get through it all, and be OK. Stress is a killer, so I hope you get support, find someone, even online chats help. Forget blaming your siblings..Mine is a jerk,too, and will never change, so don't worry about it. My mother spoiled my brother all his life, so guess what...he is still spoiled , and is only focused on himself, he has no brain cells to care for others.
Advice from an old grandma..... Just do what is right all the time.. You will overcome, and will feel better. Get some sunshine on your skin for Vitamin D, Eat well, watch funny animal videos on RUclips and laugh out loud..
That always helps me. ; )
Hallucinations! People stealing things , seeing people that aren't there....
Thank you. My wife of 39yrs is going through this. Most days she thinks she wakes up somewhere else and doesn’t know me. I try to ground her to home by pointing out the garage/workshop we built, it seems to help. The time and energy to get everything done is the hardest. I tell her I don’t know how she did everything when we worked, I believe that’s her secret. I’m so glad I found your videos.
This video was truly a God-send! ! My husband is 84 years old and has Parkinson’s and dementia. All 5 points are right on target! I was glad to know that my feelings of being overwhelmed, frustrated, and depressed are common and not just me being a weakling!
Compassion ❤
I care for my 99 year old mother in law my husband was killed in accident he was her oldest son i do this because he can't the problem i have is she gets stuck on something and won't let it go I spent a lot of time asking God for forgiveness and more patience. l appreciate your program it gives a different approach thankyoy
Living in South Africa. My husband has Parkinson's, FTD and vascular dementia. There is no help if you cannot afford it. I've been looking after him on my own and it is hell on earth😢 Friends are gone, church not interested at all. No help with my husband. 😢
Some churches here in UK run dementia friendly daytime sessions, Dementia Cafes, etc. Also 'Singing for the Brain' social sessions. Might be worth checking out other churches and other denominations near you. There are also specialist chaplains for the elderly working with one or two Christian charities.
Sadly I hv found over a lifetime of helping elderly people in four church parishes, as we moved home, "out of sight, out of mind" occurs for members of the congegation who grow old and can't get to church and its events, even those who have given 40 or so years' service, maybe in the Choir or Mother's Union, etc. Forgotten. I wonder what Jesus has to say about this. Or what St Paul would write to a church today about this, in one of his letters. "Supporting widows and orphans" comes to mind. The 'forgetting' of the old is a stain on the churches purpose and outreach.
Old people have cried when I visited them in, eg a card home, saying "Nobody has visited me from church for such a very long time". My husband and I are slipping into the "forgotten" people as his dementia takes hold, we age, and I am less able to participate in all going on at church. I expect to fall out of view 'ere long.
Margaret
@@howardbarnes3714 Glad to hear you have faith. Your heavenly father will give you strength and stand by your side even if everyone else abandons you. Please take comfort in that knowledge!
I’m in Canada, my father has FTD as well. He was diagnosed 3 yrs ago. I begged him to move in with us.
He absolutely refused. So our only option was a long term care home. I’m incredibly happy that he refused, mainly because he is now quite aggressive if he can’t do what he wants. It’s not all bad, but I’m a small person, and I could never handle him as I’m 65 myself. I hope you can find some much needed support.
In Canada, their care homes will let you book your loved one in one of their respite rooms so you can get some rest or a breather at least.
Sending love and blessings your way. 🕊️❤️🕊️❤️🕊️
@@BonnieEwert I am 64 myself with my own health issues. In South Africa it is "no pay no go" especially with dementia.
hey I love in SA too
UK here, caregiver for work and child of a parent with dementia. Our healthcare system used to be super simple as it was entirely state run (from 1945 onwards) and funded through a levy on wages called National Insurance. It was one payment, one system, one organization, free at the point of use accessible to all regardless of means. It was slowly privatized from the 80's onwards and now, part state part private, starved of funding and greatly reduced in accessibility, it is really quite nightmarish :)
I would add some additional changes to the 5 changes: 1- Asking the same questions repeatedly. 2- Mood Swings 3- Bouts of anger. 4- Sun Downers syndrome. Some positive tips I have found effective: 1- Limit how many people visit ( 1-2 at a time) as it is difficult to keep up with more than 1 conversation. 2- Hold hands - this simple method helps bring calm. 3- Play music that is very familiar and sing along. 4- Use humor when possible and stay positive as people pick up on the vibe you put out.
