https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry Style Advice for Fashion Lovers en-US Fri, 17 Apr 2026 19:22:43 +0000 http://bbpress.org/?v=1.0.2 q https://youlookfab.com/welookfab/search.php https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2336746 Mon, 28 Aug 2023 18:08:01 +0000 Laurie 2336746@https://youlookfab.com/welookfab/ <p>Haven't scrolled back up to see if Atul Gawande's "Being Mortal" is on the book recommendation list in this thread, but I'm deeply into my re-read of this outstanding book about the failure of the US medical industry to deal adequately with end of life. Very interesting discussion of the evolution of senior living concepts and facilities. </p> <p>Recommend this book to anyone with a human body, and I hope it's made its way onto the curricula of all med schools since it was published 9 yrs ago. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2336652 Mon, 28 Aug 2023 04:12:25 +0000 Debbie 2336652@https://youlookfab.com/welookfab/ <p>April I don’t know how I stumbled on this tonight but I am happy to learn I am not alone. Mine is not elderly parents. It is my husband. He was diagnosed 6 months ago with dementia. He is angry and will blow up in a heartbeat. It is hard. When I try to discuss LTC he screams he doesn’t have dementia. He argues with the Drs. The therapists everyone. This is definitely a journey. I have hired a new housekeeper who comes once a week because the old one couldn’t cope. All this to say I am thinking about you and I know how difficult this is as a caregiver. I hope your Dad gets some relief soon.</p> <p>Thank all of you for the book recommendations. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2336198 Thu, 24 Aug 2023 20:59:43 +0000 Laurie 2336198@https://youlookfab.com/welookfab/ <p>MsMary, I am avidly following along. You sound just like Roz Chast! To hear my mother tell it, everything was fine, nothing needed to change, and "you know, they do NOTHING for me here (for all this money)!"&nbsp;</p> <p>Meanwhile she is doing better, and <i>looks </i>better than she has in 2 years, after 2 months of being handed her 14 pills in the morning, and 7 at night, PT on site, meals prepared, happy hour (every day), and no running and up down the basement stairs doing 28 loads of laundry a day.&nbsp; Her take: she is PERFECTLY FINE to go back to living at her house!&nbsp; Arrrrrgggghhhhh.&nbsp;</p> <p>Yep, we go through this living hell FOR NO REASON!&nbsp;&nbsp;</p> <p> </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2336177 Thu, 24 Aug 2023 17:09:59 +0000 MsMary 2336177@https://youlookfab.com/welookfab/ <p>Laurie, if you're still reading, hugs to you!! I was surprised to learn that a huge percentage of people who end up in assisted living, end up there as a result of a crisis.</p> <p>Anyway, funny story about the furious parents: about six months after my parents were reunited in their new assisted living place, which was close to my house, they were at my home for Thanksgiving, along with several of my friends. One of my friends turned to my mom and said, "Milly, how did you come to be living in this town?" And my mom glared at me and said "We were just sitting in our home one day, DOING PERFECTLY WELL, and Ms.Mary came and said 'pack your bags, you're moving to my city FOR NO REASON!!" Heh... </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2336142 Thu, 24 Aug 2023 10:50:19 +0000 April 2336142@https://youlookfab.com/welookfab/ <p>UPDATE: spoke briefly to my dad yesterday.&nbsp; He said, "She'll stay with me as long as she can."&nbsp; </p> <p>Me: Of course, Dad, but please please please ask your contact at the foundation if they will cover some in-home help so that you can have a break.&nbsp;&nbsp;</p> <p>If my dad tells my mother she must accept an in-home person for at least four hours a day so he can take a break from the strain of worrying if she's fallen, if she's forgotten her meds, yadda yadda yadda, she might do it, despite her "I don't want strangers in my house" refrain. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2336028 Wed, 23 Aug 2023 15:08:39 +0000 judy 2336028@https://youlookfab.com/welookfab/ <p>Oh April and all that are going through this with their parents...it's a very hard time of life, for them and for you.&nbsp; </p> <p>My parents have been gone nearly ten years now.&nbsp; They died a year and a half apart and were very old.&nbsp; Though my father had Parkinson's the last five years of his life, he didn't have dementia.&nbsp; My mother cared for him along with home health help which they had paid into an insurance plan when they were younger.&nbsp; I lived on the opposite side of the US but went to visit twice a year and stayed for weeks at a time with them.&nbsp;&nbsp;</p> <p>Prior to my fathers illness, all of us kids...there are four daughters left now...tried to talk to them about living in a smaller place, closer to town.