To watch the first video in this series head here Dementia Care Giving | First Signs and Symptoms ruclips.net/video/tdDxQtM__ng/видео.html Thanks for watching and please share if you know someone that would find these videos helpful! Hang in there.
Hi Jen! I am enjoying your videos and wanted to share something with you. I'm a retired Occupational Therapist and worked a lot with dementia patients. I used to go to a yearly continuing education conference addressing the different forms of dementia and one year we had the most wonderful speaker. Her name is Teepa Snow and she's also an O.T. who specializes in this area. She's amazing; she can turn into a dementia patient in the blink of an eye. As someone who has worked in skilled nursing facilities with dementia patients, I know what it is like to be approached by someone who is so upset because "the bus is coming and I have to go get my kids" of "I have to go home so I can do ......." which is so very important to them. Teepa would walk through our group and become this person with dementia and ask us these questions in order to see how we would react. We usually failed in our attempts to console the "patient" but would then learn ways to better handle the situations. Teepa has videos on RUclips that are wonderful and I highly recommend watching them because she has so much to teach us about dealing with people with these awful dementias. You seem to be handling this very well and I'm quite impressed with your research and what you have learned. It really will help you to spend better time with your mom and make those times as enjoyable as possible. Your statement about meeting them in their reality is HUGE; I used to think "What do you mean you need to get your kids off the bus? Do you know how old you are? ......." SOOOO not the right way to handle this! Meet them where they are. One thing I learned is people with dementia are generally just afraid; they know something's up but don't know what to do about it. They will come up with all kinds of worrisome requests because of their underlying fear. Your job is to make them feel safe and comfortable and that goes a long way to help with their anxieties. Best of luck to you and your mom as you navigate this new normal!
Appreciating your series. Something that was said to me once during my experience as a caregiver to someone with dementia “it’s a shock to lose someone quickly, it’s a dull ache to lose them slowly.” At the end of the road you are grateful they aren’t suffering any more, but you’ve been grieving for them a LONG time. Sending love and support to your family during this time.
Actually this is something that varies from person to person. I always believed that with dementia the person wouldn’t suffer but their loved ones would. I was wrong. My husband with dementia suffers greatly. In his case he has a sense of what he can’t do and doesn’t remember. He was a fighter pilot with 3 stars on his shoulder and now he often can’t remember how to press one large button to answer his landline.
Thank you for doing this series. My Mom, age 94, has been in care since she was 76. She has a left temporal lobe brain lesion and dementia. She was in assisted living for 7 years and then in a nursing home since then. She is content and has been there so long that she doesn't remember not being there. On the other hand, my Dad, who had Alzheimer's Disease, was a bear to deal with. He lived to be almost 99 and fought being in a facility every minute he was there. It took me a long time not to take his attitude toward me personally. There were some days that were just crushing. Your channel is so important to get information out to family caregivers, I found Dad's doctors to not be of much help. Plus, every time one of them said something he didn't like, he would fire them and find a new one. His last doctor would not certify him as incompetent until he started talking about the people living in the wallpaper border and how busy they were. Thank you for taking the time to share your story and reminding us there can be joy amidst the sorrow.
Oh my I thought I was the only one that went through such a long horrible end with their parents! I just about had a nervous breakdown. I'm so glad it's over! And I pray I dont do the same thing to my kids! I really think these days we live way past what we should with poor quality of life!
Goodness me, 94 and 99! My friends and I say sometimes, "I hope I will outlive my parents". Mine are 84 and 89, my mother is mentally fine, still active profesionally, but her mobility is extremely poor. My father, physically in excellent health, has been diagnosed with dementia. He's "disappearing" in front of my eyes. I can't afford specialised care such as a care/nursing home, we don't have enough such facilities in my country anyway. There's always a queue for a place, even though the prices are exorbitant.
My heart goes out to each of you, I know what a difficult life stage this is. I can not stress enough - have legal documentation in place for health and financial decisions before your parent develops dementia. In my father's case, that was difficult because "nobody was going to be making decisions for him." Fortunately, the nursing home Social Services Director was able to do this for us, but until the doctor agreed that he could no longer check himself out of the facility, he continued to do so.
I'm 70 and already started to downsize my belongings. I think it's cruel to put all of that on your family when they are struggling with the fact you have dementia. They are trying to live their own lives and it's an extra burden . The family will have plenty to do if the time comes for me to go to assisted living or nursing home.
My husband received a vascular dementia diagnosis yesterday. It was very difficult. We are not sure what to expect. He suffered a hemorrhagic stroke 8 years ago, so a new journey begins. Thanks for being here.
As a wife whose husband has been in assisted living with dementia for 7 years, I could appreciate so much of what you said. Things like not knowing each day what “person” you will find that day. I am with him for at least 2 hours every day and sometimes he just sleeps in his chair but he will wake up and smile at me and call me sweetheart. I will say that I have taken 2-3 weeks once a year to take a trip to recharge my batteries. That has helped. As to the grieving - I have grieved my husband for over 7 years but I am still with him every day. You cannot explain that! I do feel really good that he feels he can tell me that he has no memory of so many things and asks me about them. With others he often tries to fake remembering. The main thing I would share: if you have seen and lived with one case of dementia, you have seen and lived with one case. Each case is different and progresses at a different pace and in a different way.
I’m in my 30s but became the caretaker for my granny and even though she didn’t have dementia, this totally resonates on so many levels and hugs to you and all the other responsible parties out there because it is so much on you
Hi Jen I live in the UK. I am so pleased that you have family to help you, I am an only child, so everything has fallen to me to sort out. Mum didn't have dementia, but had started to get forgetful and I thought that after she had a fall and a lengthy stay in hospital it was safer for her to live in a care home. It was a wonderful place, even though it was super expensive. It was assumed by doctors that she had limited time to live up to 6 months, but she fought on for 14 months. We are now at the stage of clearing the house this weekend as it has sold. Take care. X
Thanks for the videos. I am 79 and i want to go through items at home to help my children. I am hopeful I can prepare for the worst case if it happens. I take so much from your videos, thanks for sharing
I can’t believe I found you! Listening to this is like I am looking in a mirror watching myself talk. It’s almost as if we are on the exact same journey. My mom is 87 and was diagnosed with vascular dementia and Alzheimer’s. She has been in Assisted Living for 6 years and was placed into Memory Care 6 months ago when she was trying to leave the facility on her own. We also had to sell her home to pay for her care and are crossing our fingers that we will have enough to take her to the end of her journey. Hearing you speak is so comforting to me. Thank you so much for sharing your story and big virtual hugs to you and your family!
Jen, I’m only halfway through the video but I am in tears as you are talking about the conversation you and Mom had about her lovely white cottage. What an important and much needed topic you are bringing awareness to on your channel. I know this can’t be easy to share at times, but I can’t say enough how beautifully and gracefully I think you are handling it. Sending much love to you and your sweet Mom 💛
It’s so hard. I am looking forward to finishing the series because although yes I know it’s important and I actually feel called to do it, it’s hard to communicate well in the midst of it.
I'm living this too. My dad (who lives alone with alzheimer's) has multiple carers per day plus support from my sister and me, allowing him to remain at home for now. My MIL is sadly also in the very late stages of alzheimer's and is in a nursing home. One thing which was said to me by a dementia specialist which really struck a chord is that after you've visited or talked on the phone etc, while the person may very quickly forget the details of your visit, the conversation, most likely forget that you were even there at all, they will absolutely be left with the resulting feeling. To your point Jen about going with them and meeting them 'where they are' that's really critical, isn't it? If you tell them they're wrong, constantly correct them, keep reminding them of their reality, those feelings of sadness/anger/frustration will stay with them beyond your visit/conversation. The feeling will linger but they'll have no recollection why. How can it possibly be wrong to induce happy thoughts, by whatever means, when that's the feeling that will remain, even when the memory of your visit has faded the second you leave the room. Fantasy cottage design, talking in the present about friends and family who've long passed, singing together, looking at old photographs, it's all good. Thanks for being so open about all of this Jen, our generation is in this together.
I am going through this process right now, so you have no idea how much this is helping me. My mom has pretty significant signs of dementia but she refuses to see a doctor. She is generally safe (has a very regimented schedule, drives very little), but I don't know how long it's going to last. It's frustrating how little guidance there is out there in terms of roadmaps to deal with loved ones going through this, especially when it comes to conflicts arising from the loved one's diminishing capacity to make sound decisions. Thank you so much for this series.
