Mom is 85, has lived in her home for almost 55 years, and has always been very independent. Last year she was hospitalized with a pulmonary embolism and also treated for a detached retina. Now, she is generally in good physical health, but suffers from dementia -- long term memory is great but short term is getting progressively worse and occasionally suffers panic attacks.
I'm her single son and have been her primary caregiver for almost two years -- managing her finances, making sure she has and takes her medications, doing yard work, grocery shopping, bringing meals, taking her to doctor appointments, etc. (all the stuff caregivers are familiar with). I’m so burnt out emotionally, mentally, and physically that I don’t know how much longer I can keep this up. My older (divorced) brother helps out some, but I feel like it is all on me.
We brought up the idea of moving her to assisted living late last year, but she wanted NO PART OF IT, so we dropped it. She also does not want any outside caregivers coming into her house to assist her. Nevertheless, I knew the day would eventually come when she would need help, so I did a lot of planning over the past year in preparation for this event including evaluating different assisted living facilities, putting her name on a waiting list, getting her finances and estate planning in order (including Living Will, DPOA), etc, so we would be ready when the time came.
This past summer after a panic attack SHE brought up moving into assisted living and wanted us to make the move before winter arrived. She said she would not fight us on this issue and if she protested, we should ignore her and continue with the move. This was a HUGE day for all of us!!!
Over the past few weeks she would ask when she was moving into her new apartment and I would show her on a calendar. On moving day, she was ready and willing to go. She has been in her new apartment for less than a week and every time we visit, her first question is always “when am I going home?” She gets so very angry with us and so worked up that we have to get assistance to calm her down. She cannot take care of herself at home and we can no longer provide the care she needs (even though she does not think she needs any care).
My brother has taken a more active role in her care now that she is in assisted living, but I still feel emotionally, mentally, and physically spent. I’m not sure if or when mom will accept her new living arrangements or where I can turn to for support/help for her or me.
Any assistance is greatly appreciated -- thanks in advance!!!
It is hard to blame your dad for running out when there is someone else to be with Mom!
I hope that you and your brother ALWAYS push the button when you are there and Mom needs help. Even if it is something simple that you could do, get her used to having the staff help her.
The staff is probably right that visiting less frequently would be good. Even if it doesn't help your parents (I think it will) it should help you!
Can both parents go out to activities? If they don't enjoy the same things, could Dad go the daily news discussion and Mom go to Bingo and they go together to the live music show? This is the kind of thing the staff may be able to encourage if your parents know you are not coming that day.
It sounds cruel to say visit less, but that really may be a kindness. Try it!
I do feel sorry for your dad. I wonder if someone on the staff could persuade him that they could get into trouble with their insurance by letting an untrained resident help another resident Sometimes an excuse like that empowers them to say no. "I would help you, dear, but I'll get in trouble because of insurance rules. I'll press the button."
Talk with the Medical Director or Social Worker about other suggestions.
And remember, Dad may buy the tickets but you don't have to take that guilt trip!
One thing we did with my Mom that helped was to take things FROM the home into her new room. To try to make it feel more familiar. Family photos. Maybe even a piece of furniture if they'll allow you. And my Mom's spouse visited her every day, took her out for walks, to eat, to the park.
I hope this helps you in some way, and I wish you, your Mom, and your brother much love.
Once your mother starts to make friends and gets into a routine with them and the activities, she will be better. Change is hard and she needs time to adjust.
In our case, Mom complained to us constantly, but it was just a habit and trying to "guilt us". In fact, the staff told me she had a good time, had friends, etc. It was an act she put on for the family. When she saw us, we reminded her of the past and wanted it back. But, in fact, when we weren't there she was fine - just like leaving a toddler at daycare - they stop crying the minutes you leave.
There were times I took Mom to lunch and when we went inside, she saw a friend and promptly walked off and left me standing there. Or I tell her I was coming for lunch, only to get there and see she was already in the snack bar eating with friends. She would hustle me out the door if it got close to the Friday cocktail hour or monthly birthday party.
I moved my 91-year old mother from California into Assisted Living here in Texas a couple of weeks ago. For the last year I've had caregivers come into her apartment, and that was okay at first, but eventually, she wasn't eating her Meals on Wheels, not showering or changing her clothes, not taking her meds on time... and after a couple of falls and trips to the ER, it became clear to me that she couldn't live on her own any more. We talked about her moving to Texas, where she hasn't lived since 1974, and she agreed, but, as everyone has said, now that she's here and realized the move was permanent, I'm the villain.
According to her, I conspired with my father (who has been dead for 30 years) to abandon her here so he could run off with another woman, namely, her sister (who's been dead for four years). I knew and know that this was a huge move for her and a huge change, and I told her yesterday on the phone that if she wanted to be mad at me, I would understand, but I did what was best for her and I was sticking to it. Then I hung up the phone and cried.
