Follow
Share

I placed my difficult mother (Alzheimer's) in memory care 2 months ago. She was falling and the hospital wouldn't discharge her to home. She had care 7 days a week but really needed 24 hours which was unaffordable. I kept her in her home with her third husband for as long as possible (too long) so she would have her beloved, familiar surroundings. Up to about six months ago, she had been sundowning, escaping the house, trying to go 'home,' angry, irrational, though more recently she had progressed to sleeping all day, medicated due to resistance to bathing and being changed, but still resistant.


In the facility she is now sitting slumped over with a table in front of her because she keeps trying to stand up and then falls. She has zero ability to engage in any of the activities that some other memory care patients engage in. She did seem happy in a recliner listening to music at the start, but now she seems to have deteriorated. She is still on medication due to resistance, though I had the amount reduced since she was dazed.


I have once again developed insomnia (which I am prone to, under stress) over my grief at seeing my mother not in her home. I cry and feel my feelings, but I'm still waking up and rehashing and grieving and losing sleep which is debilitating. I'm not interesting in advice on sleep meds, am just venting in hopes of some relief.


My father - impaired decision-making after a couple of strokes, alcoholic, narcissistic but still independent and increasingly demanding - died a year and a half ago and I got over the main grief after about 6 months. His behavior caused me to not see him for awhile before his death, for self-preservation. Settling his affairs has been long-term exhausting because he was a hoarder and left his estate in a complicated, awful mess. Now I have to face Mom's final descent.


This sleeplessness over my mother's situation is no doubt just a more profound level of the anticipatory/ambivalent grief I've been experiencing for 20 years since she began losing her mind at around 70. She initially became terribly nasty and more controlling than she always was, making crazy decisions, a lot of insanity. At one point she disinherited me, though she rescinded it. I was living in her in-law unit with my very young children/babies and husband at the time, and she was in an irrational rage at us off and on. Eventually she drove us out (yay!) and I was so traumatized I would begin shaking if I saw her handwriting. I did not understand until later that her personality changes were due to the beginning of dementia - it seemed a continuation of the anger and control issues she exhibited much of her life. She had not dealt with her childhood trauma and took her pain out on her intimates while 'keeping up appearances,' even though her neighbors got a taste of her behavior - she didn't fool everyone.


At the same time, before her dementia we had a deep love connection. I am her only child. She was always high-handed with others, was successful and attractive, very self-centered, but supportive of me. She used to say "just shoot me if I get like that" - re: old age/dementia, which of course, is not a plan. I am pretty sure I was/am enmeshed with her emotionally, at the very least it is complicated mother-daughter stuff.


Bottom line, she is now living out the worst nightmare she could ever imagine, a locked ward where she is dual incontinent, and handled by strangers. It's tearing me up to see her like this, I hate going to visit her because it triggers a fresh bout of insomnia each time, then I feel terrible guilt, for taking time off from going to see her, and then have insomnia trying to 'figure out' a strategy.


I know I can't save her from her fate, but it's obvious the caregivers in this place aren't doing much for her, but there's not much she can DO. At least she's clean and gets changed. My husband says from experience with his own parents that this is the way it is and moving her won't help.

Find Care & Housing
I hear you. I can only go visit my mom once every other week now at her care facility. I keep thinking that one day it won’t break my heart, but that day never comes. Last night I was up all night, because a friend of the family visited and said she was agitated and punched her. In moments like this I try to breathe out and think of off the people in the world, like me, like you, experiencing this long term grief (ten years for me now), and I wish us grace and peace as we make our way through this strange and horrible situation. You are not alone.
(0)
Report

Consider writing down your thoughts and feelings in a notebook each night, then putting it and the thoughts away for the night. It's a good way to offload those stressful issues and park them somewhere other than in your head.

I started writing down EVERYTHING in a spiral school notebook when my dad first got sick, because I just couldn't process the fact that he went from healthy to receiving a death sentence of terminal cancer at a doctor's visit. I needed to be present for him and my mom with dementia and handle their daily needs and all of dad's medical needs as well, and I have a lousy memory for names of medications and doctors and the like. I didn't do it for mental health reasons but rather to just keep all the details straight, but it really helped keep me from cracking up, too because I didn't have to worry about remembering anything -- I could just look it up.

Now, 2 1/2 years after Dad's death, I'm still writing in a notebook for my mom and all her issues. It's become more of a mental health venting journal than one to keep her medical stuff straight, because she's just declining a little bit day by day and is on hospice. There's not much to do for her now but wait.

Hospice took a HUGE weight off my shoulders, too, because the focus of my mother's life became quality, not quantity, and I don't have to stress out so much as to whether she's getting this medication or that one. Now she's getting only what she needs with no goal to cure anything that can't be cured anyway and is still chugging along pretty well.
(0)
Report

I hear you.

Every time I visit my mother in MC, it is like some kind of crazy mental torture session. She is suffering from anxiety and OCD that they can’t seem to control with meds. Watching her suffer is excruciating for me.