I’m going through this with my mother too. She refuses to see a doctor. My dad is taking care of her now, but if something were to happen to him, we’d need to figure something out immediately, and she has no recent medical history and is in complete denial about it all. I have a lot of emotions about it, and this video series has been helpful to me. Best wishes to you and your mom.
Jen, you are amazing! This series is truly invaluable to anyone who may go through or is going through this difficult experience. I love the part about your cottage conversation. Thank you so much for continuing to share this journey.
Not one aspect of this sad, exhausting journey is easy or fun. 'Rewarding' becomes flashes of coherence, recognition when you walk into her room, singing along with a song, a 'Love you too'. ON SOME LEVEL, I absolutely knew that I'd 'previously agreed' to be there, to be the warrior and fight the dragons to protect my loved one at all costs. .. And after? Life AND LOVE slowly filled back into the crevices created by the all-consuming effort. .. I came finally to the point of patting myself on the back for doing the best I could. This is my wish and encouragement for you.
@@JoyfulLivingwithJenLefforge Please give your sister and yourself a hug from this Okie. 😊 AND. It sounds simplistic, but please check online the meds your Mom is on, interactions, etc. I know from my own experience that meds can sure interfere with mental cognizance. Thinking of you kids.
Thank you so much for doing this series of videos. My mom was diagnosed with dementia almost 5 years ago. But I have still learned so much from your videos. If I could offer one piece of advice to those who might be watching. If there is anything of your your parents that you want, make it known now and put it in writing, Also, any recipes etc that they may have made that you wish you had, if you can find the recipe, copy it, if your parents can still tell you the recipe, write it down. Even better would be if they could still write it out for you. I didn't think of any of these things and by the time I did, it was too late. Her home was cleaned out by others and we had no access (another story) and she can no longer write, read, or tell us things like that.
Just got back from a very long trip in order to declutter and clean out my Dad's condo. He is currently in LTC. It is hard to see all the memories and stuff in that condo which I remember visiting so often and staying there with my parents. It was very hard to know that he will never step foot back into that space and that whole chapter has now been closed forever. I know he is better off being cared for 24/7 by the nursing facility. We went to visit him each day after we would finish cleaning his condo for the day. We even had a friend of his come visit him at the same time. He was so happy and animated to see us all. He remembers us and of course things in the past. Some things like time and day of the week are getting very fuzzy for him. He does however understand that he won't be coming back to the condo and that he is safer at the facility. So that is a blessing at least.
Hi Jen, what you’re describing is called Therapeutic Fibbing. It’s a recommended strategy for interacting with people who suffer from dementia. Confronting them with the truth is hurtful and agitating to them, and serves no practical purpose.
I lost my grandmother to Alzheimer's disease a couple years ago, and it is truly one of the hardest thing that I think a family can experience. Hugs to you and your mom, and hope you can take a breather and rest as you deserve it!
Cannot thank you enough for this one. The whole series is awesome, simply affirming. My mom is in a similar space though she doesn’t have dementia per se, just some serious health and lifelong mental issues, plus cognitive decline. Finally in really good care that she actually likes. What a blessing, feeling very lucky. Point is, the medical stuff, the financial stuff, the house stuff, the grief stuff is all the same as you’ve described. So much to do, so much to learn, so many phone calls, people to meet & talk with. Not to mention the banks… Always so many unanswered questions. My mind is clear on one thing. We do a terrible job all around for our elders in this country. This shouldn’t be as confusing and hard as it is! Silver lining for me is my mom is currently the nicest version of herself that she’s been in over 40 years. She called me today by a pet name she hasn’t called me since I was a kid, and I’m 61. Whew. Sure as heck makes it easier to visit! Peace to everyone who has gone through this, or is going through this, or will go through this. ❤ Yes, also working on clearing out & financial planning for our kids!
Jen - I so appreciate your openness, honesty, and simple practical approach to all of this. My grandmother died with dementia some years ago. She was a retired RN. I am an RN (now an NP). I lived with her a gazillion years ago when I was in nursing school working on my associates RN (I’m your age). We had so, so many conversations about nursing and how much it had trained since the time she trained and worked. At the end, she did not even know I was an RN. She did not even know who I was, but I could tell she knew enough to know I was someone she loved by the way she lit up when I went to see her. The grief. The long goodbye. The never ending daily grieving of the loss of someone who is still very much with you. Years later, typing this, I unexpectedly have tears in my eyes. I thought I’d done all that grieving while she was still alive. But, when she finally and blissfully died (I know you will understand this is meant with love) the GRIEF. Damn. THAT wave so so unexpected. My heart is truly and deeply with you as you walk through all of this ❤
I’ve been through this twice, and similar with my Mom after a stroke. I just lost her a couple of weeks ago. You have shared so many truths and help here! Thank you!
Being in ministry my husband and I are often exposed to the messy side of estates and what happens when things aren’t in order at the end of people’s lives. Getting with an estate attorney is a wonderful gift to your children and will save many hours of frustration. Being in a same sex marriage where we were not always protected as a normal married couple, paired with the stuff that we have seen other same sex partners go through , Neill and I did all our planning when we first married (it was not legally recognized by our state for another 8 years). At a relatively young age we had wills and trust long before my parents and older siblings did (some still don’t have one). It never ends either. It is also important to review things every couple of years. We had to make a ton of changes just a couple of years ago, after our neighbors (two women not legally married) passed away within a week of each other. Seeing the family bicker over the out-of-date estate documents encouraged us to make an appointment with our attorney to redo our whole trust on the way home from the first funeral.
I listened to a podcast of a man in Phoenix who owns a few Alzheimer's homes. He's having amazing success with the Keto (leaning Carnivore) diet with his residents. Family members are amazed by how it's helped their loved ones cognition. My mom is 90 and finally needed Medicaid . In Arizona it's called ALTCS and it was brutal getting through the process. But I'm very grateful that we did get approved. (It took about 3 months.)
I’m so sorry you are going through this. I went through it with my dad when I was in my 30’s while trying to raise my then 5 year old daughter and working a very demanding job managing a staff of 30 people. Worst years of my life and I am still recovering from it. You are in my thoughts and prayers. It’s a horrible disease for the family.
Thank you for your videos and “seeing me” and others who are walking down this difficult road. Your advice is spot on from someone that has been doing all this without sibling assistance for over 7 years. I think you recommended the book “The 36 Hour Day”…it is excellent, and I gift it to others as I hear they are starting on this journey. I send love back to you as you continue your long “goodbye” with your mom. ❤️
I’m so thankful to have watched this video today. I am going thru the process of placing my mother in assisted living also. Your comments rang so true. Hearing that the grief is real from someone else was much needed and helps me understand that my feelings are valid. I am also struggling with feeling guilt that I am unable to care for her in my home. Thank you for sharing your story.
Hi Jen, I really appreciate you talking to us about this. We went through it with my Grandma. Now my daughter has left her abusive husband, and she and her 2 children are living with me. My husband died 18 months ago and I have been slowly clearing things out, but now the pace has been upped to fit them in. Your wise counsel has helped 🥰
Thank you so much for making this series. It's been very informative and eye opening. I appreciate being able to hear about the process from someone walking through it.
Such a thoughtful and helpful video. We took in my grandma who was living with dementia. For her, it exaggerated her most 'unpleasant' character traits. We discovered that we could anticipate a bad day with her by her facial expression - her whole face would change, and we knew it would be a challenging day ahead. It wasn't an easy time. This video series would have been so helpful for us back then!
Went thru this 2 years ago. Cleaning her home and selling the family home was one of the hardest things we have done. It took a year. ... I appreciate your videos ❤
Thank you again Jen- I am enjoying this series and walking through a similar journey. On the grief I wanted to share my experience with a sibling that suffered a traumatic brain injury at 24. There were 3 phases. First was a waiting phase where we were hoping for recovery at least at some level, then it was accepting the level of recovery as the new reality- I had a different sibling and grieved the loss of the old. Finally, in the present, loving and enjoying the sibling that I have now.
Thank you for this series. I'm learning so much about clearing out my own house and my own possessions.❤❤❤ it is such a blessing that you have your siblings to help you as that is not always the case😢😢
In my experience, Medicare pays for a limited-time of 'rehab' but 😢 nothing for nursing care (nursing home), certainly nothing for special dementia care. Seven years ago, the cost for a decent facility was about $7000 a month for a shared room in Central Oklahoma. This cost is the family's responsibility. Be prepared to sign literally stacks of legal documents. .. MEDICAID is a different story with, yes - a list of financial rules.
It is not the family’s responsibility unless they choose to pay for private care. If the person with dementia doesn’t have enough money, they need to get Medicaid, and will have to go to a facility that accepts Medicaid funding. These facilities will not be as good as private facilities, but it is what it is.
