92-year-old mom moved into assisted living today and I'm having the guilts because I am not clear what type of dementia she has. I have noticed confusion and new strange behaviors for the past 6 months to a year, but it escalated noticeably after her fall and subsequent hospital delirium. Delirium and sundowning has greatly decreased with proper medication. She stayed within her senior community, where she lived independently for 6 years in a beautiful one-bedroom apartment and moved today to a studio in the assisted living unit after 2 weeks in rehab. She requires help with the physical aspects of dressing, showering and toileting and meds due to severe shoulder pain and weakness and ongoing confusion. In the hospital my POA was activated and thus, she had to go to a studio setting per our WI state law when POA activated. Her cognitive state seems to vary so much, during those times when she seems more lucid, I find myself second guessing if I made the right decision. I have been reassured by the APS SW that it was the right decision, because she also was seeing lack of competence and mom did not pass the neuropsychic testing. I called mom tonight, after being with her most of day to get her settled and she thanked me for coordinating the move, and that she knows she needs help, but does not believe she has dementia (both her twin sister and older sister passed from vascular dementia and Parkinson’s dementia, at ages 90 and 94, respectively). I know she is not happy right now in her new dwelling. I displayed all her photos, angel collection, etc. and she says it is too cluttered in her studio. I will help her cut bait next week. Right now, I am still too sore to move after 2 days of nonstop cleaning, organizing etc. My brother refused to help, and my husband cannot lift more than 15 pounds due to past severe heart attack. I am 68 with health issues myself. I feel so sad for her. We have always had a very tumultuous relationship, but have made peace and apologized, on both our parts, since her fall. She asked me if this will be her last home before she dies. It broke my heart, but I was honest and told her it probably would be. Based on what occurred so far, and that the Dr. felt it was safest for her now, but only God knows what lies ahead. He and I are certain her dementia will continue to progress, but unclear what type she has. Or if it was due to past mini strokes. Just feeling guilty and apprehensive tonight. My brother also is of course giving me trouble, and lip service only, after telling me he did not want to be involved or help and then I must watch mom crying because he won’t even call her. He pulled the same thing before and after my wonderful father passed. I had to organize moms move, get their condo cleaned out and sold. She wanted to make a new start. No help whatsoever, just criticism. I'm totally drained and so tired of always having to be the strong one.
The story of the unhelpful yet critical brother is so common. I have one as well.
Try to do a changeover to the other g-word, which is GRIEF, the word appropriate for what you and your loved one is experiencing daily now in terms of loss.
Grief brings mourning and this is worth crying over.
So that takes care of the guilt portion of this.
On to the bro. You know him. He isn't changed. And you know you cannot expect to change others. He isn't in charge (I assume); you are. Embrace that responsibility and move on. He will have to come to his own peace best he can.
Everything you have said here tells us that you have helped lovingly and honestly, and that your heart is absolutely breaking. So that leaves you AND Mom heartbroken and grieving. Don't try to walk away from that grief. Let it happen. There is a beauty in grief that comes of love. Your mother, given the state of this our world is more lucky than most-- blessed, even.
If someone who has helped and accomplished all that YOU have for your Mom cannot embrace and take joy and comfort of that, where exactly are we?
My heart goes out to you. I am so sorry for the heartbreak for you and your mom. Help her put together a scrapbook. Talk to her about her memories. Make your OWN memories. We have one life and your mom's is drawing now to a close. Please don't waste time with feeling inappropriate guilt. Please allow yourself to take joy in this your mom's last time on earth, and in your loving her as you do.
While you live she will never truly be gone. Trust me, I am 80, and my Mom I carry with me in all I do.
Get your mother evaluated by a dementia center and see if you can locate a Geriatric Psychiatrist who is close by or can meet via Zoom. Let the therapist do the talking for you as you all meet together.
https://www.alzheimers.gov/taking-action/national-research-centers
Here's the thing. Like you I was plagued with guilt and second guessing, but all that mental torment doesn't change anything. I was in denial about how bad she actually was, how bad her (also undiagnosed) dementia had become. In the UK, our local council has a duty of care and they go to interview every person who's been placed in a home to conduct a 'Safeguarding' assessment to make sure the person's need to be in care outweighs their 'deprivation of liberty'. They sent me a copy of their report, six months after her death (unaware that she'd died). It was tough reading; the psychologist who interviewed her found that she didn't know where she was and couldn't remember anything, eg places she'd lived, her own parents and husband (my dad) and barely remembered me even tho I was visiting regularly. I cried on and off for two days; it brought back so many difficult memories. BUT the report acted as a reality check for me. It brought it home that mum really was in the end stages of dementia, that she needed 24/7 care and 2-person care for personal hygiene. I finally accepted that I couldn't have continued with her at home, that she needed professional care, and that we did the right thing.