I STILL leave there and spend HOURS trying to figure out how to fix it already. I KNOW that I can’t. My heart hasn’t caught up with my head, yet, though.
(0)
Report

I too am the only child of a 94+ y/o mother with moderately advanced dementia who lives in a Memory Care ALF for the past 2 years. She's always been mean & nasty, but now she's achieved a whole new level of mean & nasty, towards me, that I've never seen before. It's hard. I hate dementia with every ounce of my being. I too am a fixer but this is something neither you nor I can 'fix'. The Memory Care ALF isn't the problem; the disease/affliction is the problem. My mother also suffers from bad neuropathy in her legs/feet which has rendered her wheelchair bound & contributed to her horrible moods; no medication can help her with the pain b/c it exacerbates her dementia to the point where she's constantly falling. She's already fallen 34x over the past 24 months in Memory Care, and 40x before that when she lived in the regular ALF part of the place. So, the whole thing is a huge mess and I suffer a lot of anxiety (but no insomnia) as a result of the interactions we have, she & I. I wake up every morning with a sense of dread & anxiety, wondering what The Phone Call of the day will be? Or what kind of mood she'll be in if we do talk. I visit her on Sundays and last week was truly a nightmare, with her mimicking me and treating me with such contempt that my DH said LET'S GO, NOW. And we did. I haven't spoken to her since, and today is Wednesday. That makes me feel 'guilty' but in reality, I'm just trying to preserve my own sanity and shaky state of mind right now.

I don't think there is any useful 'strategy' to use with these women either, b/c nothing seems to work. I feel like I've tried everything under the sun to achieve harmony with her, but I never quite make it. She won't allow it. There will be times where she's fairly civil, like when my son & his wife brought her only great grandchild over to meet her for the first time. Prior to that, she told me she didn't care if she ever got to hold him, that he wasn't her 'real' great grandson anyway, just like I am not her 'real' daughter b/c she adopted me at 3 months old. This is the level of 'mean' I'm dealing with right now, at 64 years old, and I'm tired.

I get it. I'm sorry we're both going through this and that our mothers are too. Dementia and advanced old age is nobody's friend. Nobody wins in a situation like this. I pray every day for God to come take my mother & put her out of her misery, finally, and into a state of mind where she can feel peace for probably the first time in her tortured life.

Wishing you the best of luck trying to find acceptance with such a sad and difficult situation. You're a good daughter and doing all you CAN do with what you have to work with. Bless you.
(1)
Report

My heart goes out to you❤️
(0)
Report

Thank you everyone so much for your understanding responses. I actually slept normally last night after posting on the forum, writing things down can be a powerful outlet, and now I feel 'heard' by all the comments. I have decided to only visit once a week, and see if I can manage to not get insomnia after each visit. Maybe I'll get used to the situation(? haha) It's been a 20 year 'long goodbye' for sure. I've sobbed over the loss of my mother so many times in the past, especially the first 5 or so years when she became so incomprehensibly mean for awhile, but even after that, when it was clear she had drifted away into another self. Now, seeing her slumped and 'incarcerated' is a new level of pain. I am a problem solver by nature, so of course I'm grinding at night, trying to come up with a 'solution' - and what would that be? This is how Alzheimer's ends up, the progression has been textbook, except for the nastiness - I hear some people don't get that way, though my mother did, big time. I am planning to take her to a local park soon, with the help of my husband since I can't move her from car to wheelchair on my own. The building where she is is under renovation and the garden is inaccessible at this time. It may only be a park outing for ME, but I feel like if I get her out of the memory care unit once in awhile, I'll feel less awful about her situation. I went to visit on her birthday last week and fed her some cake, played big band music for her, rubbed lavender lotion into her hands and massaged her neck and shoulders for quite awhile, which she likes, then came home and had three nights of insomnia. My husband says I'm projecting my own feelings onto her, and I suspect that is also part of the case, though of course, she doesn't look HAPPY, but who would? Awful to see. Even though she was vile to me, I made up with her later, since I didn't want her to die with us on bad terms. It was up to me to extend the olive branch, she was too crazy to do it. Anyway thank you all so much again for the support and kindness. This is indeed a difficult 'season.'
(2)
Report

I’m so sorry you and your mom are going through this. I’m in a similar situation with my mom who is in a memory unit. I struggle daily with the decision my brother and I made to place her there. At the time, it seemed like the only option. I totally understand where you’re coming from. I’ve been extremely close to my mom my whole life and I think daily that I have somehow let her down. This forum has been a Godsend. There are days I don’t think I can bare the pain, doubt and grief without reading others’ stories here. Just know that you are not alone in this and that you are doing the best you can. This is the most difficult season of life I’ve experienced. Praying for peace for all of us and our loved ones who are living this life right now.
(2)
Report

I’m so sorry for your pain and turmoil. I had four years of watching my mother in complete misery in a NH. It remains the cruelest thing I’ve ever witnessed. And the worst part for me, losing the mother I’d known and not being able to do anything to make it better. Her care was kind, compassionate, and well done, for which I was thankful. But I knew what a nightmare it was for her, and that never got easier. I can only wish you both peace and comfort
(0)
Report

I'm so sorry for your distress and insomnia - I too have experienced insomnia from time to time over the years.

The only suggestion I have is to take good care of yourself. This disease is so awful with nothing that we can do to make our LOs better.

Hope the venting helped - sometimes that is all we can do. I send you hugs.
(0)
Report

My heart breaks for you, and all you've been through. I could feel your pain through your written words. It's hard when you are grieving a person before they are actually dead. This I know.
But you must know that you have done what needed to be done for your mom and her safety, even if it's not an ideal situation. I would continue to have the memory center monitor her medications, and cut back on them if possible to make her more coherent. Often it is the medications that cause people to be more out of it than their normal. I would stay on top of that.
Other than that, you may want to limit your visits to just once a week for now, until you feel better able to handle them. You can still call and talk to her nurses more often to see how she's doing.
There are no easy answers here, and everyone handles grief differently. Please don't beat yourself up, and make sure that you are taking all the time needed to grieve the mom who is no longer there mentally, as there will come a day when you will then have to grieve the mom who isn't there physically. It's a crazy rollercoaster ride that you will be on for a while, but my prayer for you is that over time that ride will be more tolerable. God bless you.
(4)
Report

Start a Discussion
Subscribe to
Our Newsletter