Yes 👍🏻 my Mom has all of those too. And my daughter died two years ago, and I still had to care for my mom all through that.
@@jillianroberts9297my mams the same too, I’m sorry to hear that, it’s very hard , without the added grieving of your daughter.. bless you ❤
So sorry about your loss.
It has been extremely difficult in a😢😢Family situation with my Dementia. And I am trying my very best to live as normal but I struggle very hard to live with Dementia as an every day Person with Dementia. I’m trying very hard to succeed as the Family Breadwinner at home. I’m trying Very strongly
The hard category is relationship changes. LO depends more on me to be at his side continually but I am not emotionally engaged anymore in always being there. Dynamic changes.
Another category that is often overlooked is financial challenges. My mother is in the early stages of dementia. I have had to take on additional financial responsibilities to ensure that she receives quality care. While she has good insurance, there are other financial obligations that have to be addressed. Taking care of bills when funds are low, home maintenance, car maintenance, food, and sometimes other activities that she needs to aide in her well-being. It takes a huge toll on me, but the reward of seeing her thrive despite her condition makes me grateful that I can shoulder the financial load.
I am in the UK going through this with my husband of 45 years. I feel a lot of grief but also joy in that I can make him feel loved and secure and I have slowed down to listen and be with him. He had a fall 2 months ago and that has really knocked him back but the state provides carers to help for a month or so, after that if you have savings of more than £23,000 you have to pay. Likewise if the person has no money or assets the state provides care including a care home but if you have assets then you pay but they can’t take your house if the other spouse is still living in it. Government also gives £400 a month allowance for the carer. We actually have many benefits, medication is free so we are extremely fortunate, also a lot of groups like Age Concern who do a lot so really we can’t complain. Your videos are a huge inspirational help, thank you 🙏
They don't give you carers allowance in the UK if you have a state pension! so the carer gets nothing!!!
1. thinking changes. 2. physical changes. 3.stressful impact on caregiver. 4. frustration with health-care system. 5. relationship changes.
Same in Canada regarding health care system. Our health care is great.... until is comes to dementia and other mental health related disease.
My wife has dementure but in addition she has coped and heart failure. This makes caring a lot more difficult. She also refuses to believe that she has Dementia.
Dr Natali is 100% correct. I was a caregiver for my Mom for about 5 years-until she died. Dr Natali’s program & videos were a lifesaver for my family. I still watch videos and new information as I always learn something for my everyday life. I don’t know how I would have survived without her and other caregivers.
Best $ I ever spent and time I’ve invested. The secret I’ve hit on with my 95yo mom is to try to make her laugh when something seem dier. Some days she will wake and have the attitude of ‘I wish I were dead’ (after I get her enough coffee) then I say you were always the last to leave a party. That’s just you! She’ll chuckle and say, yea, you’re right about that. So we try to find the lighter way of looking at this aging. Knowing we’re all doing it, day by day…
Yes early days here but I find that if I start to laugh and comment about us BOTH being a couple of old fogies the tension evaporates.
I’m interim caregiver for my sister while her husband is out of the country. She has been vicious, threatening, continuously and loudly verbally abusive without even short breaks. There is no way to distract her. The only way to get a break from the abuse is to lock myself in the bathroom for a few minutes. It is constant. I feel my physical health and sanity deteriorated. I have to do this three more weeks and there is NO help. I need help, but there is none.
@@bettymerchen
My heart goes out to you! Medicine can help calm her. Please call her doctor. ❤
Dr. Natali is a Godsend.
Extreme anger blips from my loved one
Same here ! If he is awake, he is cussing me. Which I guess is OK, because that is an improvement over hitting, pushing, and kicking while he cusses. Actually, looking back, anger was the first symptom that reared it's ugly head. Anger all the time at everything or nothing. Most people just think dementia means someone cannot remember things. I used to think that too.
I am experiencing that people doubt the extent of what is happening with my husband so I feel like my experiences are discounted. I feel like I am disappearing in all of this.
I too was told by friends that he seemed fine to them and that they did not see any of the changes I was seeing. As time has passed, friends are seeing my husband’s challenges with Dementia and so they are staying further away and I am feeling quite isolated.