&nbsp; They had retired to a solar house in rural New Hampshire, with a wood stove, not an easy existence for anyone.&nbsp; Or what would happen if one of them passed before the other.&nbsp; They were absolutely not interested in having any of these conversations.&nbsp; They didn't fight with us, they just didn't engage the subject.&nbsp;</p> <p>In my case, it turned out my parents were right to stay put where they were.&nbsp; And not to listen to any of our concerns.&nbsp; And we were right to trust them to know what they needed.&nbsp; It would have just been a battle anyway, and really it was their business, not ours.&nbsp; When they became more house bound with my fathers illness, the huge windows that looked out on the woods, and southern light streaming in in their own home, surrounded by things they loved, provided more comfort for both of them than being in some small, expensive assisted living place (like my in laws were living in).&nbsp; Home nurses and physical therapists, and eventually for both of them, hospice nurses, were only too willing to come to them.&nbsp; As well as their friends, church members and neighbors.&nbsp; They were participators in their small town. They both died at home, surrounded by people who loved them.&nbsp; For all of us, it was a special time, for us to be with them and for them who never wanted to be in a nursing home or hospital.&nbsp;&nbsp;</p> <p>I realized that some of my concerns were to prolong their life and their concern was only to have their last years comfortable and together.&nbsp;</p> <p>Of course with dementia, it's a different matter, one must step in.&nbsp; My heart goes out to any of you dealing with that.&nbsp; </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2336025 Wed, 23 Aug 2023 13:55:08 +0000 unfrumped 2336025@https://youlookfab.com/welookfab/ <p>I agree about the finances. No great advice on how to get the information, but just glad you are aware of how that can be an easy diversion to avoid realistic discussions. Promises are cheap, wills and wording can be very specific or limited and can be contested. The devil is in the details! Living facilities aren’t “medical care” which is why they aren’t covered by typical insurance. Medicare never covers nursing homes either- only Medicaid, which then also doesn’t cover assisted living. The other thing people don’t realize is that NH’s typically have a specified number of “ Medicaid beds” and when those are full, even if you spend down/ qualify financially, you may have to wait, or start out as self- pay, or broaden the search ( location, quality) to ones that have openings.</p> <p>Just keep making a list of important questions, information and work through it as time and energy ( and cooperation) allows. And find ways to switch off to happier thoughts and activities along the way. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2335999 Wed, 23 Aug 2023 11:38:19 +0000 April 2335999@https://youlookfab.com/welookfab/ <p>I must gently yet firmly get my dad to start looking into all options and FIND OUT WHAT IS COVERED BY THE BILLIONAIRE'S BEQUEST.</p> <p>He keeps dodging my "Do you know if that's covered?" questions but also won't give me the contact info to just ask the questions myself.&nbsp;</p> <p> </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2335957 Wed, 23 Aug 2023 01:32:10 +0000 Aquamarine 2335957@https://youlookfab.com/welookfab/ <p>Yes, Laurie, 24/7 hired care is a fantasy and crazy expensive compared to all the other options…at least in the U.S. The expectations (some of) the elderly &lt;ahem&gt; have are fantastic too. “Maybe a grandchild will move in and take care of me and the &lt;4 bedroom on an acre of land&gt; house.” </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2335889 Tue, 22 Aug 2023 14:32:48 +0000 Laurie 2335889@https://youlookfab.com/welookfab/ <p>The fantasies that my mother has come up with are endless....and people say such idiotic things. "I'll come to your house&nbsp;<i>every night </i>and take care of you!" Yeah, no. My sister and I literally had to confront the "friend" who made that little, empty promise. My mother is telling everyone that she is in a nursing home, to get their mis-guided sympathy. OMG - it is the opposite! In fact, though it has independent, assisted, and memory care living, this place doesn't even have skilled nursing!</p> <p>As for "finding a person"...during this summer's nightmare, my father was released from the hospital, only to return 4 days later. During that time my mother was taken to the hospital by ambulance. My Dad was unstable and disoriented (hallucinating, as it turned out, due to a massive dose of prednisone), and I was alone in the house with him and needed to get a few hours of sleep so I desperately hired a service to be available through night. Only 2 nights of this convinced me that I will never hire, manage, or have in-home care for my mother or ourselves. Aging in place is off the table. Within hours, the agency was reneging on who would show up, their levels of experience, etc.. And, it is much, much more expensive to have 24x7 in home care, than even the most costly senior communities.