Such good info. I had similar experience. It’s a lot. Moving, getting rid of mammoth amounts of stuff and setting up care routine and paperwork on steroids. You are smart to “just go with story” chat along as if true and redirect as needed. Keeping them happy and calm is goal and anything that meets that goal is good. Loved my long chats with mom, content didn’t matter but the feeling of giving her love mattered, feeling her love mattered. Once she lost ability to make calls or answer calls I installed blink camera all over her room in assisted living so I could easily see her make sure she was content and have two way conversation. It also became good to give feedback to team if routine needed adjusting. I also got a device that let me control her tv…so I could put it on for her on a funny channel for bits of time. Some easy things were no longer part of her function. After going thru this experience we are committed to downsizing and exiting home much earlier than our parents. Once you have lived thru spending weeks of endless trips to dump to just get rid of stuff you realize how little stuff matters. People and experiences are what matters.
I am so thankful for your channel. My mom passed many years ago from Alzhimers. I watched your video from 9 months ago " advent calender". Your mom is adorable. I'm shocked because just months ago she was so perfect, so on top of things. May you all have a wonderful journey in this life.
Thank you for this video series. I am grieving for both my Mum and my Dad. I lost my Mum very unexpectedly less than 6 months ago. She was 24/7 carer for my Dad who has Alzheimer's. He is now in a care home nearby. I have been clearing their house and sorting finances. It's been an incredibly tough time emotionally and physically. I am trying to spend as much time as I can with Dad too. I can really empathize with what you said about building a relationship with the 'new' parent. He's my Dad, but not the one I've known most of my life. I told him about Mum dying but he doesn't grasp what happened. It's so so strange and difficult but I try to find joy in my precious moments with him. It's my way of honouring my Mum's memory and to do my best for him.
My closest dearest friend of almost fifty years is in her 6th year with an alzheimer diagnosis. The grief is relentless. I miss her so much. She and her husband come to our home most Fridays. It can be torturous but like you I want to be with her as long as I can. She's on a list to be in care but the waiting time is very long. Her husband and sons (and daughter-in-law) are all being wonderful. As to the estate etc...both her time now and the deaths of several close friends have had my partner and I ensuring that our wills and more importantly our health directives are up to date. Both of ours request MAID (medically assistance in dying) for certain scenarios including dementia. I realize that isnt possible in the US as of yet, but here in Canada it is. The long goodbye is the most deeply terrible situation that I've experienced. Love to you on this difficult journey. ❤
God bless you for doing this series❤ Wish I had had these videos several years ago. I hope thousands of people watch this series because it will be so helpful for them. Yes,the grief is real. Prayers for all the people going through this.
Thank you so much for this series of videos about your experiences with your mother's diagnosis. It really does make me feel less alone as the primary caregiver of my 100 year-old grandmother. What you said about sometimes having to tell your mom little white lies made me smile. At bedtime my gran sometimes asks if her dad is home from work and if her younger siblings are already in bed. She thinks she's a young teenager living with her family in her childhood home. We tell her that her dad came home but he went straight to bed because he was so tired from work, and that she will see him in the morning. She soon forgets what she was asking about and we talk about other things until she falls asleep. 🙂
Dear Jen, thank you for sharing your experience. I have been searching for this type of video for years. My mom passed last year. We are still processing what happened. You are describing everything we went through. Your video is very informative, and so helpful for our healing. Thank you so much
These videos are so helpful, practical & encouraging. A few years back I had to move a maiden aunt with dementia into care. It was so hard getting her into somewhere and settled whilst at the same time clearing and selling her house under time pressure to cover the costs of care. All I can say on a positive nite(if there is I’ve) is that when she finally passed I was able to concentrate on her in her final days without the feeling the impending burden of having to clear and sell a house. I could arrange the funeral and services I wanted for her without the worry of clearing a house. Sending hugs x
A lot of what you said here really resonates. My Grandma had Parkinson's related dementia for 3-4 years before she passed. One thing that really helped me was just focussing on that moment - maybe she didn't remember that I'd visited but in that moment she was pleased I was there which made it worthwhile going. We (my mum and I) also talked a lot about the "last good day" and ultimately we didn't know when the last good day was until we looked back at the very end. Although that's really sad it also helped us to appreciate each good day for what it was. We can look back now and say we did our best - sometimes that was visiting 3 times a week and sometimes it wasn't and that's ok, it was our best and that gives us peace. I send love to you, your family and anybody else navigating this very difficult journey.
My mother and grandmother both had dementia from what was assumed to be Alzheimer's. I can so appreciate what you are saying and feeling. I grieved for my mom and grandmother while they were still with me. I grieved for the loss of what our relationships had been, felt grateful that they were still with me and dreaded what tomorrow would bring. It was devastating when they lost so many of the threads that connected us...but the love was still there and I carried that in my heart. It helped me through.
No, there is no cure. I believe that we will begin to understand and apply the lifestyle choices we can make to avoid dementia. We went through all you speak of with my folks. Mom is now in memory care and we hope her money lasts. If not we will have to move her to a Medicaid eligible facility. Thank you for this series on dementia. It's prevalence is exploding and people need this information.
I’ve shared this video with a dementia caregivers group I’m part of on facebook. Hoping it will help some members of the group! Thanks as always for sharing!
Sending love and strength to you. You are extremely considerate for sharing and helping others. You will reach someone who needs to just see themselves in you.
Thank you for these videos! I feel like we could do lunch together and talk for hours about our Moms with dementia and dealing with their stuff! I’m walking a similar path (but different of course! 😊) and your videos are helpful and calming. Flying back (from TN to CA) to visit my folks again this week and this is good prep!
I think your handling this with so much courage and dignity… I’m sure your honesty and openness will help a lot of your followers and there families… Thank you for sharing, No doubt in a strange way doing the videos has help you make some sort of sense of things as you prepare what to say in each video….God Bless you all….👍🇬🇧
Thank you so much for making this video and this series. You, so compassionately and wisely, imparted so much helpful information, that is sure to be a lifesaver for anyone going through this difficult journey.
I can’t tell you what that means to me. So many times I was like why am I sharing this I’m not an expert I don’t have a medical degree but at the same time when I was looking to find videos from someone like me who was living it I struggled. So thank you.
Listening to you has been so comforting. Both of my parents have dementia. Fortunately they are in assisted living and getting awesome care but currently we are struggling because they want to go to their house on the coast. They are not able to be safe there and don’t have the insight to understand that. I have used your suggestion about sympathizing with them and it has been helpful.
The care homes over in England are only private ones for dementia/Alzheimer's and you have to pay a lot of money for this. We kept her in her warden assisted flat by the seaside with carers coming in to help her for as long as possible. Until she walked out of her flat and managed to get lost, she escaped quite a few times without the carer and once she actually was walking and broke her arm. This seemed to affect her Alzheimer's and it was a downward spiral and had to find a care home very quickly. There werent meant many ones near where she lived and certainly none our government would pay for or would assist her with her payments for the home. She was only in the care home for about 4 months and it was awful to see her disappear before our eyes - truly like a prison sentence. We also believe that my parents covered up Mum's Alzheimer's and she was always saying no I am okay but it wasn't until her older sister had Vascular Dementia/Alzheimer's that we noticed the changes. We also believe her mother had the same disease. Mum managed to celebrate her 90th birthday in the January but when my Dad died in 2011 everything changed. She was a caring Mum and Nana/Great Nana and she would say very strange things. She was quite verbal about saying we were all mean and didn't care about her and actually tried to hit my sister. I am glad that you are getting all the right treatment for your Mum. xxx
The process is so incredibly hard and although she’s in a great place right now your post is a great reminder that things can change on a dime. Thank you for your kind words.
Having gone through the process, Jen's general points are on target (every sitch is kind of different). If you are new to the process, Jen's story will bring you peace when you need it most. What a gift.
Thank you for sharing. Your videos are inspiring me to see things differently. We are just entering the non-verbal stage with my mum and she seems to choke on her drinks quite often now. As you say, doctors are not able to give a time horizon, so we wait, and each visit I don’t know to expect. There will be no more meaningful conversations for us sadly. You are wise to savour the ones you’re having.
Jen, i put on your previous one about myself and friends clearing out a house, we did not get much money for items but we did get a lot of things to good homes as it were.We only had about a month, but we're getting there.
I really admire how you are handling this difficult situation. You are so poised and level-headed. Your perspective on life is so appreciated and makes me want to live more thoughtfully and with more mindful intent - regardless of the challenge/situation.