What AmyGrace said describes my mother perfectly (Amy, are you sure we weren't separated at birth??):
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"My mom is bored too. She has NEVER had any interests except family, no hobbies, no reading, won't do puzzle, is socially inept and even in IL, which had lots of trips and activities, she didn't join in. She is bored with her own company and she is boring, has nothing to talk about because she does nothing, not interested in anything. Now with dementia, its worse but we have tried everything to get her interested and involved, so has the AL. You can't change a person, all you can do is refuse to take the blame for their unhappiness when there is nothing more you can do. Yes, it makes us sad to see Mom unhappy, and Zoloft helped (a little) but the bottom line is, she HAS to be in AL for her own safety, with professionals to be there 24/7."
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I know I just need to stick it out and taper off my visits. I need to give her room to assert her independence and not take her comments personally. She has mild dementia and doesn't remember things. Reading y'all's comments has helped me tremendously today!
I guess all us children can take from this experience is that when we age, even if we have dementia, we should try to adjust, accept and make an effort to create a life and happiness when we have to move to AL!
I'm so sorry for the loss of your mom. In my case, even making her 30 again would not make her happy. She has been sad and depressed her whole (and my whole) life. I believe she was sexually abused as a very young girl and of course, back then, there was no help or recourse. She came from a big-- 10 children-- immigrant family (eastern Europe). She always felt insecure and inferior to others, and that's still true. If she were a little kid in school today, there would be all kinds of help and programs and special attention. But sometimes she reminds me of a little kitten left out in the rain, meowing for comfort but finding none. (Maybe that's why once I left home, I started taking in strays...)
Your comments have helped me enormously. Thank you so much.
I think I'll give myself permission not to go see her today.
Now if she calls me because she's hallucinating, I know that at least she's safe and I can visit/check on her frequently. When she was still living in her co-op apartment in NYC, she would leave her apartment in the middle of the night because she was afraid of the hallucinations she was seeing! I am so thankful that her neighbors were very good people and nothing tragic happened to her.
I my mother's case, she says that there are millions of tiny bugs--she calls them "critters"--crawling on the top of her breasts. She says they're no bigger than the head of a pin and she can see them all moving as one mass all over her skin. Somehow or other, this is connected to some kind of melon she saw a few months ago. To hear her tell it, a man cut open a melon and it was full of millions of teeny-tiny critters all milling and swarming around and somehow these critters are now all over her breasts.
I can't make hide nor hair of it. I've looked at her skin--so have lots of other people--and there's nothing crawling around. She did have a fungal infection under her breasts ("athlete's boob"?) but now that is cleared up. Today she told one of the aides about the critters and the aide passed the info on to the nurse practitioner. I told the aide that it was hallucination, so we'll see what come of it.
A few months ago when she was still in California, I called her and she told me her mother and father were sitting on the sofa in her apartment and she was visiting with them. Both have been dead for decades. I didn't contradict her or give her a hard time, but I did call a neighbor and ask her to go over and check on her.
Can you share some of your mom's hallucination experiences?
My mother too eventually accepted to move.. I have 3 brothers and I feel it is all me. I have one brother that went through this alzheimer's mother-in-law that offers a little insight. Once in AL: Yeah, there is a lot of yelling and screaming... A lot of arguments you can't win, even though all your answers are right. Most of the time it just makes it worse. In a lull, I try to mention something pleasant to redirect them, but, my mom is a little too smart. But, sometimes there is a bubble of pleasantry and even a hug on leaving... so hang tough. But, there are times when you have to walk away,
There are alz support grps.. guilt? Yeah there's lots of that, especially if you sell their stuff, car, and house. (if you don't, it drowns your finances) Also, you can't let them take over your life. My mother calls 7,8, 9 times a night just to rant, and yell. Sometimes you have to ignore the phone calls, trust me they won't remember doing anything the night before. Just remember, she is in a safe place and being fed. The mental aspect is secondary. My mother is now in Memory Center assisted living after an elopement incident (locked out in the middle of the night in a daze) (it becomes a legal issue 24/7 supv mandatory). But, at this level, they take care of everything, its secure, so lots of coded doors. Pretty life changing.
My mother wasn't in the same condition as yours, but even she wasn't convinced that she needed more care. She would wear the same clothes for days, not bathe, stuff her Meals on Wheels in the freezer instead of eating them, Eventually MoW called me and said they couldn't deliver any more because there was no more room in the freezer. But in my mother's mind everything was fine and when I moved her, at first she accused me of tricking her so I could abandon her.
When you're trying to take care of her and trying to do the right thing and she's fighting you, it's very hard. You say you feel guilty for not getting her into a residence sooner, but I'm guessing you couldn't have done it any sooner.
I'm an only child, so there weren't any siblings to leave me high and dry, but I'd be really pissed off at my family for making me go through this all alone. I'm hoping you are taking care of yourself now. It's going to take you a while to recover from this ordeal. I agree that your mom is in a better place and she's not suffering anymore... but you are still suffering the aftereffects of years of stress. I hope you can find some counseling... just someone to listen and help you heal from all you've been through.