</p> <p>It's amazing how universal this situation is....I'm very depressed about it for all of us, really. And, guys, it's terrifying to think of what is ahead for ourselves because, really, our society here in America is fully unprepared to care for the aged. Or to acknowledge that aging exists, most of the time. </p> <p>April,&nbsp; the idea of him helping her move, but being able to go back to the house for a while if that is feasible, provides a transition step. I hope he will consider it. Getting care for your Mom is top priority at this point.&nbsp;</p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2335862 Tue, 22 Aug 2023 10:15:20 +0000 April 2335862@https://youlookfab.com/welookfab/ <p>Over the past two years, my mother's "plan" has been if something happens to dad, she'll just find a nice lady from church who will move into dad's office in their house and do all the things my dad does.</p> <p>Of course, this lady will be willing to do everything for free in exchange for living rent-free in a house that is not in great shape.&nbsp; She will be able-bodied, a good driver willing to drive my mother to her endless doctor appointments, willing to take care of their large dog and do all the housework.&nbsp; And they'll never get on each other's nerves.</p> <p>I've heard less of this fantasy, er, plan recently as Mom gets more confused, frail, and afraid.&nbsp; Thank heavens!</p> <p> </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2335808 Mon, 21 Aug 2023 22:03:43 +0000 Aquamarine 2335808@https://youlookfab.com/welookfab/ <p>April, my sister’s in-laws kept their home for one year while they acclimated to assisted living (which was down the street from where they lived!). At first, they only stayed for dinner at the facility. Then they started moving a few chairs into the apartment, followed by a TV. Finally they moved the bed and put the house on the market. The kids were very patient during this time, even though they likely lost some money on the sale of the house (it would have sold for more a year earlier).&nbsp;</p> <div><br /></div><div>They did have friends already living in the AL facility, so it helped with the transition.</div></p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry/page/2#post-2335799 Mon, 21 Aug 2023 20:17:32 +0000 April 2335799@https://youlookfab.com/welookfab/ <p>Laurie, if only. They moved to Arizona in 1982, “fotty yeahs ago" as my dad says.</p> <p>There are many facilities near them and many would welcome their dog too. What I would love to see is my dad going to one with her and the dog NOW so she can adjust while he's still alive.<br /> They could keep their little house and go to it every day if they wanted to.</p> <p>Or they could enjoy the comfort of someone else handling meals, cleaning, etc. </p> <p>He would hate that idea for sure but eventually he might also see it as a relief. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335786 Mon, 21 Aug 2023 18:16:47 +0000 Laurie 2335786@https://youlookfab.com/welookfab/ <p>Oh April. I'm living this nightmare right now. My story is a lot like Mary's - both of my parents ended up in the hospital this summer at the same time. Mom went to a senior multi-level facility when she was released, but Dad didn't make it there, and passed away 2 weeks later.<br />Are your parents still in the Pgh area? DM me, I'll tell you about the beautiful place where my mother is now (furious at me, FURIOUS. But it is beautiful and new, and one of the nicest places anyone with experience with senior living has ever seen).</p> <p>I tried for 9 years to get my parents to discuss, and plan. They refused every single attempt, until we were in crisis.</p> <p>I am re-reading Roz Chast's memoir "Can't We Please Talk About Something More Pleasant?" right this very minute! I went to a reading when she was on book tour with it, and have a signed copy. I only leafed through it back then, and thru the lens of what my husband had recently gone through with his folks. But it is certainly resonating like crazy right now.&nbsp; Very poignant.&nbsp;</p> </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335782 Mon, 21 Aug 2023 18:01:10 +0000 MsMary 2335782@https://youlookfab.com/welookfab/ <p>Oh, and while we're giving recommendations of books, etc, there's a great podcast called "Let's Not be Kidding" by a man whose mom has Alzheimer's. It's equal parts funny and heartbreaking and I just loved it. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335778 Mon, 21 Aug 2023 17:25:14 +0000 Suz 2335778@https://youlookfab.com/welookfab/ <p>Oh, <b>April.</b> I just read this thread. I'm so sorry you are dealing with this and my heart goes out to you.