Thank you for putting this (and you!) out there. I’m a clinical psychologist who works with folks with mild cognitive impairment and their caregivers and I can tell you how sharing your experience, with compassion for yourself and others, will be so helpful. I also hope that this offers you much with your journey as well! My best to you Jen.
It's so sweet that you're sharing this. I'm the most annoying child so one day I soaked my dad's hand when he could not calm himself (put his hand onto warm water with salts) after a few minutes he scolded me by name (I caught my mom crying)
If you haven’t yet, talk to estate planning attorney in your state. There may be ways to preserve funds and not spend every last dime on care. There might not, depending on the state, but it is worth speaking to an elder law attorney on the matter
Thank you so much for sharing your personal experiences. I know that this information will be very helpful for me and my siblings when the time comes for us to go through a similar journey. God bless you.
Prayers 🙏🏻 for your mom and her family 🙏🏻🥰 It's never easy to feel you are losing your parents, just live in that moment and enjoy what time y'all have with them🙏🏻🥰 Thanks for sharing this very sensitive subject 😊 God bless
My mom still thinks she can go back to her house. She gets riled up real easily most times when we try to redirect. So, many times she just gets angry and dismissive. We then leave after a while because we can’t get her to go in another direction. I don’t feel badly about it because in 15 minutes, she doesn’t remember that we were even there. I feel if she moves to Heaven before me, I’ll grieve the relationship we never really had.
We live 2-1/2 hours away, so it takes planning to get there with our schedules down here; unfortunately, she never got into technology (she was NOT going to pay for a device or internet), so FaceTime is not an option.
Jen, every time I watch more of your story, I just want to start by sending you love. I am looking forward to seeing how you make changes in your own life. Thanks again for sharing this.
Watch out for medicaid as well. If my Mom's funds ran out before she died, we had her in a facility that accepted medicaid which we would have had to qualify her on to keep her there. However, she passed before that time. But we got my mother-in-Law on medicaid (picks up bills medicare won't cover) because she had very little income and savings- but she did have a house that didn't count against qualifications. HOWEVER, as soon as she died we found out that the government requires states to put liens on the estate of people who qualified for medicaid to get back monies spent on them. So yes you can keep your house, but when you die it is not inherited by your descendents but has to be sold to pay back the money medicaid spent which in fact is only a loan!!!!! Your state may vary and I don't know if any expenses are exempt. But consider this if you need to qualify for medicaid. I know it is there to prevent people who are not destitute from using it and hiding money, but this was a shock.
When my grandma passed after years of dementia I didn't experience grief, I had already gone through the whole process and it was strange to not feel acute pain at her passing. Thanks for sharing your thoughts.
Honestly? I’m hoping she doesn’t go that long and I’m sure it was a blessing for all of you when she passed. I never thought I’d say that but this is not a kind disease.
Hahhh shes already planning her next life bless. If you read this then know she wont be around long. Spend as much time with her as you can. About 2 months id say. Lots of love and strength to you.
Hi Jen. Thank you for such a heartfelt video. This is so hard and you have handled it with grace. My prayers are with you and your family. Also just a note- I think the title says part 4 but you mentioned you are posting a part 4 next. This title may be incorrect. (In case people are interested in your series). Thank you. Be well. ❤
That was so helpful and timely for me. Thank you! My issue is that I was able to get a handle on all her "things" (bills, banks, insurances, etc...) because I have a POA. Now, I've come to realize that she thinks I am stealing from her, and she is going behind me and issuing a revocation of the POA which is locking me out of everything that took me so long to set up. She now is attempting to get a new POA and Will executed that puts her boyfriend (who is financially exploiting her) in charge of everything! What can I do?? She refuses to go to a Neurologist to get any diagnoses.
My grandmother moved into assisted living in 2019 and I’m curious to hear from others. One of the things that was surprisingly challenging for her is they would not acknowledge when someone had passed away. I generally understand the reasoning but the psychological impact of that I think is noteworthy. She has the same group she would sit and eat with or play dominoes etc and then one just wouldn’t be there anymore and no one would talk about it. I imagine going through the phase of life where all of your family and friends since childhood pass away is difficult, and going into assisted living you aren’t going to funerals every week like you used to, but not acknowledging it at all eventually wore her down and she felt like no one would care when she died. I was surprised by that part of the experience for her. Is this the norm or do you think others host maybe a weekly service for those they lost that week. With an environment with at least 85+ and significant decline, it’s reality to experience loss. The lady she got her apartment of was 107 when she passed and had been there for over 10 years.
She has a plan from USAA and no, no supplemental medical plans that I’m aware of cover anything for her care. Some long term care policies cover it but from what I’m hearing those can be tricky to use and still don’t pay 100%.
I am caring for my mom in her home. Her current diagnosis is mild to moderate dementia. I only have one brother. He’s very unscrupulous. We have put everything into place to protect her and his sons (my nephews) from my brother. One of the most valuable pieces of paper you can fill out is the transfer of deed upon death. Not only will my brother have no claim on her house when she dies, it also keeps Medicaid for coming for her house if she needs long term care in the future and runs out of money. Get a good estate attorney. Look into it. Ask questions. Ask everything you can do to protect your loved one and your family.
I’m so sorry you and your family are faced with this. Alzheimer’s/dementia needs far more awareness and research than it gets. I spent a decade working in long term care, the last several years in a memory care unit (all patients with advanced dementia but not medically complex). My grandmother also passed with vascular dementia. So I see you, and all the others who may read this who are caring and loving and grieving someone with dementia. Personally I’m not a fan of the term “long goodbye.” I feel that ignores the fact that you basically lose the person twice. It isn’t like you do all your grieving in one long protracted go and then you’re done when they pass. Rather my experience has been that we grieve the loss of who they used to be and the relationship we had over a long period, and then when they pass we grieve the loss of the current person and what our relationship had become. Sometimes that second grieving process is shorter, sometimes it’s longer. Sometimes it’s easier, sometimes it’s harder. Anyway is okay. It sounds like you have arrived to a very healthy place a lot of people struggle to get, where you recognize that what you have is today, you have this conversation. Loving someone with dementia is very much about practicing mindfulness. The past does not exist for them in any sort of concrete way. The future is highly uncertain. So focus on now. Remember that even if they aren’t sure who you are or all you have is the simple joy of eating ice cream or drinking coffee together, they will be happier in those moments for pleasant company than without you there. Also on top of encouraging people to start going through their things sooner rather than later and meeting with a good estate lawyer to get paperwork in order I also highly recommend people look into long term care insurance. Dementia care can easily run $5K-$10K a month, and that does not include clothes, anything beyond the most rudimentary personal care products, or any discretionary allowance. So unless someone either already has nothing or has vast wealth, trying to pay those bills is going to be a huge problem especially if the person is physically in good health and may need care for a decade. Long term care insurance will often cover a very large chunk if not all of that. Do read the fine print and do look for a policy that will cover home health and assisted living as options as those are more common needs than skilled nursing and some policies will only cover skilled nursing.
To watch the first video in this series head here Dementia Care Giving | First Signs and Symptoms
ruclips.net/video/tdDxQtM__ng/видео.html Thanks for watching and please share if you know someone that would find these videos helpful! Hang in there.
Hi Jen! I am enjoying your videos and wanted to share something with you. I'm a retired Occupational Therapist and worked a lot with dementia patients. I used to go to a yearly continuing education conference addressing the different forms of dementia and one year we had the most wonderful speaker. Her name is Teepa Snow and she's also an O.T. who specializes in this area. She's amazing; she can turn into a dementia patient in the blink of an eye. As someone who has worked in skilled nursing facilities with dementia patients, I know what it is like to be approached by someone who is so upset because "the bus is coming and I have to go get my kids" of "I have to go home so I can do ......." which is so very important to them. Teepa would walk through our group and become this person with dementia and ask us these questions in order to see how we would react. We usually failed in our attempts to console the "patient" but would then learn ways to better handle the situations. Teepa has videos on RUclips that are wonderful and I highly recommend watching them because she has so much to teach us about dealing with people with these awful dementias. You seem to be handling this very well and I'm quite impressed with your research and what you have learned. It really will help you to spend better time with your mom and make those times as enjoyable as possible. Your statement about meeting them in their reality is HUGE; I used to think "What do you mean you need to get your kids off the bus? Do you know how old you are? ......." SOOOO not the right way to handle this! Meet them where they are. One thing I learned is people with dementia are generally just afraid; they know something's up but don't know what to do about it. They will come up with all kinds of worrisome requests because of their underlying fear. Your job is to make them feel safe and comfortable and that goes a long way to help with their anxieties. Best of luck to you and your mom as you navigate this new normal!