Same here: my partner is mostly doing fine, so I sometimes feel like it's just me who sees these changes. We need to keep social contacts alive though. That is really important for us as carers but also for our loved ones. Find a support group!
Yes, people don't understand and most don't want to have a visit, or phone call or even email.
Help! My 67 year old husband has dementia, and today we brought my 86 yo mother here who has NOT been diagnosed, but it is clear she has dementia. She has taken a sudden turn in two weeks, then three days ago fell - 5th bad fall in a week - and broke her arm. She now requires two person assist for everything, and there are no rehab beds available. My dad can’t care for her so she came here. My husband can still be helpful, but we ALSO have our own 5 (adopted) kids here who all have significant disabilities. Drowning……I am drowning.
May God give you the strength you need to deal with the many challenges you are experiencing. Also, may He bring people into your life who can be of assistance. Peace and blessings to you, my dear.
Oh my goodness!! You are not superwoman. You can't carry that load. You must have some help. My heart is with you
@@jackyhorn6709 thank you. I don’t WANT to do it all. But, the help takes time to establish. My sister and I had my mom remitted to a different hospital, so a doctor there could write orders for a TCU. She moved there yesterday. We’re hoping to get two weeks there. When she comes home it will be with nursing and other supports. Now if I could just hire a cook. 😀
I've written you before and you have been so helpful in answering my questions. Thank you. Yes,these I have experienced all of these with my Mom, Linda. Since reading her sight has decreased to abiut 12 inches in front of her from her to the object and the span of her parifrial vision has decreased, I am more patient with her. She is gradually losing her sight. She has Lewy Body Dementia and doesn't have a full conversation because at Tim's she will tell me how many times she sees loves ones who have passed on or a bunch of children come in and are looking for someone. She also sees this white tiger with black and white wings that comes to protect her. Also,her Uncle Dan passed away about 2 months ago has visited her several times as he is working on scheduling her flight soon. 😢 Heavy times. I have lost so many people in my young life, but losing my Mom like this is the worst emotional pain I have or will ever feel. ❤😢
From Singapore:
The Singapore geriatric healthcare system is good and responsive, with many programs for persons with dementia. Most important is to diagnose the dementia patients for thyroid issues, blood sugar, blood pressure and other medical conditions early.
A 6th area where Caregivers must be effective in is knowing how to feed their charges with prescribed medications properly, feeding their meals appropriately and how to maintain their personal hygiene conditions in the home where they live. These are very crucial skills to pick up as a personal change.❤ All the best to Careblazers! Thanks for this video!❤
Changes of relationship . My husband is going through with that with his Mom. She has been living with us since April 2024, when her eviction from her apartment was official , we only have a week of knowing about it.. That’s the time they found out something is wrong with her. She doesn’t recognize my husband as her oldest of her 2 sons. He is doing everything for her but she doesn’t believe and so he starts not care to interact with her. He doesn’t want to talk to her. And if we show show her our wedding picture, she thinks it’s her ex husband and would say mean words and call him a cheater. My hubby had to reintroduce himself and show her his ID At times , she would then believe but next thing you know it , she forgets.
He is handling the health insurance, got her covered with MediCal which thank goodness covered the hospital outpatient bills.The legal stuff still needs to be done.
It’s hard. Thank you for helping us caregiver.
I think the physical change that surprised me the most is the drastic posture change in my mom. Poor little lady is so curved forward. I’m sure disc degeneration is part of it but, think it’s from dementia also. The vision difficulty also surprising.
My mom too ! She is very curved over and has vision problems hearing problems. She wears hearing aids and has glacoma from her dementia/ Alzheimers.
She also has diabetes type 2 , and high blood pressure. She drinks alot of diet coke and she has her whole life . Tab, pepsi cola etc. I try to monitor it but its hard. She lives alone still in a small townhouse very close to me 5 minutes away. I believe her Alzheimers is from drinking these chemical drinks every day for 80 yrs ! She is 89.
I care for my parents, both with dementia. What I run into quite often is that they (one or the other) turn on me. For instance if they lose something (or break something, which they do all the time) then I'm blamed for hiding it, or breaking it. This paranoia happens quite often and I fear that at some point I might need to be replaced. But I have heard about them turning on their caregivers, and apparently its not uncommon, but I would hope I can see this through to the end with them, but I'm not sure that will happen.