&nbsp;</p> <p>You've already received wonderful advice and I have nothing of value to add except a "hear hear" to <b>Donna's</b> suggestion of a joint vow that we never put our own kids through this. </p> <p>My own parents are gone now, and thankfully did not suffer with dementia. "Accidents" felled them, i.e. disasters waiting to happen because they refused all help, except whatever my brother (in the same town) or I (3 hours away) could provide. We did our best. They did, at least, allow a cleaner in, and after my mother broke her tibia she accepted occupational therapy. But that was pure luck -- she just happened to like that therapist. They shooed everyone else away. And my parents were not amenable to the kind of conversation Ms. Mary proposed, either -- although, to her credit, my mother did update her will after my dad died. And to his credit, my dad had left a simple will, which -- once we found it (ha ha -- you can imagine the back story) did not include any awful surprises.&nbsp;</p> <p>There was a long and horrible hospital stay for my dad (actually two hospital stays, because one fall wasn't enough for him) but my mother's hospitalization was mercifully brief.&nbsp;</p> <p>I'm so glad that at least some of your mother's expenses will be paid -- what a lucky break, if it works out! Agreeing wholeheartedly with your plan to get them to talk to you as well. I hope some of this will work out.&nbsp;</p> <p>Also, love Roz Chast. You might also enjoy Tangles, by my friend Sarah Leavitt. It's about her mother's death from early onset Alzheimer's and is sad and funny and furious at times.&nbsp;</p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335679 Sun, 20 Aug 2023 20:18:42 +0000 April 2335679@https://youlookfab.com/welookfab/ <p>Thank you all so much for chiming in.&nbsp; I'm aware that every single person I know with a living parent is dealing with some form of these issues, but it helps a lot to hear from my YLF community.</p> <p>Some things I should have mentioned at the start:</p> <p>1.&nbsp; My mother has an unusually lucky situation financially.&nbsp; In the 1970s she did some private-duty nursing for a Pittsburgh billionaire and in his will, he directed that every person who ever worked for him would have all their medical expenses paid for for the rest of their lives.&nbsp; Now the trick is to get my father to ask them the right questions: what exactly WILL they pay for?&nbsp; Thus far, he won't give me the contact info because he says, "I'm the one they know, they won't talk to you."&nbsp; MAKE SURE THEY KNOW ME TOO, DAD.</p> <p>2.&nbsp; Mr. A and I know that even when seniors think they have done everything right (enrolling in Medicare, buying LTC insurance) when push comes to shove, these plans pay for almost nothing.&nbsp; My late mother-in-law's LTC policy would pay for someone to help her with dressing three times per week.&nbsp; Huh.&nbsp; Medicare will pay for seniors to have a nurse clip their toenails 5 times per year.&nbsp; Per year.&nbsp;&nbsp;</p> <p>I am painfully aware of the waitlist issue and the dramatic reduction in options once dementia is on the table.&nbsp; My late MIL had Lewy Body dementia and was violent and terrorizing all her help, thus her first memory unit expelled her after she smashed glass in the hallway, physically attacked staff, and scared the Alzheimer's patients by pointing her cane at them like a machine gun.&nbsp; Not fun.&nbsp; Once my FIL found a different place willing to take her, their conditions were that she could stay IF she had nursing aides with her 24-7 to manage her behavior.&nbsp; Thus on top of the $11K per month my FIL was paying to house and feed her, he was paying for 24-7 aides and all the other things that go along with a mind and body that no longer function.</p> <p>Despite these lessons from 10 years ago, my FIL thus far flatly refuses to put his name on a waiting list anywhere.&nbsp; So yes, we're getting it from both sides here, but it has been made clear to me that my help and ideas are not welcome on the Mr. A side.</p> <p>The good news (there is some): I texted my dad today and told him we needed to schedule a "planning Zoom".&nbsp;&nbsp; </p> <p>ETA: for anyone who's been here with me, is here now, or fears being in this situation in future, I cannot recommend highly enough Roz Chast's graphic memoir, "Can't We Talk About Something More Pleasant?"&nbsp; Brilliant, honest, unflinching, tragic, hilarious... Run, don't walk.&nbsp; :)</p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335671 Sun, 20 Aug 2023 19:23:47 +0000 Anonymous 2335671@https://youlookfab.com/welookfab/ <p>Dh and I are caregivers too, luckily no dementia, but other issues. It's the part of aging that no one warns you about...Adult 2.0 :/ You think you're an adult at 18, but then when you're the one responsible for your parents- that's a Whole New Level. </p> <p>I'd suggest reaching out to your local senior center, because they'll know of all of the different resources in the area. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335664 Sun, 20 Aug 2023 18:57:48 +0000 kinnick 2335664@https://youlookfab.com/welookfab/ <p>The good news is that your father is not in denial about your mother’s diagnosis. &nbsp;In the early stages of Alzheimers people can make some very trusting poor choices with money. &nbsp;I have seen contents of retirement accounts donated to a “good cause” or used for new “investments”. &nbsp;Your father’s awareness puts is in a position to make sure this doesn’t happen.&nbsp;<div><br /></div><div>Since your mother has an Alzheimers diagnosis the graduated care facilities that will accept your parents as a couple are more limited. &nbsp; Each stage of the Alzheimers decline gets more expensive. &nbsp;When you get to full on last stage memory care you are easily at more than $10,000 a month (in the Pacific Northwest) for one person. &nbsp; By that time many people will have run out of money and will need a place that takes Medicare/Medicaid so when you are looking for the first facility be sure to find one that ultimately takes Medicare/Medicaid. &nbsp;A married couple must use ALL of their money (savings) before they qualify. &nbsp;This means that one partner’s care expenses can wipe out both of their savings. &nbsp;I am assuming your parents do not have long-term care insurance which has its own set of problems. &nbsp;Also, I have heard that some states can force children to cover some of their parents care expenses. &nbsp;That was not an issue for me so I can’t speak to it&nbsp;</div><div><br /></div><div>If I sound like I am focused on money that is not the case. &nbsp;I think others &nbsp; have covered the pain and anguish that is so much a part of this problem. &nbsp;It does sound like you are going to end up with a lot of the responsibility for your parents. &nbsp;I tried warning everyone in my family that if they didn’t step up in the early days then I would not take care of everything when things went badly wrong. &nbsp;Of course, I didn’t hold myself to that boundary. If you want to follow that path with your father (and family?) then you may need to see a therapist as well as get legal advice as it is a hard road. &nbsp;</div><div><br /></div><div>I think the hardest part of longer, serious illnesses is that being a caretaker is so difficult that for a while most of your memories and feelings are negative. &nbsp;That does pass and the good memories come back. &nbsp;</div><div><div><br /></div></div><div><br /></div> </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335637 Sun, 20 Aug 2023 16:33:21 +0000 Minaminu 2335637@https://youlookfab.com/welookfab/ <p>April, I really wish I'd have some words of consolation but I am just in awe of all the above comments and it's really lovely to hear that this experience is part of life for so many of us.&nbsp;</p> <p>Both Mr Minu and I had ageing parents living in a different countries. His mum was a very independent and strong lady and once it was confirmed that she had dementia, she put a plan in place for when she was no longer able to look after herself. Her mum had dementia too and she had to look after her whilst living abroad, she did not want Mr Minu to experience that. It took away a lot of stress and heart breaks.&nbsp;</p> <p>For a while, we were commuting between the three countries until his mother passed away. Nowadays I still try to visit my elderly parents every 2 months, which is stressful as mine do not want to make any plans for the future. I am aware that they are not ageing well and don't have a great relationship with them, particularly with my dad as we are so different. He was a military man and kept his radical and old fashioned views which have negatively affected my mum too. It saddens me that despite his selfish behaviour, controlling nature (in all aspects, from the way she looks to the financial side) and many other issues, she is still on his side! She would love to downsize and move to suitable environment but it is not possible with him.</p> <p>I tried to have conversation as MsMary suggested and he was so enraged that I feared for my safety. My sister is the only person who can handle him as he always had a soft spot for her, but I appreciate that it is a heavy burden for her.&nbsp;</p> <p>I'll keep an eye to this thread as I am hoping I'll learn from the experiences in this forum. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335624 Sun, 20 Aug 2023 15:25:14 +0000 cat2 2335624@https://youlookfab.com/welookfab/ <p>This is such a painful stage. Do have a candid chat with your dad about whether they have the documents pulled together so that things will go the way they want them to. I had to nudge my dad into updating his will; he had an old one that was very out of date. The lawyer then got him to focus on the durable powers of attorney for healthcare and financial matters and the DNR forms needed in our state. I also had to nudge him into accepting help; we started with a gardener, and then a handyman. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335606 Sun, 20 Aug 2023 12:55:42 +0000 ChristelJ 2335606@https://youlookfab.com/welookfab/ <p>So sorry you must deal with this very common situation; it's so hard. My parents were open to the idea of a care facility "some day" but they were forced by a series of medical crisis to move suddenly to one they had not chosen. Beds are not always available when one needs them, so my advice would be the same as kkards says, to get on a waiting list, if your dad would be willing to do that. My mom is still living and loves her facility now after a period of adjustment. Maybe see if your dad would be willing to visit a couple places even if he thinks it's not an immediate need? I feel for you. I'm an only child living across the country from my mom and my life is now centered on traveling to help her whenever possible. It helps so much that she loves her community and having her meals cooked for her! </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335604 Sun, 20 Aug 2023 12:39:13 +0000 cjh 2335604@https://youlookfab.com/welookfab/ <p>I might this add in describing our experience. Since we had succeeded in obtaining financial power of attorney for DH from both FIL and MIL, as soon as they moved from their house, we had a big sale of the furnishings, mower, tools, and listed the house for sale, knowing it would be a disaster if they or MIL tried to move back. This was not done behind their backs. MIL helped sort and chose recipients of many special items, and FIL was very interested in how much his mower and tools brought. But selling the house, a huge task, was a big relief to all. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335603 Sun, 20 Aug 2023 11:55:14 +0000 Olive Green 2335603@https://youlookfab.com/welookfab/ <p>My increasingly vague father refused to go into a nursing home and basically wore out my mother, who had her own long term health issues. This in spite of having an adult son living in the same house, different flat. Dad then refused to honor the DNR for mom (who was real clear) and the result was just awful. Horror movie stuff. Get your hands on the power of attorney and enforce the DNR if there is one in place. So tough either way.<br />He is quite gone mentally and now in his late 90’s, loves his nursing home.&nbsp;<br />It infuriated us all, which is a difficult emotion to have at an already rough time, but I am coming to recognize that it is seldom sane or easy dealing with reduced mental capacity, especially accompanied by physical issues.&nbsp;<br />And, I am at this point myself, with a husband in his early eighties with a progressive disease. His mental capacity is probably better than mine, but physically, I am a caretaker. I gave up on tree cutting and most heavy yard maintenance this year. Hiring out is a lifesaver. I have limited &nbsp;energy. We are lucky to have the means to get some help, I peruse Zillow and can tell where the old people aged in place and were taken out feet first, funny that! and the house and grounds are in ruins, they simply stopped being able. It’s an odd thing for previously capable people to face.&nbsp;<br />We both have DNR’s, are considering moving to an end of life state, and have no expectations whatsoever of receiving help from family. Thank god.<br />So appreciated this thread, and Ms Mary pretty much nailed it.&nbsp;</p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335586 Sun, 20 Aug 2023 08:38:00 +0000 pirouette 2335586@https://youlookfab.com/welookfab/ <p>As others have said this is a very tough situation. My story is very like Bijou’s. My mother had a stroke and became physically paralysed on one side and cognitively impaired. My Dad had cancer at the same time and they lived about 200 miles from me. We got my mother into a nursing home and supported my Dad living alone he was fiercely independent and continued to drive even though his eyesight was very poor. It was as others have said the most stressful time of my life and it certainly affected my own health. The good news is my mother loved the nursing home and was very happy and lived for 10 years there.&nbsp;<div>My Dad died after only one year living alone he refused any help at home and remained fiercely independent till the end.&nbsp;</div> </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335573 Sun, 20 Aug 2023 06:05:25 +0000 Bijou 2335573@https://youlookfab.com/welookfab/ <p>April, please take care of yourself as dealing with this is tough and this may be a marathon. </p> <p>At 68 my Mum had a stroke and was paralysed down one side and whilst Dad was dealing with neurologists for her, he was diagnosed with Parkinson’s. So there they were with two horrible and chronic conditions and were in it for a 10 year period. As one of 4 children, I was lucky to share the load with my siblings, but we were all shattered, it felt like death by a thousand cuts. My brother and I had joint financial power of attorney and my sister had power of guardianship. If possible it is good if these roles can be separated and best to be set up whilst the person has all of their faculties.