Your words are so soft and kind. Thank you
Appreciating your series.
Something that was said to me once during my experience as a caregiver to someone with dementia “it’s a shock to lose someone quickly, it’s a dull ache to lose them slowly.” At the end of the road you are grateful they aren’t suffering any more, but you’ve been grieving for them a LONG time.
Sending love and support to your family during this time.
Thank you, Natalie. We are all slowly adapting to this new normal.
Actually this is something that varies from person to person. I always believed that with dementia the person wouldn’t suffer but their loved ones would. I was wrong. My husband with dementia suffers greatly. In his case he has a sense of what he can’t do and doesn’t remember. He was a fighter pilot with 3 stars on his shoulder and now he often can’t remember how to press one large button to answer his landline.
@@axisgirlvaughn7446 I meant at the end of their life you are grateful they are no longer suffering from the dementia.
Thank you for doing this series. My Mom, age 94, has been in care since she was 76. She has a left temporal lobe brain lesion and dementia. She was in assisted living for 7 years and then in a nursing home since then. She is content and has been there so long that she doesn't remember not being there. On the other hand, my Dad, who had Alzheimer's Disease, was a bear to deal with. He lived to be almost 99 and fought being in a facility every minute he was there. It took me a long time not to take his attitude toward me personally. There were some days that were just crushing. Your channel is so important to get information out to family caregivers, I found Dad's doctors to not be of much help. Plus, every time one of them said something he didn't like, he would fire them and find a new one. His last doctor would not certify him as incompetent until he started talking about the people living in the wallpaper border and how busy they were. Thank you for taking the time to share your story and reminding us there can be joy amidst the sorrow.
Thank you for sharing. I wish you had an easier time, I fear we are heading down the same difficult path with my father.
Oh my I thought I was the only one that went through such a long horrible end with their parents! I just about had a nervous breakdown. I'm so glad it's over! And I pray I dont do the same thing to my kids! I really think these days we live way past what we should with poor quality of life!
Goodness me, 94 and 99! My friends and I say sometimes, "I hope I will outlive my parents". Mine are 84 and 89, my mother is mentally fine, still active profesionally, but her mobility is extremely poor. My father, physically in excellent health, has been diagnosed with dementia. He's "disappearing" in front of my eyes. I can't afford specialised care such as a care/nursing home, we don't have enough such facilities in my country anyway. There's always a queue for a place, even though the prices are exorbitant.
My heart goes out to each of you, I know what a difficult life stage this is. I can not stress enough - have legal documentation in place for health and financial decisions before your parent develops dementia. In my father's case, that was difficult because "nobody was going to be making decisions for him." Fortunately, the nursing home Social Services Director was able to do this for us, but until the doctor agreed that he could no longer check himself out of the facility, he continued to do so.
I'm 70 and already started to downsize my belongings. I think it's cruel to put all of that on your family when they are struggling with the fact you have dementia. They are trying to live their own lives and it's an extra burden . The family will have plenty to do if the time comes for me to go to assisted living or nursing home.
My husband received a vascular dementia diagnosis yesterday. It was very difficult. We are not sure what to expect. He suffered a hemorrhagic stroke 8 years ago, so a new journey begins. Thanks for being here.
It’s so hard and scary. As you move through the process I hope you can get all the support you need!
As a wife whose husband has been in assisted living with dementia for 7 years, I could appreciate so much of what you said. Things like not knowing each day what “person” you will find that day. I am with him for at least 2 hours every day and sometimes he just sleeps in his chair but he will wake up and smile at me and call me sweetheart. I will say that I have taken 2-3 weeks once a year to take a trip to recharge my batteries. That has helped. As to the grieving - I have grieved my husband for over 7 years but I am still with him every day. You cannot explain that! I do feel really good that he feels he can tell me that he has no memory of so many things and asks me about them. With others he often tries to fake remembering.
The main thing I would share: if you have seen and lived with one case of dementia, you have seen and lived with one case. Each case is different and progresses at a different pace and in a different way.
I’m in my 30s but became the caretaker for my granny and even though she didn’t have dementia, this totally resonates on so many levels and hugs to you and all the other responsible parties out there because it is so much on you
It’s truly unreal and I can’t imagine managing all of it at 30! Oh my word that’s just too much.❤️
Hi Jen I live in the UK. I am so pleased that you have family to help you, I am an only child, so everything has fallen to me to sort out. Mum didn't have dementia, but had started to get forgetful and I thought that after she had a fall and a lengthy stay in hospital it was safer for her to live in a care home. It was a wonderful place, even though it was super expensive. It was assumed by doctors that she had limited time to live up to 6 months, but she fought on for 14 months. We are now at the stage of clearing the house this weekend as it has sold. Take care. X
Thanks for the videos. I am 79 and i want to go through items at home to help my children. I am hopeful I can prepare for the worst case if it happens. I take so much from your videos, thanks for sharing
I can’t believe I found you! Listening to this is like I am looking in a mirror watching myself talk. It’s almost as if we are on the exact same journey. My mom is 87 and was diagnosed with vascular dementia and Alzheimer’s. She has been in Assisted Living for 6 years and was placed into Memory Care 6 months ago when she was trying to leave the facility on her own. We also had to sell her home to pay for her care and are crossing our fingers that we will have enough to take her to the end of her journey. Hearing you speak is so comforting to me. Thank you so much for sharing your story and big virtual hugs to you and your family!
Jen, I’m only halfway through the video but I am in tears as you are talking about the conversation you and Mom had about her lovely white cottage. What an important and much needed topic you are bringing awareness to on your channel. I know this can’t be easy to share at times, but I can’t say enough how beautifully and gracefully I think you are handling it. Sending much love to you and your sweet Mom 💛
It’s so hard. I am looking forward to finishing the series because although yes I know it’s important and I actually feel called to do it, it’s hard to communicate well in the midst of it.
I'm living this too. My dad (who lives alone with alzheimer's) has multiple carers per day plus support from my sister and me, allowing him to remain at home for now. My MIL is sadly also in the very late stages of alzheimer's and is in a nursing home. One thing which was said to me by a dementia specialist which really struck a chord is that after you've visited or talked on the phone etc, while the person may very quickly forget the details of your visit, the conversation, most likely forget that you were even there at all, they will absolutely be left with the resulting feeling. To your point Jen about going with them and meeting them 'where they are' that's really critical, isn't it? If you tell them they're wrong, constantly correct them, keep reminding them of their reality, those feelings of sadness/anger/frustration will stay with them beyond your visit/conversation. The feeling will linger but they'll have no recollection why. How can it possibly be wrong to induce happy thoughts, by whatever means, when that's the feeling that will remain, even when the memory of your visit has faded the second you leave the room. Fantasy cottage design, talking in the present about friends and family who've long passed, singing together, looking at old photographs, it's all good. Thanks for being so open about all of this Jen, our generation is in this together.
I am going through this process right now, so you have no idea how much this is helping me. My mom has pretty significant signs of dementia but she refuses to see a doctor. She is generally safe (has a very regimented schedule, drives very little), but I don't know how long it's going to last. It's frustrating how little guidance there is out there in terms of roadmaps to deal with loved ones going through this, especially when it comes to conflicts arising from the loved one's diminishing capacity to make sound decisions. Thank you so much for this series.
I’m going through this with my mother too. She refuses to see a doctor. My dad is taking care of her now, but if something were to happen to him, we’d need to figure something out immediately, and she has no recent medical history and is in complete denial about it all. I have a lot of emotions about it, and this video series has been helpful to me. Best wishes to you and your mom.
Jen, you are amazing! This series is truly invaluable to anyone who may go through or is going through this difficult experience. I love the part about your cottage conversation. Thank you so much for continuing to share this journey.
Jill it’s truly an honor but also it’s weirdly exhausting to film. I’m so hopeful they are valuable to others! Thank you.
Not one aspect of this sad, exhausting journey is easy or fun. 'Rewarding' becomes flashes of coherence, recognition when you walk into her room, singing along with a song, a 'Love you too'. ON SOME LEVEL, I absolutely knew that I'd 'previously agreed' to be there, to be the warrior and fight the dragons to protect my loved one at all costs. .. And after? Life AND LOVE slowly filled back into the crevices created by the all-consuming effort. .. I came finally to the point of patting myself on the back for doing the best I could. This is my wish and encouragement for you.
It’s interesting that you wrote “and fight the dragons”. My sister and I say that a lot. Thank you.🥰
@@JoyfulLivingwithJenLefforge Please give your sister and yourself a hug from this Okie. 😊 AND. It sounds simplistic, but please check online the meds your Mom is on, interactions, etc. I know from my own experience that meds can sure interfere with mental cognizance. Thinking of you kids.