Boy that’s tuff. We are just dealing with a very difficult mother in law with dementia. It’s almost you have to keep making records, take pictures and make a diary. I really wanted to do that but we still have a full time job with responsibilities.We have to lock doors here and there.
Dementia Australia are a great organisation here and one phone call is all it takes and we also have Carers Gateway which is also great 👍
Thank you for this! My husband seems to declining fairly quickly with Lewy Bidy Dementia and Alzheimer’s. Disturbances at night and loss of sleep have been the worst impacts for me. I’m grateful for a great geriatric care team at UCONN Health Care. Meds and a week long employment of a nighttime caregiver helped although it is very costly. I pray everyday that God will cure him and if that’s not the plan that He will stabilize him in a strong place. ❤
Lewy Body
I'm that person being discussed here! I find this sad, but very helpful! I want to share something helpful (to me.) I have recently repeatedly began NOT turning the kitchen stove off. I knew I would probably find some sort of signage on Amazon reminding me to turn off the stove. I certainly did. There were several types of stickers, and I found the right ones for my stove. No worries. They can be removed with a product easily available.
God bless you
Thank you for sharing 💖💖💖 Sending you love
My spouse has dementia, but I have stress and forget to turn it off too, or forget I have something cooking. I began ALWAYS setting the timer on the stove whenever I turn on a burner....then if I stir something, I reset the time again. Try that. ; )
This video was very comforting in breaking things down for me - I’m just starting the journey with my mom but already it’s starting to feel overwhelming with trying to navigate services, deal with her depression and changes and the “support” of my family which has so far been occasional texts of encouragement. This channel in a small way helps me destress and feel less alone. Thank you.
Sending you so much love and strength 💖
I struggle with anger at my wife because she won’t go to any doctor and needs medication for agitation. As a psychiatric social worker it feels like a huge failure that I know what she needs but can’t help her. I have seen 2 lawyers but in Illinois it’s impossible to force help because she has no medical records for the past 4 years and thus no diagnosis. I’m now taking antidepressants.
Anger and agitation were the first symptoms of my spouse's dementia. ( By the way, she is your wife, not your patient, and cannot be, so don't feel like you failed.)
My spouse thought he was fine, but I finally convinced him I was not going to put up with abuse any longer. I said....'Ok, I love you, but you are not the same person now. We need to figure out what to do about it because I will not take it any more. "
The doctor put him on an antidepressant, then, later prescribed a "chill pill" called .respiradone. a very low dosage which helped a little.
The only approach I had was to adapt my reactions since I could not change him. I call it the "Don't care" coping skill. Don't care what they want, what they like, what they want. Just make decisions based on taking care of both of you, no matter if they like it or not. Such as, I took the car keys, hid them, and never gave them back to keep him from a terrible accident. I changed the computer passwords, and I took the checkbook and never gave it back, to keep him from giving money to scammers, etc. I did what was unpleasant, but that which had to be done. He had no vote in the matters, since he was no longer dependable. He became angrier and physically abusive, threw fits like a baby, etc. When he gets mad that I am in control, I just say, Yes I am, and I take care of both of us. When he says he is sick of me controlling him, I say, OK you can leave. Who do you think will take care of you besides me?
I say all this to encourage you. Maybe you need to get tough? My spouse did not want to go to the doctor because he feared the diagnosis, and didn't want it to be official. Maybe that is your wife's situation? Anyway, hope you figure something out. Be good to you. A little bit of the 'Don't care" what they think so much is quite healing in my case. It helps me care for myself, instead of constantly struggling to please someone who is unpleasable. No part of illness is fair.
Hi, I live in Australia and we have excellent health service which is free. We can get help at home to help with basic things such as cleaning or they can pick up patient take them out for the day which is a great help. It's still a very difficult time.
Yes, in Australia they seem to offer a lot of support. We are in Tasmania and there is a new Dementia Village where people can go for respite. We are so fortunate!
