Toxic Weekend

Daisie

I'm new here. My mom is living with me. She's 88 and have mid/moderate dementia, hearing loss, anxiety, and depression. In turn, I am anxious and depressed. It's been particularly bad this week and weekend.

She doesn't have a social life at all, refuses to join any clubs or anything, and when asked if she'd like to move into a senior community, the answer is a resounding no. She refuses to go to behavioral therapy of any kind (so, surprise, I'm the one who's always in counseling) and is to the point where she doesn't understand why my friends and I don't invite her out with us. I rarely see them, let alone do anything by myself or have time to enjoy my own life. I also work a full-time job, have to drive my mom back and forth to appointments, do most of the household chores, and keep her on the straight and narrow. 

I was supposed to go to a fundraising event tomorrow as a volunteer and she basically laid such a trip on me this morning that I canceled - it was much easier. Any anxiety or depression I experience is always "my problem" and she won't see the situation for what it is. She just digs her heels in deeper.

I'm here to ask how much of this is common to y'all and your situations and how you cope. 

M1

Welcome to the forum Daisie.  We can all empathize, and there are lots of experienced caregivers here who will chime in.

This is an excellent place to learn about dementia behaviors and how to adapt to them--and for sure, it is you that will have to do the adapting.  Part of what will probably help is learning about loss of executive function---dementia is so much more than just memory loss.  It sounds to me like you are probably expecting too much of her, as she has likely lost the ability to socialize, and has lost the ability to "join clubs," or benefit from any therapy, or anything like that.  Or even to make any decisions about such things as "joining a senior community."  You are probably the one who is going to have to decide and make the moves, and don't expect her to agree to anything.  We learn not to ask, and not to try to reason with someone whose reasoner is broken.  Hope you have your powers of attorney in place.

Would she be left alone if you went to your volunteer event?  There may be underlying fear there of being alone that she can't verbalize.  May be time to think about sitters/companions, which will also help you maintain some normal life.  

Good luck; I'm sure others will respond.  By the way if you're not familiar with it, tam cummings' stages of dementia is also something good to be familiar with.  Someone will post a link or you may find it in other threads too, but it's easy to google.

ButterflyWings

Hi Daisie - so very sorry for your need to be here, but welcome. You are in the right place and very good company. Lots of help, support, and experience here.

The short answer is, it’s not that she won’t. She can’t. Whatever it is. That’s the answer. Cooperate with you? Understand that she is impaired? Get a grip? Envision a move or problem solve in general? 

She no longer can. And today is her best day...it is only going downhill from here. I’m so sorry if that sounds cold or callous. It truly is not— it is just our reality as dementia caregivers. Please learn about anosognosia and also how to validate and work around her disease for both your sakes. Teepa Snow and Naomi Fell have some good YouTube tutorials. Good luck to you. We get it.

* Adding a link: https://www.agingcare.com/articles/amp/210090

Daisie

Thank you, M1 and ButterflyWings! Yes, I realize it's me that has to adapt. I think realizing that her reasoning is broken is the hardest to navigate. I'm also here to learn more about dementia and hope I can learn a lot from everyone! I've joined social media forums that were full of nothing but resentment and hate. Told my doctor and she directed me here!

Daughter80

I can only imagine what you are going through. Luckily my mom wants to be social and join anything she can. I agree that you just can’t reason with her. Do you get any type of help with her?  We have companion care that comes a few times a week. There are day programs, but we never tried those out. My mom has declined so fast we are actual moving her to MC this month. I wonder if you took her to a place like that if it would be helpful for you. Maybe she would join in. Maybe not. You definitely have to care for you. You are doing so much. If you have an area for aging near you maybe contact them. We were able to get vouchers for free care. It was 14 hours of care about every three months. Every little bit helps.

harshedbuzz

Daisie wrote:

I'm new here. My mom is living with me. She's 88 and have mid/moderate dementia, hearing loss, anxiety, and depression. In turn, I am anxious and depressed. It's been particularly bad this week and weekend.

Hi Daisie and welcome to the place none of us want to be. 

She doesn't have a social life at all, refuses to join any clubs or anything,

This is sad. Unfortunately, this is not an uncommon situation for older seniors. I moved mom back to the area in which she raised me when my dad was diagnosed with dementia. She does not have dementia, but it has been very difficult for her to replace the social life she had in FL and MD before the move. I have tried mightily to get her engaged at her community's club house's many activities without much success. She can't get there on her own reliably (she no longer drives and it's a .75 mile walk partly uphill on the return). I'm kind of it; her real friends are at a distance or too frail to offer more companionship beyond phone check-ins. Her only sibling and pair of nieces are 300 miles away. 

It is even harder for a PWD to socialize in the mainstream as many other club members or potential social contacts are not interested in interacting with someone who has had a cognitive shift and can not keep up conversationally or during games or activities. 

and when asked if she'd like to move into a senior community, the answer is a resounding no.

Once a PWD reaches mid-stages, it's likely too late to try reason to lead them to decisions that would lead to a better life. Either you make it happen without their input or you don't make it happen. That said, at 88 breaking into a traditional 55+ community would be hard at 88; IME she would be mostly invisible to the newcomers who will be closer to 65-70 and the more established social groups who might be older. She might do better in a MCF if she's progressed to the middle stages or attending a day program with dementia-informed activities and scaffolding to be successful. 

 She refuses to go to behavioral therapy of any kind (so, surprise, I'm the one who's always in counseling)

If she's in the midstages of dementia, she's past being able to benefit from therapy. She likely doesn't have the short term memory to learn to reframe her thoughts and behavior. She may have anosognosia and is unable to sense that she has had a cognitive shift of any kind. And her executive function skills would be too impaired to recognize when she needs to reframe a situation and try new strategies that she's long forgotten.

and is to the point where she doesn't understand why my friends and I don't invite her out with us.

This is probably a function of anosognosia. Perhaps her orientation to time is impaired and she sees herself as younger and more of a peers than mom to you.

I rarely see them, let alone do anything by myself or have time to enjoy my own life. I also work a full-time job, have to drive my mom back and forth to appointments, do most of the household chores, and keep her on the straight and narrow. 

It's a lot. I get it. 

I was supposed to go to a fundraising event tomorrow as a volunteer and she basically laid such a trip on me this morning that I canceled - it was much easier. Any anxiety or depression I experience is always "my problem" and she won't see the situation for what it is. She just digs her heels in deeper.

She can't see it. Her brain is broken. 

I'm here to ask how much of this is common to y'all and your situations and how you cope. 

It's very common and one of those ways in which the early-midstages are tougher in some respects than what is to come later. 

I found this short piece helped me reframe how I looked at the situation with my dad.

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

Heaps of empathy help me stay on an even keel with my mom. While I am fortunate that my mom doesn't have dementia, I still have a feeling of tremendous responsibility as an only helping her remain as independent and thriving. It's a lot but I get through one day at a time which the realization that nothing is forever. 

Daisie

Thank you, too, harshedbuzz! Great insight! I started reading Thoughtful Dementia Care: Understanding the Dementia Experience and it has been soooo helpful! I'm starting to "get it." So glad I joined this forum and am appreciative of the kind and considerate feedback I've received. Much more practical and constructive than those groups I've tried on social media. Can't say thank you enough!