I needed to hear this so badly.
Thank you so much for doing this series of videos. My mom was diagnosed with dementia almost 5 years ago. But I have still learned so much from your videos. If I could offer one piece of advice to those who might be watching. If there is anything of your your parents that you want, make it known now and put it in writing, Also, any recipes etc that they may have made that you wish you had, if you can find the recipe, copy it, if your parents can still tell you the recipe, write it down. Even better would be if they could still write it out for you. I didn't think of any of these things and by the time I did, it was too late. Her home was cleaned out by others and we had no access (another story) and she can no longer write, read, or tell us things like that.
Just got back from a very long trip in order to declutter and clean out my Dad's condo. He is currently in LTC. It is hard to see all the memories and stuff in that condo which I remember visiting so often and staying there with my parents. It was very hard to know that he will never step foot back into that space and that whole chapter has now been closed forever. I know he is better off being cared for 24/7 by the nursing facility. We went to visit him each day after we would finish cleaning his condo for the day. We even had a friend of his come visit him at the same time. He was so happy and animated to see us all. He remembers us and of course things in the past. Some things like time and day of the week are getting very fuzzy for him. He does however understand that he won't be coming back to the condo and that he is safer at the facility. So that is a blessing at least.
Hi Jen, what you’re describing is called Therapeutic Fibbing. It’s a recommended strategy for interacting with people who suffer from dementia. Confronting them with the truth is hurtful and agitating to them, and serves no practical purpose.
I lost my grandmother to Alzheimer's disease a couple years ago, and it is truly one of the hardest thing that I think a family can experience. Hugs to you and your mom, and hope you can take a breather and rest as you deserve it!
Cannot thank you enough for this one. The whole series is awesome, simply affirming.
My mom is in a similar space though she doesn’t have dementia per se, just some serious health and lifelong mental issues, plus cognitive decline. Finally in really good care that she actually likes. What a blessing, feeling very lucky.
Point is, the medical stuff, the financial stuff, the house stuff, the grief stuff is all the same as you’ve described. So much to do, so much to learn, so many phone calls, people to meet & talk with. Not to mention the banks… Always so many unanswered questions.
My mind is clear on one thing. We do a terrible job all around for our elders in this country. This shouldn’t be as confusing and hard as it is!
Silver lining for me is my mom is currently the nicest version of herself that she’s been in over 40 years. She called me today by a pet name she hasn’t called me since I was a kid, and I’m 61. Whew. Sure as heck makes it easier to visit!
Peace to everyone who has gone through this, or is going through this, or will go through this. ❤
Yes, also working on clearing out & financial planning for our kids!
Jen - I so appreciate your openness, honesty, and simple practical approach to all of this. My grandmother died with dementia some years ago. She was a retired RN. I am an RN (now an NP). I lived with her a gazillion years ago when I was in nursing school working on my associates RN (I’m your age). We had so, so many conversations about nursing and how much it had trained since the time she trained and worked. At the end, she did not even know I was an RN. She did not even know who I was, but I could tell she knew enough to know I was someone she loved by the way she lit up when I went to see her. The grief. The long goodbye. The never ending daily grieving of the loss of someone who is still very much with you. Years later, typing this, I unexpectedly have tears in my eyes. I thought I’d done all that grieving while she was still alive. But, when she finally and blissfully died (I know you will understand this is meant with love) the GRIEF. Damn. THAT wave so so unexpected. My heart is truly and deeply with you as you walk through all of this ❤
Thank you. It’s been so wonderful to feel all the support in the comments. Truly only those who have been through it understand.
I’ve been through this twice, and similar with my Mom after a stroke. I just lost her a couple of weeks ago. You have shared so many truths and help here! Thank you!
Being in ministry my husband and I are often exposed to the messy side of estates and what happens when things aren’t in order at the end of people’s lives. Getting with an estate attorney is a wonderful gift to your children and will save many hours of frustration. Being in a same sex marriage where we were not always protected as a normal married couple, paired with the stuff that we have seen other same sex partners go through , Neill and I did all our planning when we first married (it was not legally recognized by our state for another 8 years). At a relatively young age we had wills and trust long before my parents and older siblings did (some still don’t have one). It never ends either. It is also important to review things every couple of years. We had to make a ton of changes just a couple of years ago, after our neighbors (two women not legally married) passed away within a week of each other. Seeing the family bicker over the out-of-date estate documents encouraged us to make an appointment with our attorney to redo our whole trust on the way home from the first funeral.
I listened to a podcast of a man in Phoenix who owns a few Alzheimer's homes.
He's having amazing success with the Keto (leaning Carnivore) diet with his residents. Family members are amazed by how it's helped their loved ones cognition.
My mom is 90 and finally needed Medicaid . In Arizona it's called ALTCS and it was brutal getting through the process. But I'm very grateful that we did get approved. (It took about 3 months.)
I’m so sorry you are going through this. I went through it with my dad when I was in my 30’s while trying to raise my then 5 year old daughter and working a very demanding job managing a staff of 30 people. Worst years of my life and I am still recovering from it. You are in my thoughts and prayers. It’s a horrible disease for the family.
Thank you. I am grateful that my kids are grown - trying to do this while parenting feels unimaginable.
Thank You for your mention of 'The 36 Hour Day" - we have given away so many copies of this SUPER book!
Thank you for mentioning the side effects of medications prescribed to manage dementia. 🙏
Thank you for your videos and “seeing me” and others who are walking down this difficult road. Your advice is spot on from someone that has been doing all this without sibling assistance for over 7 years. I think you recommended the book “The 36 Hour Day”…it is excellent, and I gift it to others as I hear they are starting on this journey. I send love back to you as you continue your long “goodbye” with your mom. ❤️
The amount of things I still don’t know about dementia is a a pretty long list but yes that book has been such a lifeline!!
I'm giving you a big virtual hug right now. Our family went through this with my Grandfather. So many things to sort through. It's no joke.
Hugs Jenn. I myself had to take care of my mom. It's incredible how Medicare doesn't help here. Best wishes to you and your family 🙏.
I’m so thankful to have watched this video today. I am going thru the process of placing my mother in assisted living also. Your comments rang so true. Hearing that the grief is real from someone else was much needed and helps me understand that my feelings are valid. I am also struggling with feeling guilt that I am unable to care for her in my home. Thank you for sharing your story.
Hi Jen, I really appreciate you talking to us about this. We went through it with my Grandma. Now my daughter has left her abusive husband, and she and her 2 children are living with me. My husband died 18 months ago and I have been slowly clearing things out, but now the pace has been upped to fit them in. Your wise counsel has helped 🥰
Thank you so much for making this series. It's been very informative and eye opening. I appreciate being able to hear about the process from someone walking through it.
Such a thoughtful and helpful video. We took in my grandma who was living with dementia. For her, it exaggerated her most 'unpleasant' character traits. We discovered that we could anticipate a bad day with her by her facial expression - her whole face would change, and we knew it would be a challenging day ahead. It wasn't an easy time. This video series would have been so helpful for us back then!
You did an awesome job detailing the tough journey of caring for a parent with dementia. Thank you , prayers for you and your mom.
Went thru this 2 years ago. Cleaning her home and selling the family home was one of the hardest things we have done. It took a year. ... I appreciate your videos ❤
Thank you again Jen- I am enjoying this series and walking through a similar journey. On the grief I wanted to share my experience with a sibling that suffered a traumatic brain injury at 24. There were 3 phases. First was a waiting phase where we were hoping for recovery at least at some level, then it was accepting the level of recovery as the new reality- I had a different sibling and grieved the loss of the old. Finally, in the present, loving and enjoying the sibling that I have now.
Thank you for this series. I'm learning so much about clearing out my own house and my own possessions.❤❤❤ it is such a blessing that you have your siblings to help you as that is not always the case😢😢
I'm praying for u and your family. I ❤ your videos
In my experience, Medicare pays for a limited-time of 'rehab' but 😢 nothing for nursing care (nursing home), certainly nothing for special dementia care. Seven years ago, the cost for a decent facility was about $7000 a month for a shared room in Central Oklahoma. This cost is the family's responsibility. Be prepared to sign literally stacks of legal documents. .. MEDICAID is a different story with, yes - a list of financial rules.
It is not the family’s responsibility unless they choose to pay for private care. If the person with dementia doesn’t have enough money, they need to get Medicaid, and will have to go to a facility that accepts Medicaid funding. These facilities will not be as good as private facilities, but it is what it is.