Just hearing you mirror ALL these things that are happening is extremely helpful. Im in Canada and yes, the healthcare system is difficult for me to manage as my father lives in Quebec and I live in Ontario. Most people are so helpful, but it seems complicated in the sense that there is no clear path to take for my dad. It all started when my mom passed away and my brother was abusing them financially. He left the house but my dad took him back, hoping he had changed, but no. It got worse. When it became physical, I stepped in, the police took my brother away and put a restraining order on him. I have been trying to rebuild my dads confidence. He wants to live in a huge house by himself, so I am driving myself crazy trying to set him up for success, although I know it is not the best place for him. My brother had taunted and teased him about being forgetful, ect, so its a difficult subject to navigate now. Such a scumbag. I have been away from my kids for 8 months and need to leave soon. I know its a lot for him, but I wish he would just move near me, but I know he needs to see that he cant take care of the house on his own and it breaks my heart.
Let's see....So you were strong enough to save your dad from the brother, so why set him up in "not the best place for him".? What may be driving you crazy is that you know it will not be a success? In my life, decisions made because they are more convenient, always come back and bite.
What I have done in a similar situation is just jump in and have the tough conversation. You may feel relieved. Throw out the pros and cons to your father, lovingly tell him what you think is best for him. I bet he will respond to your advice.
#4!!!!!!! Frustration barely describes the experience. I feel like no one ever talks about this! It’s like we need a college-level course in how to speak the medical language of dementia and dementia care.
Yes, to all the categories. We are not far along this journey but are at a stage where I don't feel comfortable leaving my husband for more than a few hours at a time. Recognizing that it will become more and more difficult to do things away from home, I have been working on developing hobbies that I can do at home that also have an online connection with other people. I belong to an online writers group that share very short stories every week. We leave encouraging comments for each other. I have a flower and vegetable garden to give me a pleasant activity outdoors at home. To add a little more interest to that hobby, I enter some flowers and vegetables in the local Fair once a year. I do watercolour painting and have an aim to participate in an online exhibit. I have phone conversations with my children who don't live nearby. These are my lifelines so I don't fall into depression. For me, finding activities that allow me to forget about my situation for an hour or so helps the most with my mental health.
I have experienced all five of these challenges with the exception of the HealthCare Services. I live in Ontario Canada and so far have experienced excellent help and care. I also think Finacial challenges may be experienced by some families. I have received amazing help through Careblazers reguarding how to respond to these challenges as well as emotional support. This was an excellent video.
@DementiaCareblazers Dr. Edmonds, would you please do a video on the physical and emotional strength it takes for a son to change his mother's adult diapers? Or, conversely, a daughter to do the same for her father? I think this is a topic that is rarely addressed by experts but is extremely challenging and relevant to careblazing!
I know it's not exactly the same as what you're describing, but I had to clean my mother's Foley catheter setup including her private parts twice a day and empty her catheter bag at least as often for 6 months. Much of the reason that she had a catheter in the first place was due to recurring UTI b/c she couldn't empty her bladder due to a prolapse of her bladder or uterus. It took doctors nearly a year to figure out that that was the cause of the frequent infections b/c none of them thought to look under the hospital gown to check that her anatomy was as it should be. Whatever prolapsed organ it is is literally hanging out of her V. Even though I have power of attorney, she flat out refuses any kind of surgery b/c she doesn't trust doctors and thinks that she needs to keep her uterus b/c she's not done having kids. Not to mention that she isn't going to understand the aftercare of having a surgery done and has on multiple occasions pulled the catheter out claiming that she can pee just fine on her own or she forgets what it's for and pulls it out like it's a splinter. She's thankfully in the hospital now awaiting assignment to a LTC facility, but as a non-medical-professional having to provide that kind of intimate care and get up close and personal with my mum's nether regions was 🤢🤮
I got upset with my friend that I didn't sign up to be a caregiver for,,but it has been resolved,,but I find tons of knowledge from you and your videos,,3 years in 77 year old nice gentleman,,vascular,,
Thank you so much for all the good points Natalie.
Something I would add on the line of healthcare…the staff was wonderfully supportive, BUT, no one told me what to expect after my husbands stroke at 64. How comforting it would have been to have someone point out a few things to expect. I think hospitals should have a program for caretakers in these situations. I have been meaning to contact the company that owns our hospital and suggest this.
Thank you , thank you for what you do!
