I'm no longer viewed as a daughter...

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This is not really a question, but just need to talk.
My mother, who had been living with my husband and myself for 4 months insists I call her by her given name and not call her mom. She says she doesn't have a daughter. It was such a gut punch, but I knew something like that would eventually come, but I guess one can't really prepare for something like that. She still says she had a son and grandson (my son), but the logic isn't there.
She adjusted to the move quickly despite not wanting to move from her apartment and there have been numerous instances that validate my decision to bring her here. We have dealt with 2 UTIs since the move, with the first one right after she moved in that involved bleeding. The second one I recognized right away and we went to her PCP to get treated.
She resists bathing and having her clothing washed. I assist her with her bathing and got a lovely bath stool that allows her to sit on the outside of the tub and pivot into the tub thus reducing the risk of a fall. Putting a hand towel on the seat and spraying it with warm water so it's warm before she sits on it helps a lot, but it's still a struggle to get her to that point. She doesn't understand that just because she can't see dirt that she still needs to
bathe. She needs her hair cut, but refuses to allow me to take her to get it at least trimmed.
Since she's here now her nutrition and eating have improved, but she will sneak snacks and food in the night to hide in her room. Melatonin helps some with her sleep schedule, but I'm looking at baby monitors for the future.
We walk and do range of motion exercises daily to keep her mobile.
As she is progressing with the dementia I have found so much solace in reading other's accounts of their experience.
She is losing some of her language and spends more time watching cartoons since they seem to fit her ability to understand.
Thank you all for being here and for all of the support you have and currently give your loved ones and those of us struggling to do the same.
Terrie

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My Mom will be 92 next week with moderate dementia and at this moment she is doing well except for the "baby". It's a stuffed cat named Patty. At first, I was a little surprised but decided to embrace the whole situation because this is keeping her occupied and arguing about her reality doesn't work. We both get exhausted. I even bought the "baby" a cat bed for Mother's Day. She lugs it everywhere and when she called about taking the "baby" into the bathroom for fear someone would kidnap her I told her to take the "baby" and put her in the dry tub while she was in there. That worked. We put the "baby" into a cooler type bag so we can take her everywhere. She didn't want to take the cat along but once I found the solution to taking it so no one would see it she was happy. Such an odd disease, still has enough marbles to worry about what everyone thinks.

As for bathing, I use liquid Ivory soap. It makes bubbles so she can't seem to see the water but it's not bubble bath. She doesn't stay in there long but she is happy to play with the bubbles and they are helping to clean her.

We didn't have a great relationship but now that she is a nicer version of her old self, it is much easier for me. This whole situation is awful though and while I have tried to get her into AL she will not budge. Plus she won't use a walker or a cane (I don't need it as she bounces from wall to wall) and thinks that she is still independent. (Actually, she never was). It's a horrible disease but keeping a sense of humor really helps. I also make funny faces at her and she laughs and laughs like we are little kids.

I have a deposit on a lovely room at an AL and unfortunately, am just waiting for the other shoe to drop. I have a caregiver that helps out and looking at more help but she is resistant. She hates getting ready for "company" but I keep working on it slowly but surely. Originally, the caregiver was just a babysitter and I didn't have her do much except reheat what I had made for meals. Now, she is doing a little light cleaning, etc. Mom likes her most of the time.

She doesn't eat properly so I sneak as many calories in as I can. Tomato soup made with whole milk, mayo not only on the bread but between the slices of meat (just a little not globs), carrot cake cupcakes with fiber baked in, mashed potatoes with whole milk and real butter. I make the potatoes 5 lbs at a time and freeze them in small containers. Works really well and just remicrowave them. Lots of apple juice in a highball glass.