Im glad you are figuring things out. I feel like it is perfect timing because my parents are getting older.
Such good info. I had similar experience. It’s a lot. Moving, getting rid of mammoth amounts of stuff and setting up care routine and paperwork on steroids. You are smart to “just go with story” chat along as if true and redirect as needed. Keeping them happy and calm is goal and anything that meets that goal is good. Loved my long chats with mom, content didn’t matter but the feeling of giving her love mattered, feeling her love mattered. Once she lost ability to make calls or answer calls I installed blink camera all over her room in assisted living so I could easily see her make sure she was content and have two way conversation. It also became good to give feedback to team if routine needed adjusting. I also got a device that let me control her tv…so I could put it on for her on a funny channel for bits of time. Some easy things were no longer part of her function. After going thru this experience we are committed to downsizing and exiting home much earlier than our parents. Once you have lived thru spending weeks of endless trips to dump to just get rid of stuff you realize how little stuff matters. People and experiences are what matters.
I am so thankful for your channel. My mom passed many years ago from Alzhimers. I watched your video from 9 months ago " advent calender". Your mom is adorable. I'm shocked because just months ago she was so perfect, so on top of things. May you all have a wonderful journey in this life.
Yeah she has gone downhill very quickly. It’s been a very difficult time. Thank you for your kind words!
Hey Katy!! So loved that shoutout sister. Love you SO MUCH!! What a journey this has been…….❤
Seriously. We BOTH deserve a nice long stressfree break.
Thank you for this video series. I am grieving for both my Mum and my Dad. I lost my Mum very unexpectedly less than 6 months ago. She was 24/7 carer for my Dad who has Alzheimer's. He is now in a care home nearby. I have been clearing their house and sorting finances. It's been an incredibly tough time emotionally and physically. I am trying to spend as much time as I can with Dad too. I can really empathize with what you said about building a relationship with the 'new' parent. He's my Dad, but not the one I've known most of my life. I told him about Mum dying but he doesn't grasp what happened. It's so so strange and difficult but I try to find joy in my precious moments with him. It's my way of honouring my Mum's memory and to do my best for him.
My closest dearest friend of almost fifty years is in her 6th year with an alzheimer diagnosis. The grief is relentless. I miss her so much. She and her husband come to our home most Fridays. It can be torturous but like you I want to be with her as long as I can. She's on a list to be in care but the waiting time is very long. Her husband and sons (and daughter-in-law) are all being wonderful. As to the estate etc...both her time now and the deaths of several close friends have had my partner and I ensuring that our wills and more importantly our health directives are up to date. Both of ours request MAID (medically assistance in dying) for certain scenarios including dementia. I realize that isnt possible in the US as of yet, but here in Canada it is. The long goodbye is the most deeply terrible situation that I've experienced. Love to you on this difficult journey. ❤
God bless you for doing this series❤ Wish I had had these videos several years ago. I hope thousands of people watch this series because it will be so helpful for them. Yes,the grief is real. Prayers for all the people going through this.
Thank you so much for this series of videos about your experiences with your mother's diagnosis. It really does make me feel less alone as the primary caregiver of my 100 year-old grandmother.
What you said about sometimes having to tell your mom little white lies made me smile. At bedtime my gran sometimes asks if her dad is home from work and if her younger siblings are already in bed. She thinks she's a young teenager living with her family in her childhood home. We tell her that her dad came home but he went straight to bed because he was so tired from work, and that she will see him in the morning. She soon forgets what she was asking about and we talk about other things until she falls asleep. 🙂
Dear Jen, thank you for sharing your experience. I have been searching for this type of video for years. My mom passed last year. We are still processing what happened. You are describing everything we went through. Your video is very informative,
and so helpful for our healing. Thank you so much
Good, thoughtful video.
These videos are so helpful, practical & encouraging. A few years back I had to move a maiden aunt with dementia into care. It was so hard getting her into somewhere and settled whilst at the same time clearing and selling her house under time pressure to cover the costs of care. All I can say on a positive nite(if there is I’ve) is that when she finally passed I was able to concentrate on her in her final days without the feeling the impending burden of having to clear and sell a house. I could arrange the funeral and services I wanted for her without the worry of clearing a house. Sending hugs x
A lot of what you said here really resonates. My Grandma had Parkinson's related dementia for 3-4 years before she passed.
One thing that really helped me was just focussing on that moment - maybe she didn't remember that I'd visited but in that moment she was pleased I was there which made it worthwhile going.
We (my mum and I) also talked a lot about the "last good day" and ultimately we didn't know when the last good day was until we looked back at the very end. Although that's really sad it also helped us to appreciate each good day for what it was.
We can look back now and say we did our best - sometimes that was visiting 3 times a week and sometimes it wasn't and that's ok, it was our best and that gives us peace.
I send love to you, your family and anybody else navigating this very difficult journey.
My mother and grandmother both had dementia from what was assumed to be Alzheimer's. I can so appreciate what you are saying and feeling. I grieved for my mom and grandmother while they were still with me. I grieved for the loss of what our relationships had been, felt grateful that they were still with me and dreaded what tomorrow would bring. It was devastating when they lost so many of the threads that connected us...but the love was still there and I carried that in my heart. It helped me through.
You are a beautiful being ❤
No, there is no cure. I believe that we will begin to understand and apply the lifestyle choices we can make to avoid dementia. We went through all you speak of with my folks. Mom is now in memory care and we hope her money lasts. If not we will have to move her to a Medicaid eligible facility. Thank you for this series on dementia. It's prevalence is exploding and people need this information.
I’ve shared this video with a dementia caregivers group I’m part of on facebook. Hoping it will help some members of the group! Thanks as always for sharing!
Sending love and strength to you. You are extremely considerate for sharing and helping others. You will reach someone who needs to just see themselves in you.
Thank you for these videos! I feel like we could do lunch together and talk for hours about our Moms with dementia and dealing with their stuff! I’m walking a similar path (but different of course! 😊) and your videos are helpful and calming. Flying back (from TN to CA) to visit my folks again this week and this is good prep!
I think your handling this with so much courage and dignity…
I’m sure your honesty and openness will help a lot of your followers and there families…
Thank you for sharing,
No doubt in a strange way doing the videos has help you make some sort of sense of things as you prepare what to say in each video….God Bless you all….👍🇬🇧
Thank you so much for making this video and this series. You, so compassionately and wisely, imparted so much helpful information, that is sure to be a lifesaver for anyone going through this difficult journey.
I can’t tell you what that means to me. So many times I was like why am I sharing this I’m not an expert I don’t have a medical degree but at the same time when I was looking to find videos from someone like me who was living it I struggled. So thank you.
Listening to you has been so comforting. Both of my parents have dementia. Fortunately they are in assisted living and getting awesome care but currently we are struggling because they want to go to their house on the coast. They are not able to be safe there and don’t have the insight to understand that. I have used your suggestion about sympathizing with them and it has been helpful.
The care homes over in England are only private ones for dementia/Alzheimer's and you have to pay a lot of money for this. We kept her in her warden assisted flat by the seaside with carers coming in to help her for as long as possible. Until she walked out of her flat and managed to get lost, she escaped quite a few times without the carer and once she actually was walking and broke her arm. This seemed to affect her Alzheimer's and it was a downward spiral and had to find a care home very quickly. There werent meant many ones near where she lived and certainly none our government would pay for or would assist her with her payments for the home. She was only in the care home for about 4 months and it was awful to see her disappear before our eyes - truly like a prison sentence. We also believe that my parents covered up Mum's Alzheimer's and she was always saying no I am okay but it wasn't until her older sister had Vascular Dementia/Alzheimer's that we noticed the changes. We also believe her mother had the same disease. Mum managed to celebrate her 90th birthday in the January but when my Dad died in 2011 everything changed. She was a caring Mum and Nana/Great Nana and she would say very strange things. She was quite verbal about saying we were all mean and didn't care about her and actually tried to hit my sister. I am glad that you are getting all the right treatment for your Mum. xxx
The process is so incredibly hard and although she’s in a great place right now your post is a great reminder that things can change on a dime. Thank you for your kind words.
Having gone through the process, Jen's general points are on target (every sitch is kind of different). If you are new to the process, Jen's story will bring you peace when you need it most. What a gift.
Blessings Jen and sending love and light to your mom. ❤️
You were very fortunate to find a lovely, caring facility. Unfortunately, not all fit that category.
Thank you for sharing. Your videos are inspiring me to see things differently.