CErick
My wife Eva would get very angry, swear at me witch she never did in all the 54 years we have been married. She would tear up the house , she would say that someone stole her glasses and cut her eyebrows, and started speaking in German all the time. Eva is from Austria. Would not get into the car and said the garage was a dungeon. At one point I was going insane. There were some good times when we would sing together watching music videos, and she would dance, but then she would just change into somebody else and be mean again. Jekyll & Hyde. I took videos with my phone of the good times and the bad times. Family members did not believe me sometimes. I told them why don't you come and live with us for a few days and see whats going on. I had to have surgery so we put my wife into a memory home. I went to be with her 10 hours a day for five months. It was to expensive to stay there but she qualified for hospice and we went home. Now she sleeps most of the day, does not walk anymore and she gets a five day respite every 60 days to give me a break. Everything you have talked about and more has happened these past 6 years. I take these movies of her thinking that maybe I could be of some help to some one when this is all over. This Dementia is terrible and you have to get help before you fall into a rabbit hole and never get out
My spouse's daughter said, "I talked to Dad on the phone, and I didn't think anything was wrong." which tells me they think I make up all the crazy things I have told them. They began avoiding us.
I hear you about them changing into someone else. In his mind, my spouse thinks I am his worst enemy in the world, just out to control his every move.. when actually I spend every moment trying to keep him from hurting himself and tearing things up.
On thing my dad has is anosognosia dementia. It took me a long time to figure this out & it’s rarely talked about. It basically means he is without knowledge of disease. He also has a lot of heart issues including afib, chf etc. He thinks he’s fine & nothing is wrong with him. It’s not just a denial. It’s an absolute belief nothing is wrong & he is fine. Not sure if anyone else has experienced this.
I have found these sessions quite helpful. My experiences are clouded even more due to my wife,s dementia was brought on by a stroke. This brings changes as we progress through it all. It also added medical issues to add to the care.
I’ve learned that anything with sugar tastes good but other food not so much.
Thank you Dr. Natali. I always am finding comfort through all of the advice you give. Sometimes I go on RUclips looking for your advice, and many times I just stumble across one of your 4 or 6 minute talks that share bits of your compassionate knowledge in this topic suited for caregivers.
If your loved one is a veteran, I would encourage you to take advantage of the VA caregiving program. There are social workers whose job it is support caregivers of veterans. They have really helped me a lot on this journey.
Hi Natalie I live in Australia so health care is a bit different here although we have the same problems. Thankyou for your videos they are so helpful as my husband has dementia. You have helped me tremendously in my journey it is heartbreaking sometimes but you give me strength, wisdom, and discernment. Thank you for your help i very much appreciated it 💕
Tell me about it 😞 , but I love my mom and I'm so glad that I opted to care for her . Too bad though I have no substitute so I could get at least 1/2 day off once in a while
Wow, emotions and feelings I am trying to manage, that are normal. Helps me to accept.😊
Your videos are amazing. They are really helping!
So glad to hear this! 💖
I am from Mexico and both my parents were diagnosed with a type of dementia in December 2023. I haven't found any specialist on this. The neurologist just told me the dx, some things to do, but didn't take time to explain the differences between Alzheimer and frontotemporal dementia.
Good Word! 👏👏👏
Yes here in Canada it’s the same..very complicated with the healthcare system and more than a bit hard to forge thru.
Please include your "Qualifications" - many of your tips are great but what is your personal Medical Qualifications - Thanks
Very Helpful! All true!! Btw…frustration with health care in Canada as well!
My husband 50 has Parkinson’s for 6 years and mci but also showing dementia symptoms when do you know when put him in a home. I have been feeling overwhelmed and grieving for him .
I reside in Australia. An ex-carer of both parents-in-law with dementia and immobility. I have nearly completed a Bachelor of Dementia Care and co-run a dementia cafe. I just want to ask if your excellent advice in this video can be in written format and freely available as a handout to anyone who has started the carer journey and the public who attend our cafe who can benefit so much from your advice and information.
It is very stressful for a caregiver , especially when putting their lives on hold, or chosing to stay single as very few partners accept the attention goes to the elderly
The Healthcare system here is sooo very minimal info regarding dementia. It is down to "oh this comes with being old". No diagnosis or anything else.