</p> <p>My DH’s parents are in their 80’s, I’m dreading going through round two of this. All I can say is this is an issue that most of us have to face, with our parents and for ourselves, it helps to share these experiences. Wishing you strength in this tough leg of your journey. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335570 Sun, 20 Aug 2023 05:19:12 +0000 Jenni NZ 2335570@https://youlookfab.com/welookfab/ <p>I’m with unfrumped (same profession). So many people want to just die in their sleep! It happens occasionally but overall very rarely and what my own parents-in-law aged 87 and 92 say “We’d like to be taken out of here in a box” is so unlikely. So we are facing a similar situation with them although it is physical poor health rather than dementia.<br /> I agree with all the advice so far about trying to get powers of attorney for both financial and personal health issues covered, living wills if possible, etc. and I also often tell the adult children to recognise in advance that their dementing parents may hate them for a while and to become emotionally prepared for that- this does seem to help them to realise that beforehand. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335554 Sun, 20 Aug 2023 03:27:11 +0000 DonnaF 2335554@https://youlookfab.com/welookfab/ <p>Let us all vow that we will never put our kid(s) through what our parents have.</p> <p>When it became pretty obvious that my mom couldn’t take care of herself or her large house, I moved her into a senior living facility where she could get her meals and housekeeping. It was quite a struggle. I think she lasted there three months or maybe four. While I was out of town due to my brother-in-law’s death, she moved herself back into her house. Her big complaint? Too many Republicans at the facility which also had a Democratic Club. Sheesh! Plus, she was more a Biden Democrat than a Bernie Dem so we’re talking pretty mainstream here. Any excuse. </p> <p>She eventually died at home alone with it 100+ degrees inside because the maintenance company she had hired had connected the AC to the heat. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335552 Sun, 20 Aug 2023 03:07:01 +0000 Aquamarine 2335552@https://youlookfab.com/welookfab/ <p>I’m going through something very similar with my Mom and it’s been quite traumatic for a number of reasons and on a number of fronts. (I am convinced my doctor will say I have high blood pressure at my physical next month…it’s been that stressful.)</p> <p>The only good thing in all of this is that I am determined NOT to do this to my children. My parents never saw anyone get this old, so they never had a realistic view of very old age. </p> https://youlookfab.com/welookfab/topic/asking-people-whose-parents-have-had-dementia-long-sorry#post-2335548 Sun, 20 Aug 2023 01:22:10 +0000 cjh 2335548@https://youlookfab.com/welookfab/ <p>My heart goes out to you in this difficult situation. We have gone through this. Perhaps the hardest part was hearing over many years, “when I need to go to the home, just take me there”, implying there would be agreeable conversation at the least. But stubborn independence, refusal to admit they couldn’t care for themselves or the house or yard any more, and also not willing to allow anyone in to help, except DH who couldn’t do it all in any case. It wasn’t good they lived in a small rural town with barely any senior or medical support or even meals or groceries! All the relatives they didn’t want to leave were also old, ill and dying, or young enough to have their own elders or careers and families to care for. MIL became mean, insulting and accusatory. They both said they wanted to die at home and they could take care of each other. As unfrumped says, it’s not such an easy exit.</p> <p><div>We read all the advice online, talked to all our friends in the same boat, and basically, just knowing everyone else is in the boat is pretty much the only encouragement we had at the high crisis time.&nbsp;</div><div><br /></div><div>It did make a small difference to say DH couldn’t do it all and they would be doing a nice thing for him to go where help was built in, as Kyle says above. Eventually they just had no choice and were pretty much strong armed into moving. It was stressful and distressing and sad and angry, but fortunately it turned out okay. FIL passed away four months after they moved - his health was worse than we knew - surprise, surprise. Still helping 96-year-old MIL from 45 miles afar, but she’s in assisted living, has a safe place, good nutrition, nurse supervision, activities, and knows how to use a cell phone, e-mail and can still see, read and almost hear things. </div> </p>