We are just entering the non-verbal stage with my mum and she seems to choke on her drinks quite often now. As you say, doctors are not able to give a time horizon, so we wait, and each visit I don’t know to expect. There will be no more meaningful conversations for us sadly. You are wise to savour the ones you’re having.
I can deeply relate to all of this.
Thank you so much for sharing such a personal and emotional situation so honestly. Your videos are much appreciated!
Jen, i put on your previous one about myself and friends clearing out a house, we did not get much money for items but we did get a lot of things to good homes as it were.We only had about a month, but we're getting there.
Aww! A blessings to you and your family
These videos are so helpful as I am going through this with a loved one. Thank you, please keep posting.
Thank you for taking the time to make these videos. I’m so interested in your next one too.
I really admire how you are handling this difficult situation. You are so poised and level-headed. Your perspective on life is so appreciated and makes me want to live more thoughtfully and with more mindful intent - regardless of the challenge/situation.
Oh I don’t know it’s pretty easy to be calm about it for 30 minutes to film - I’ve had plenty of hard days!
Thank you for putting this (and you!) out there. I’m a clinical psychologist who works with folks with mild cognitive impairment and their caregivers and I can tell you how sharing your experience, with compassion for yourself and others, will be so helpful. I also hope that this offers you much with your journey as well! My best to you Jen.
It's so sweet that you're sharing this. I'm the most annoying child so one day I soaked my dad's hand when he could not calm himself (put his hand onto warm water with salts) after a few minutes he scolded me by name (I caught my mom crying)
If you haven’t yet, talk to estate planning attorney in your state. There may be ways to preserve funds and not spend every last dime on care. There might not, depending on the state, but it is worth speaking to an elder law attorney on the matter
Thank you so much for sharing your personal experiences. I know that this information will be very helpful for me and my siblings when the time comes for us to go through a similar journey. God bless you.
Prayers 🙏🏻 for your mom and her family 🙏🏻🥰 It's never easy to feel you are losing your parents, just live in that moment and enjoy what time y'all have with them🙏🏻🥰 Thanks for sharing this very sensitive subject 😊 God bless
Thank you so much! One day at a time.🥰
My mom still thinks she can go back to her house. She gets riled up real easily most times when we try to redirect. So, many times she just gets angry and dismissive. We then leave after a while because we can’t get her to go in another direction. I don’t feel badly about it because in 15 minutes, she doesn’t remember that we were even there. I feel if she moves to Heaven before me, I’ll grieve the relationship we never really had.
We live 2-1/2 hours away, so it takes planning to get there with our schedules down here; unfortunately, she never got into technology (she was NOT going to pay for a device or internet), so FaceTime is not an option.
Jen, every time I watch more of your story, I just want to start by sending you love. I am looking forward to seeing how you make changes in your own life. Thanks again for sharing this.
Thanks, Tammy. I’ll admit this is not the easiest season….but we are getting through! Grateful for you.
I think you are very wise.
Watch out for medicaid as well. If my Mom's funds ran out before she died, we had her in a facility that accepted medicaid which we would have had to qualify her on to keep her there. However, she passed before that time. But we got my mother-in-Law on medicaid (picks up bills medicare won't cover) because she had very little income and savings- but she did have a house that didn't count against qualifications. HOWEVER, as soon as she died we found out that the government requires states to put liens on the estate of people who qualified for medicaid to get back monies spent on them. So yes you can keep your house, but when you die it is not inherited by your descendents but has to be sold to pay back the money medicaid spent which in fact is only a loan!!!!! Your state may vary and I don't know if any expenses are exempt. But consider this if you need to qualify for medicaid. I know it is there to prevent people who are not destitute from using it and hiding money, but this was a shock.
When my grandma passed after years of dementia I didn't experience grief, I had already gone through the whole process and it was strange to not feel acute pain at her passing. Thanks for sharing your thoughts.
Honestly? I’m hoping she doesn’t go that long and I’m sure it was a blessing for all of you when she passed. I never thought I’d say that but this is not a kind disease.
Hahhh shes already planning her next life bless. If you read this then know she wont be around long. Spend as much time with her as you can. About 2 months id say. Lots of love and strength to you.
Hi Jen. Thank you for such a heartfelt video. This is so hard and you have handled it with grace. My prayers are with you and your family. Also just a note- I think the title says part 4 but you mentioned you are posting a part 4 next. This title may be incorrect. (In case people are interested in your series). Thank you. Be well. ❤
My mom is my caregiver for my dad and she adores my dad. She ignored signs for years: he ignored others opinions and easily got lost
That was so helpful and timely for me. Thank you! My issue is that I was able to get a handle on all her "things" (bills, banks, insurances, etc...) because I have a POA. Now, I've come to realize that she thinks I am stealing from her, and she is going behind me and issuing a revocation of the POA which is locking me out of everything that took me so long to set up. She now is attempting to get a new POA and Will executed that puts her boyfriend (who is financially exploiting her) in charge of everything! What can I do?? She refuses to go to a Neurologist to get any diagnoses.
My moms memory care facility costs $7800 a month. She was not doing well isolated at home.
You continue to be with them for them - but also for you. When they die you won’t have “I wish I had’s”.
Thank you❣️
Love you SO MUCH!!
I love YOU so much!
My grandmother moved into assisted living in 2019 and I’m curious to hear from others. One of the things that was surprisingly challenging for her is they would not acknowledge when someone had passed away. I generally understand the reasoning but the psychological impact of that I think is noteworthy. She has the same group she would sit and eat with or play dominoes etc and then one just wouldn’t be there anymore and no one would talk about it. I imagine going through the phase of life where all of your family and friends since childhood pass away is difficult, and going into assisted living you aren’t going to funerals every week like you used to, but not acknowledging it at all eventually wore her down and she felt like no one would care when she died. I was surprised by that part of the experience for her. Is this the norm or do you think others host maybe a weekly service for those they lost that week. With an environment with at least 85+ and significant decline, it’s reality to experience loss. The lady she got her apartment of was 107 when she passed and had been there for over 10 years.
Which Supplemental Plan does your mom have? Has this plan helped to cover the costs of assisted living?
GREAT SERIES!
She has a plan from USAA and no, no supplemental medical plans that I’m aware of cover anything for her care. Some long term care policies cover it but from what I’m hearing those can be tricky to use and still don’t pay 100%.
I am caring for my mom in her home. Her current diagnosis is mild to moderate dementia. I only have one brother. He’s very unscrupulous. We have put everything into place to protect her and his sons (my nephews) from my brother. One of the most valuable pieces of paper you can fill out is the transfer of deed upon death. Not only will my brother have no claim on her house when she dies, it also keeps Medicaid for coming for her house if she needs long term care in the future and runs out of money. Get a good estate attorney. Look into it. Ask questions. Ask everything you can do to protect your loved one and your family.
I’m so sorry you and your family are faced with this. Alzheimer’s/dementia needs far more awareness and research than it gets. I spent a decade working in long term care, the last several years in a memory care unit (all patients with advanced dementia but not medically complex). My grandmother also passed with vascular dementia. So I see you, and all the others who may read this who are caring and loving and grieving someone with dementia.
Personally I’m not a fan of the term “long goodbye.” I feel that ignores the fact that you basically lose the person twice. It isn’t like you do all your grieving in one long protracted go and then you’re done when they pass. Rather my experience has been that we grieve the loss of who they used to be and the relationship we had over a long period, and then when they pass we grieve the loss of the current person and what our relationship had become. Sometimes that second grieving process is shorter, sometimes it’s longer. Sometimes it’s easier, sometimes it’s harder. Anyway is okay.
It sounds like you have arrived to a very healthy place a lot of people struggle to get, where you recognize that what you have is today, you have this conversation. Loving someone with dementia is very much about practicing mindfulness. The past does not exist for them in any sort of concrete way. The future is highly uncertain. So focus on now. Remember that even if they aren’t sure who you are or all you have is the simple joy of eating ice cream or drinking coffee together, they will be happier in those moments for pleasant company than without you there.
Also on top of encouraging people to start going through their things sooner rather than later and meeting with a good estate lawyer to get paperwork in order I also highly recommend people look into long term care insurance. Dementia care can easily run $5K-$10K a month, and that does not include clothes, anything beyond the most rudimentary personal care products, or any discretionary allowance. So unless someone either already has nothing or has vast wealth, trying to pay those bills is going to be a huge problem especially if the person is physically in good health and may need care for a decade. Long term care insurance will often cover a very large chunk if not all of that. Do read the fine print and do look for a policy that will cover home health and assisted living as options as those are more common needs than skilled nursing and some policies will only cover skilled nursing.
This is such a fantastic comment!
Thank you ❤