Viscious Cycle

Daisie

I'm tired. I'm exhausted. My mom, with moderate MD, is a handful.

I don't know what's an MD symptom anymore or not. My mom has 40% bilateral hearing loss (probably much worse, actually) and cataracts in both eyes. Yet, she will argue with me and the doctors about how she "knows" she doesn't and has never had hearing or vision problems. She will fight it tooth and nail. Got so bad at the ENT that he finally told her, "Look, my job is not to convince you of something, only diagnose what you asked me to. The rest is on you to believe it or not," and he left the room. Granted, bad bedside manner, but I couldn't blame him.

When we were at the eye doctor's office, even though she couldn't see what was projected on the wall at all, she argued it was just her allergies and would go away. The eye doctor had a better bedside manner but basically threw his hands up, too. When her PCP or I tell her about her cataracts or hearing loss, she vehemently denies having them up, saying it's me who mumbles or that it's her allergies or thyroid.

She won't use a cane or walker even though she's been in the ER probably 7 times over the last few years due to serious falls; the last one was about a month ago when she got a black eye. I really don't want her going into grocery stores with me because she's already fallen in there twice and, of course, blamed it on the floor itself. Yet, as much as the PT, her PCP, and I beg her to use a cane, at least, she won't. She said it gets in the way of walking.

She constantly gets mad at me for being tired, yet she doesn't realize that she's the reason I'm exhausted. She argues with me constantly about how I shouldn't do this or that, that she can do it, yet she can't. She can't do laundry in our laundry room anymore because she's already fallen in there, she can't drive, she can't shop, she can't cook, she's stopped doing the dishes, nothing. I know it has to do with the dementia anosognosia she's experiencing, but it never gives me a moment of rest. It's gotten so I can't act too tired or anything around her because if I do, she lays into me. If she sees me dozing, she lectures me for causing my own problems.

I can't tell her SHE'S the reason I'm exhausted and need a break, obviously. I get that. But it's so hard living with the anosognosia…I think that's almost the hardest part. If I just sat back and took a break, NOTHING would get done, but she'd TELL everyone how much she does around the house. She already thinks she does more than half of the things I really do!

So frustrated. I'm wondering if any of you experience anything similar and how you cope.

Thank you for listening/reading my venting! I had to get it all out!

Quilting brings calm

Is there a financial reason you cannot place her in an AL or MC? Do you have medical or financial POA? I would consider placement if I were you.

FYI- I told my Mom I would not take her anywhere any more unless she used her rollator walker. When she used her cane, she needed my support. I had had two vertebrae compressed fractures, I had osteoporosis I could not take the chance of her falling and taking me with her or jerking my back. She didn’t like it but I was firm. She was and still is living in an AL. Where she was already using the walker / but she wanted to just take her cane when she left the building.

So you tell her she’s not leaving the house with you or getting out of the car anywhere without a cane - preferably a walker.

SusanB-dil

She sounds exactly like my MIL. "I will NOT use that cane!" We have heard: It makes me look old, It hurts my arm, It trips me up, It is antique, I only need it when I fall. I doubt the aluminum one is antique, and even the older wooden one is built more sturdy than most you see these days. It amazes us that she can even come up with some of these excuses.

"I do NOT have a hearing problem and YOU can't make me wear hearing aids, because I don't need them!" and yet she cranks the tv, even when DH has a migraine. When he does have a headache, he will turn it down and tell her she needs hearing aids. She gives him a dirty look.

MIL's sister helps us for a few hours on Saturday late afternoons. That's when we have to do her wash or she has a fit over that. But she has told her sis she doesn't know why we mentioned the wash, because she does it every monday. Yes, but that was over 2.5 years ago! When her sis was ill and couldn't have her, we still had to do her wash. She was watching tv, so we just slipped into her room, got the laundry and had to go through the room she was sitting to get to the washer. She got up and yanked her sheets out of my hand and screamed at me that she doesn't want me touching her stuff!!! DH is the one that can usually calm her down, so he stepped in and gently told her that was one thing she didn't have to worry about right now and would she like a sandwich because it was about lunchtime…

So - yes - we hear you!

I HATE 'this'!!

mabelgirl

read up on Anosognosia and maybe some of your frustration will ease. I found a very good article that discussed this condition in non dementia patients on how their self image did not get updated in the brain. It even discussed a stroke patient whose left side was totally paralyzed but he insisted he was using his limbs! I know it is not practical help but for me having a clear understanding of why my mom insists she has no memory issues helps me keep a tad bit compassion going. Unfortunately unlike other condition that can actually get treatment dementia since it is brain degenerative can not.
Prayers for your strength and patience.

Daisie

https://alzconnected.org/discussion/comment/216351#Comment_216351

Thank you! I definitely will! Peace!

H1235

The anosognosia is the worst part of dementia by far for us! Mom is in AL and tells me she got her arm stuck while making her bed. Staff at AL will change the sheets and she is paying a small fortune to live there and have those things done for her, but she can do it herself. Mom would actually swing her cane around like she was putting on a show, just to prove she didn’t need it. Thankfully she got hearing aids before dementia so that has not been an issue. Her memory is really not too bad, but that is the one symptom she knows for dementia. Since she doesn’t have looping/repeating conversations like others at AL she doesn’t belong there. But before moving to AL she thought she was perfectly capable of mowing her own lawn(she had had multiple falls). I have just come to accept that anything I buy for her or even do for her is going to be wrong. I just do a lot of apologizing. It’s hard being wrong all the time. And this is with her in AL. I can’t even imagine her living with me, no way! For your own sanity I would consider AL. At least look into your options. It’s too bad there is such a negative stigma around AL. I’m sure there was no great words of wisdom here, but know you are not alone.

terei

Your mother is getting 24/7 care from one person…YOU. I think at some point you are going to have to realize that no one is capable of sustaining this kind of pressure + stress without burnout and probable health consequences.You sound like you are at the end of your rope. Trying to convince her of anything is a losing proposition + I urge you to do two things: one, learn how to respond to her not by explaining…she cannot and will not be able to change her reactions. To avoid conflict you are going to have to learn what type of approach works best with her which will probably include agreeing with her + then doing what you know is best. two: begin a plan to get her into a facility that has more than one person who have the energy to respond to her needs + you can go back to being a daughter instead of a more than full time caregiver.

If finances do no allow you to place her, then getting help through Medicaid in your state is your next move. About 30% of caregivers die before their LO…please dont be included in that statistic

Aroff

https://alzconnected.org/discussion/comment/216355#Comment_216355

Thank you for your comment. I'm having a hard time with my mom. Her neurologist is taking away her driver's license. Mom doesn't quite understand this and thinks I am going to steal her car and I am no longer her daughter. Oh new one is being written out of the will. It's so hard to care for someone when they treat you like you are dirt. It's difficult not to be impatient with her but I know this isn't "her." Recently I have been separating myself as much as possible. She lives in independent living but I feel she will need to move to assisted fairly soon. She is refusing any care she is offered to stay in her apt. UGH!