Lady, I cannot name one single positive thing. Caregiving is a unending nightmare. Like overnight I became my spouse's parent; he became a brat with the judgment of a two year old. He has become a narcissist, a hoarder, and a wife beater. Caregiving for someone with dementia is legal domestic violence. They can unpredictably hit , push, and kick, and for no reason. My spouse is extremely healthy, but does nothing except cuss me all day. After years, I have learned a coping method called, "Don't care." I don't care what he says, what he likes, or what he wants. I do all the work and make all the decisions to take care of both of us and keep us safe.
His daughters avoid us like the plague. One of them told me years ago, "I talked to Dad on the phone, and nothing seemed wrong at all...." Like I am making up the craziness!
So, I don't care....they live their lives going on vacations, raising kids, etc.
I am a tough old bird. I will survive.
Thank you so much. I am experiencing all 5 of these.
Another possible category: I wonder if most caregivers experience grief in one form or another. I know I certainly have. Just a thought . . .
@janejohnson632 I sure do. So depressed, but I'm good at hiding my emotions. It's not healthy, but I don't feel I have a choice. If I'm not here for my partner, nobody else will be there for him.
Please be ready for the first time your loved one doesn't know who you are. Even though I knew my mother had Alzheimer's dementia, it really hurt the first time I realized she didn't know me.
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I wish you were in my shoes. I'm not a care giver 😢
Thank you for this video...so true especially with the healthcare system!
Thanks for watching!
Behavior changes in the patient! A big change!
It is the same here in Canada as well.
My problem with the healthcare system is that after seeing three neurologist, one of whom is internationally known, they all basically end up, saying there’s nothing they can do. There has been too much emphasis on amyloid as the cause rather than associated with the disease. my personal belief is that this is an inflammation problem and not enough research is being done on that Solution
Its a shame
medicare doesn't cover for home attendant. When you have worked.
The health care system in Australia is very confusing and frustrating also.
I am taking care of a mother with post war PTSD and was incapable of mothering. I wonder if another change could be one of a closer relationship between the caregiver and the loved one who has dementia.
So accurate
ThNk you Dr Natali
♥️
Watch your siblings run away and not help
So true. My brothers have dropped right off the radar. It's so hurtful, not to even get a phone call.
@bren.k.2163 just shows you how selfish they are. Call them and they'll just give you lies of excuses lol
@@melaboul5020 You're so right. I like the "I want to remember him the way he was" line of bs. I really have to bite my tongue sometimes, when asked how my husband is doing. I feel like saying, "here's an novel idea...go visit him!"
@bren.k.2163 yes just best to tell them go visit him if they call or best not to contact them because you already know what the answer is going to be
Our primary doctor gave my wife 10 simple questions that anyone down to third-grader could answer. She answered them correctly and he declared she does not have dementia, but of course she does. So I decided I'd just take her to a neurologist in the Presbyterian "Health" System, and guess what, I'm required to have a referral from the primary. I made the huge mistake of carrying my federal worker health plan over into retirement and as the result we only have Medicare A. So I can't get any medical care for her dementia. We are so screwed.
There are days when I feel I cannot handle taking care of my husband.
My 93 yr old Mom obsesses about going blind (or falling in the shower even though she’s got help). Am I right to think that the visual is comprehension loss - such as looking at her watch and being totally off in reading it? Because her vision checks out quite well.
Explain the difference between dementia and alzhimers.
Hi there, Thanks for your question. Here is a video that explains the difference between Alzheimer's and Dementia: ruclips.net/video/HgsK0oFOa1g/видео.html
I can't seem to find anything on an issue with my mom. She talks about wishing she would just die. She feels she is such a burden. When we question if this is her true feelings and she says no she doesn't want to die...what can we say or do? This is very troubling, she currently lives with her granddaughter and granddaughter husband
Anything extra that happens to my mam, infection, pain etc she cries to die all day. Then when i have sorted the problem, she is happy, great with grandkids, friends et , smiling laughing. Emotionally, it is killing me, very difficult.
@jackyhorn6709 thank you for your reply. That does give me another way of thinking. Will pay more attention to that suggestion. You are correct, emotionally it is just another layer of the heartache
The health care consistently lets me down. So don't feel bad when you state the truth.
My dad could've had better care. My mother could've lived years longer than she did.
But, bad healthcare system in america.