So yes, I've learned that the guilt and sorrow is normal. There's no "perfect" decision, only the best decision we can make. I accept now that it was bound to be painful whatever we did, but we did the best and only thing we could have done in the circs, and that - as others have said - 98 is a great age. Few people get to live that long, and she had really had enough of life by then and just wanted to sleep... which she did. The pain doesn't go away, but it's eased a bit by knowing that we did the right thing for my mum, and that you are doing the right thing for yours. xxxxx
I pray for your continued support and love for your mom. Cherish every moment and conversation with her. Be glad she accepts your honesty and loving support. You will be just fine.💕
AL is an adjustment, but she will settle in. Encourage her to participate in activities. The staff will help too. Show up on occasion, go to activities with her, start conversations with fellow residents and get her involved in the conversation. Be friendly towards management and staff and ask questions. My SIL snubbed the housekeeper at my MIL's independent living facility. The housekeeper was the sweetest person and considered my MIL a friend as they talked while she was working. The staff is on the front lines and will express concerns to management and family when they see a change that even family may not notice. In the case of the housekeeper, she was the housekeeper for the entire four years my MIL was in independent living.
I don't know the situation with your brother. If he is local and wasn't willing to help when asked, that really stinks. I know what a physical and mental strain it is to be packing up and cleaning. Hope you had help with moving furniture. If your brother is a critical person and questions your decisions, you may be lucky he didn't want to help. I would not have wanted my out of state SIL to help move her as she is very opinionated and hard enough to deal with in non-stressful situations. She second guesses all decisions her brother and I make regarding her mother yet she has come to town only three times in four years and does not call her mother very much at all. My out of state BIL probably would not have been that much help and he is self-employed and has a teenager so his down time for helping is very limited. Thankfully, he is more grateful than critical about our decisions and actions with his mom.
My MIL started making comments that she was not going to be around that much longer. Heartbreaking. It started when we talked about moving her from independent living to get her more help. When my hubbie took her to the doctor, he talked to her. What he said was that seniors her age start thinking about their own mortality. Based on her responses, she had a healthy, normal, rational process of thinking about it. If your mom becomes repetitive with her comments about dying there, maybe her doctor can help understand if her thoughts are natural or of a concern. My MIL discontinued the comments to us about dying soon after Christmas. She had moved into AL in late Nov last year. Maybe her fellow 100 and 103 old residents set her straight that she could live there a very long time and have fun:)
Is she safer where she is now than in Independent Living apartment?
Will she have more help now?
And does she need the extra help?
Did she need the large apartment she had before?
Is her new place comfortable and safe for her?
She will adjust.
Yes it will take a bit of time
No one really wants to move, to change what they know.
(My only thought on the move and if it will be her last one..I am of the belief that someone with dementia should be in Memory Care not in AL unless there is the ability to have it secure so a person with dementia can not wander out. )
Rest easy that you are doing the right thing. Try to ignore those that give you a difficult time about your choices. If you are making the choices you make in the best interest of your mom that is all anyone can ask of you.
As to guilt, set it aside also, because you didn't cause this and you can't fix this. Guilt belongs to felons.
As to loving ALF and thinking she belongs or does not, your Mom may be like my brother eventually, who said "You know, hon, it's like the army when I was younger. I couldn't love it, but I did make the best of it". He went from quite unhappy to being the one who picked the roses daily for the breakfast tables, and got BETTER there because I was doing all his financial work and his mind was free.
You did the right thing. Mom is now in care. You can visit and help her and she is safe. You, again, did not do this. Use the right G-word because the words we say to ourselves matter. Use the G-word GRIEF. That's what you are feeling. Grief that not everything can be fixed. Grief that some things can be endured.
Dr Laura on her podcast recently talked about "happy". Asking WHEN were we happy all the time in our lives. And yes, that's a question to consider. Life isn't about happy at any age.
I am glad that you answered your mom honestly and I congratulate you on that. There is to my mind no such thing as a therapeutic lie for the most part. The answer is yes, this is her last home, BUT you will be there to support her in what ways you are able.
As to the siblings, set that aside. You already always knew what they would be, and they are, and that won't change, so why do any circular thinking about it? Just adds to an already full plate.
My heart goes out to you. And to your Mom. As with my bro and myself, this is about heartbreak. Allow her to talk. Put your feet up and talk with her about it. My brother and I did that when I would visit (even tho we were a full long state away one at one end and one at another) and we learned so much. And yes, there was hurt for us both. I so wish you the best. Life is a journey. And this is this part of the trip you two are taking. Good luck.
down for the adventure. Guilt and second guessing is part of the experience. One year past my mother passing at 100 and I have moments of “what if”.
You did the right thing.
You should have hired movers. For 2 or 3 hours of work, it would have cost her $300 to 400 and your back muscles would have been better. I am your age and I cannot move a sofa that I bought, so I just hired movers to protect my arthritic bones. Consider hiring if mom needs to go a level up in the future.
Your brother is a jerk. I hope your mother gives him some silent treatment out of this. You might want to think the same.
Give her a couple of weeks so that she can independently make new friends. Give yourself a couple of days rest before you tackle any more moving. You can tell your mom that you need a "back" rest.
As far as a diagnosis for dementia. Since my mother had no behavioral issues other than repetition, my sibling and I did not press for a diagnosis since we watched another relative in the past go through it. We did not care whether it was vascular or Alzheimers if she required no medicines to treat. There is no roadmap. Just plan to stay a step ahead next time. Watch for more memory problems and consider MC searches before mom gets too far along.
And after writing this, I just realized I parroted Lelonnie1
You’ll adjust to this new arrangement and so will your mom.
Keep us posted on how you and your mom are doing.
Give it time. Everything usually shakes itself out, and there's no rush to make the world perfect.
Tonight, just breathe.