tygrlly1 Asked February 2023

Adjusting to assisted living. Any advice managing stress and guilt?

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.

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What on earth is the difference "the type" of dementia your mom suffers from? You should feel "guilty" bc nobody put a label on the type or cause of her dementia, as if most of these doctors know what they're talking about in the first place? The majority of the time they're stabbing around in the dark, flat out guessing when it comes to the human brain.

Surely you're not "guilty" over the fact your mom has had the amazing good fortune to live to see 92, or that she has health issues you did not cause, can't control and cannot cure?

Your mother needs AL because "she requires help with the physical aspects of dressing, showering and toileting and meds due to severe shoulder pain and weakness and ongoing confusion." Plus she failed a Neuro psych test and seems incompetent to professionals. The dementia is just ANOTHER reason she requires AL. Surely you see that and the fact she needs ALL THIS HELP does not qualify her for INDEPENDENT LIVING, that's the truth. If ever there was a candidate for AL, its your mother. And big deal to downsizing one room. A shrunken world makes dementia easier for her to manage.

Whether or not she agrees with or accepts her dx is irrelevant too. My mother's huge ego stood in the way of her believing she had ANY health or dementia issues. Her denial or anosogosia isn't MY problem. My only goal was to keep her safe and well cared for. Not to hang around waiting for a moment of lucidity so I could beat myself up for making the wrong call, when cognition exam results don't lie. My mother lived in Memory Care Assisted Living for 3 years before she passed, insisting everyone ELSE was a "stupid idiot" and only she was a lucid and fully functional adult who looked GREAT for her age. 🙄

Put aside the need to flog yourself for making the right decision here. Just tell mom it's DOCTORS ORDERS she's living there, period. It's hard to understand the level of exhaustion involved with anosogosia and dementia, with the ongoing insistence they "don't belong there" and all of it. Stay away from this chaos for awhile and let her adjust. Then come up with a visitation schedule and List of Pat Answers to repeat as needed.

Your mother has taken enough from you now. She's 92 and well placed. Stop running yourself ragged now and HIRE HELP on mom's dime for whatever remains. What will become of mom if you get hospitalized or die (God forbid) while she's busy carrying on about everything? Who knows, but she will still be alive and cared for by a team of people. Consider the math on that statement next time you decide it MUST be known what type of dementia mom has. We never knew my mom's type either, just that she died after 6 years, getting progressively worse, well cared for by wonderful people who truly cared about her. I have no guilt at all and would place her again in a N.Y. minute if the opportunity arose.

Let your super tone deaf brother's calls go directly to vm, then delete the message w/o listening to it. I've found that little technique to work a CHARM over the years for various family pests. You or Jim a big fat goose egg.

Let go of these matters which you have NO control over, and focus on YOURSELF now bc mom is not the only important person here. SO ARE YOU.

Helpful Answer (17)

Thanks for the reality check. You checked all the boxes for me, and I appreciate your candidness. I have always been the fixer in my family , and have always had to be strong ....She and I had the discussion today on how blessed she has been to be as independent as she has been for so long. I feel that she is grieving, and will eventually adjust too.,because she has to. She hated rehab, and spoke fondly of how nice they were to her, when she left there today. The fact that she has been able to stay within her senior community is a big plus. My next task is to secure continued funding , which I start next week, as she will run out of money within next 6 months. The facility has agreed to accept retroactive waiver funding once she is approved for Medicaid and/ or VA aide and attendance . She was one of their first residents, and they have been very accomodating and kind so I know she will be well cared for.

(12)

Thank you...all the angels on here have helped me in those dark moments of uncertainty...we all need each other, because this is so hard. God bless.

Helpful Answer (11)

You were correct above when you said your mom is grieving. When they are in the last place they most likely will live, it's a reality check--- for her and you. The final stage is here, and from her perspective, life flew by in a flash. And here she is. It takes awhile for someone to go from grieving to acceptance. By all means, take care of yourself emotionally first. But, please be patient with her processing time frame on this. It took my Mom 18 months to find joy after moving from her 3200 sqft home, living independently and driving to a 1,000 ft home and no car. In hindsight, she was truly in mourning.

(1)

(((((hugs)))) You have made the right decisions for your mum. She needs help amd she will get the care she needs in her new setting. I am sure you are exhausted now. Please give yourself some time to recover. If I were you I would limit contact with your brother. He isn't helping anyone, My sis was like that - only criticized but never helped. I finally cut contact with her. It was the best thing I did for myself. Time to look after you now,

Helpful Answer (10)

It doesn't MATTER what kind of dementia she has. There is no cure for any of them. So set that one aside.
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.

Helpful Answer (10)

I don't think I could add anything to your beautifully worded response, AlvaDeer. "Grief" is exactly the right word to express what we are feeling with these drastic life changes and the worry about not being able to fix things. Well-worded, and right on the money!

(3)

Though you are tired, I hope you have peace of mind knowing you have done the best you can for your mother's comfort and care. Sleep well. You did good.

Helpful Answer (8)

She's not happy...and it's been one day.

Give it time. Everything usually shakes itself out, and there's no rush to make the world perfect.

Tonight, just breathe.

Helpful Answer (8)

Please don’t feel sad for her! She’s in a place where she’ll have the care she needs. You need to rest and relax, which means not worrying what dementia she has. It makes no difference. Neither does what stage she’s in. Deal with making sure she gets what she needs, and you’ve already done a fine job of that.

Helpful Answer (8)

These are all such great responses. My mother was never tested for dementia; she probably had mid-level cognitive decline, probably not advanced to a dementia diagnosis when I moved her to an AL at age 100. Maybe mild dementia when she died at 102. But after four years of living with her, I couldn't do it any more. She had a fall with broken arm; I had to do everything for her for six weeks. She recovered, but she wasn't going to get younger. A year later, she told the hospice nurse she hadn't wanted to move, but now she knows it was the right thing. And we had 18 months to heal our relationship, when I could just be her daughter again. (Unlike your brother), you are not abandoning her. You will just have a different role. All will be well, you will both adjust. And when the elderly choose to "age in place" (and the children honor that at great emotional and physical expense), they also choose loneliness. Maybe she will make friends, and engage in activities. Sending hugs.

Helpful Answer (8)

Thank you for your feedback! So happy to hear you were able to repair your relationship with your mom. It's funny how a virtual hug can bring relief. Right back at ya kiddo!

(0)

You absolutely did the right thing. She is blessed to have you. Don’t waste any more time worrying about your brother, you can only control you. Hang in there and sleep well. Mom is safe and being taken care of.

Helpful Answer (8)

Thank you for your feedback! My brother has come around and is contributing on an emotional level and allowing me much needed respite.

(0)

I am so grateful to this site, I feel like I wrote the original letter. I moved my Mom in today to a Memory Care Facility and came home and cried. I am both physically and emotionally exhausted. I know I did the right thing, but it still hurt. When I left she cried and I felt so bad. She begged me to please come back tomorrow. I have a very helpful husband, brother and son. My older sister also said she wasn't going to help. I will never ever understand that, even if y'all tried to explain it, I still wouldn't get it. Thank you to all of you experienced people, it truly helps to know you are not alone!

Helpful Answer (8)