Something I'm experiencing is aggressive behaviour form my husband
??? QUESTION??? WHAT SHOULD YOU DO WHEN YOUR LOVED ONE TALKS TO HIMSELF IN THE MIRROR, THEN THE RESULTS ARE NEGATIVE? HE SAYS THIS GUY IS FOLLOWING HIM AND HE'S GONNA BEAT HIM UP?
We thought my 83yr old mom has demebtia. But it turned out to be hepatic encephalopathy. .. So the doctor gave her some not-so- expensive laxative meds. And she becomes "clesr" .. we were told hat she simply has to POOP everyday to avoid hepatic enceph.. so many people are being misdiagnosed as dementia or Alzheimers - but turns out to be "hepatic enchepalopathy which is curable - just make them poop daily so that no ammonia will reach their brain.
My mom & are she may have the flu.Because she is so weak she is using the walker.( that’s a miracle in its self.Just in the last 2 weeks she has fallen numerous times. One of times went to the hospital got 3 stitches in her head. Did attribute that to dementia She went to the ER with stomach pain, and staid there 3 days. She also has become incontinent. I have picked her up off the floor with the hoyer at least 7 times. It as definitely been a DROP in her journey. (Health ) Do you think it’s the dementia and probably not the flu. She has no fever. She is extremely weak.?
You might add grief to your list.
What do you do when she wants to drive the car
Hi there, Here is a video you may find helpful:
ruclips.net/video/GmGHojIVyt0/видео.html
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I apologize for repeating myself 😮
I am a caregiver not a careblazer i don't financially qualify to be a careblazer because I gave up everything to caretake for my Grandma who it took me 42 years to find as a closed adoption adoptee and because I am secondary medical proxy i don't qualify for caretakers aid and therefore don't financially qualify for careblazer training or any training AT ALL. So I don't see any reason to help an afluent channel when I am disposable and I will most likely be be living in my car in upstate NY this winter so that everyone could get rid of Grandma in a nursing home instead of encouraging her to do her rehab.
Careblazing is a mind set, it about changing how you think about your role. It only requires you taking the time to watch Dr. Natalie’s FREE videos. This journey has been 6+ years for me and I’m telling you her videos have saved my life.
@@marycalmes2217 I'm not saying that when I first started watching miss Natalie's videos that it was not extremely helpful, however she also touts about the community access and help when you pay and you are cut off and excluded from it if caretaking has left you completely destitute and I have a lot to offer the caretaking community as well as to benifit by it so yes I resent that and have every reason to resent being left out of a community I deserve to be fully a part of just on the basis of financial status.
@@songoftheblackunicorn666I don’t pay for any of her videos. What you’re saying doesn’t make any sense to resent this channel. Just watch another channel.
@@shellgarcia what does not make any sense is pretending to understand what it is like to be a caretaker and have three hours off a week and give up everything for the relationship and then when you watch the video advertising training it comes off like an infomercial to a time share to have access to the larger community where there are actual resources and sharing both ways. That is like dangling bread in front of someone who hasn't eaten in two weeks. It is really unkind and I have a right to say so because I have done the work and I have watched this channel for a year. And I have also delt with nurse "twinkle toes" in this house when the doctor and the social worker said she qualified for actual nursing help with say UTI testing and maybe some actual nursing. What we got out here instead was nurse "twinkle toes" who shows up when she feels like it for four visits and is just here to " observe" our suffering. The Alzheimer's association hotline doesn't answer the phone or call you back. And if you want to act like you are the savior of the dementia community you have to offer it to everyone suffering not just the elite. It is my experience that if you actually have the resources to pay for the education and the resources you give up on your loved one pretty easily anyway. So why network and offer resources with just people who take care of themselves instead of the folks with the dementia?
@@songoftheblackunicorn666 Carping critics are usually unhappy with their lives and take it out on other people. Don't be that type of person. It doesn't do anyone any good to tear down other people. Own your situation and benefit from the assistance others provide without being critical. Dr. Natali isn't forcing anyone to do or buy anything. YOU are responsible for your happiness, not anyone else!
If I unsubscribe, and then resubscribe, can Meko get an extra belly rub? Also, is Meko named after the dog in Skyrim?
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Its a shame
medicare doesn't cover for home attendant. When you have worked.
Its a shame
medicare doesn't cover for home attendant. When you have worked.