This forum has literally saved my life as I had no idea what to do when I took this job of caregiver. Sibling doesn't bother at all and in a phone convo yesterday she said "I can't seem to get it into her head..." After she was done, I knew it was best that Mom was with me. Hugs and love to all of you out there.
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You are coming to the right place for support and care, and like many others, I am sending you a BIG comforting hug!!! We are (many of us) dealing with a lot of the same situations and although they may be similar, each of us reacts to different stressors differently. My 95 year old mother with moderate dementia still knows who her close by family members are but she is so absolutely miserable with her life (she's been in AL for 3 years this August) that she seems to have to make us all feel that way when anyone visits her. I just had back surgery two weeks ago last Friday and when I went with her "stash" (gingerale, chips, muffins, instant coffee, etc. so she can have breakfast in her room and some snacks), the first thing out of her mouth was "the aides REALLY like my stuff. I'm almost out of gingerale and they didn't leave me ONE napkin!!" Ugghhhh!!!!!! I would say that the one comment I have the hardest time with from well meaning folks who know my mother is still with us at 95, the "oh, how wonderful for you! You are so very lucky to still have her" when the more appropriate comment might be, "is that a good thing?" For some, it may be, but once your loved one's quality of life has diminished as much as many of us have described, that is most often not the case. Oh....and like you, my mother doesn't give a hoot about bathing - her favorite comment is "I'm from France, and in France, you only bathe once a week at most." I would happily take that once a week as she will go months if you let her. Again, hugs to you and to everyone else here dealing with similar issues.
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Terrie, at this sad stage in life, we don’t know who our demented parent is, either. Yes, we can remember their name and their relationship to us. And our entire damm life with them. But they are a shell of that former person. It’s a bad head trip. Take care of yourself.
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Goodspirit, you put it well! Find humor in the chaos. My mom has several times thought I was my sister, which was more upsetting than when she didn't know me at all! I am so much nicer than my sister. :) And, laboroflove2, I love the poem! thank you!
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My sister and I were ever grateful that my dad remembered who we were to him. We know of other parents who could not remember their children. My aunt gossiped to her daughter about the same daughter . Luckily she could laugh it off. She cared for her mom and managed to find humor in the chaos. Take care Terrie, she doesn't mean it. If only one knew what goes on in their minds.
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This poem helps me cope:
Do Not Ask Me to Remember

Do not ask me to remember,

Don’t try to make me understand,

Let me rest and know you’re with me,

Kiss my cheek and hold my hand.

I’m confused beyond your concept,

I am sad and sick and lost.

All I know is that I need you

To be with me at all cost.

Do not lose your patience with me,

Do not scold or curse or cry.

I can’t help the way I’m acting,

Can’t be different though I try.

Just remember that I need you,

That the best of me is gone,

Please don’t fail to stand beside me,

Love me ’til my life is done.

– Owen Darnell
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Yes, I remember when my mother first didn't know who I was. But she liked me! She was glad that she met me. :) Could be a lot worse.
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I feel your pain Terrie. The first times they don’t know who you are hurt the worst. I always kept in mind that it didn’t matter because I always knew who she was. But sometimes the huge lump in your throat turns into huge warm tears pouring out. Toward the very end, I was happy to be anyone my Mom wanted me to be as long as she was calm. Usually her Mom. I don’t think she forgot about her daughter, just couldn’t grasp that I was her. Prayers for you.
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Warriors and worriers...good daughters (the ones out of town LOL) and evil daughters (the ones sneaking to wash and dry the outfit worn all the time after midnight). You have prepared me for yet another episode yet to come. My mother and I have always had a more antagonistic relationship...so there are no huge surprises, but now she has a very sharp and nasty edge. I am tired of cleaning up behind them (dad is there too, which is a good thing as he keeps semi-watch on her). Know you're not alone. I am not a support group person, but have found it helpful to go to the once monthly group sponsored by our local Alzheimer's Assn for Adult Children.
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Dementia , Alzheimer's or otherwise, is a terrible slow theft of memory and the self. You can always say, "this is the dementia talking", not my parent. However it is so very painful to watch the decline. I was a Certified Dementia Practitioner and a long term care activity director. Always found it helpful to focus on what gave the patients joy and try to be playful and happy with them. Sometimes this will not work, but wonderful when you can make them feel happy! Try Teepa Snow's approaches. Always respect that person buried inside the dementia. Yes so difficult when they are being stubborn and mean. Remember they are fighting to get back what is lost to them.
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