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
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.
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
Try to take this as a badge of courage & a sign that she accepts your role as carer - if you take it that way it will be easier on your spirit -
You sound like you're doing lots for her so use her first name knowing that she looks at you possibly as her mother substitute which in a way you are now - I sometimes use the full of mom's name as she shortened it about 12 years old & it seems to calm her as that was still living with mom & dad & big brother = warm fuzzy time
You will see each other as mom & daughter again in a happier place❤️
He grew up during the depression and they wore the same clothes for a week as there was no electricity and all laundry had to be boiled clean. A lot of work for a woman with 11 children and a husband, on a working farm.
You must learn to pick your battles. Humans do not need to bathe daily - I'm not sure when that started, but back in the depression they bathed once a week, again, water had to be boiled and they used a metal tub to bathe. I would think that the main area that needs cleaning is the privates, for obvious reasons. The Aloe Vesta even cleans the hair, it is a no-rinse shampoo with instructions on the bottle. We got our first bottle during one of DH's hospital stays.
My DH came up with the bright idea that I could cut his hair and he could save the $$ - so I bought the clippers and just did the best I could. Lots of information on YouTube about cutting hair. This past year I had to learn how to shave him too, he could no longer stand long enough to shave. It was either shave him or pick him up from the floor when he fell.
6 months ago, he no longer knew me as his wife and didn't have a clue whose house we were in. Iodoral (iodine) helped and within days he knew me most of the time as well as recognizing the pictures on the wall as his children. PM me if you want to know about the iodine.
Caregiving isn't for the feint of heart. But the rewards more than outweigh the difficulties.
We truly are warrior-caregivers.
I knew this would be something I'd have to deal with eventually.
She's generally very pleasant and compliant. She asked me nicely to call her JoAnn instead of mom. She says she likes her name. I don't press the daughter issue, it's really neither here nor there. I'm here with her and I give her the very best care possible.
This will get harder, but I began this part of the journey without many expectations, just an awareness the she is changing and I will deal with each situation as it comes.
Blessings to you all.
We are warriors protecting our LOs and do what we need to to battle this ugly illness.
The “lucky” ones amongst us don’t try to rationalize our loved one’s behaviors and what they say. It takes a while to get there and we get lots of posts from people who are devastated because they don’t understand why their loved ones “hate” them.
It is devastating. It’s unfair. Beyond stressful. Scary. Exhausting. Etc., etc.,etc. All we can do is put one foot in front of the other and carry on as best we can, right?
I think that was one of the hardest things to accept during my mom's dementia, when she didn't recognize me as her daughter anymore.
Not only that, but she told me she doesn't like her daughter, that "she" stole all her medicine and then went to live in South America and what a nasty woman "she"is. Oh Lord!
At one point she thought I was her sister. I played along because she seemed to "like" her sister.
Now, at this point, she's not sure who I am but she recognizes my face. She's always happy to see me. Unlike my childhood, she now tells me how pretty I look or how nice I am.
(But I sure wasn't very nice when I had to put her in a Memory Care facility-she attacked me.)
Dementia (regardless of the type) is a horrible disease that slowly takes the minds of our loved ones.
My mother can no longer read (her passion), watch TV, do any tactile hobby (sewing, puzzles, etc). She remembers nothing of her life, family and experiences. She just sits, eats, pottys and sleeps. Many times she asks to die. I would too if I was trapped in a body where my brain had stopped working.
I'm sorry for all of us and our loved ones.
-hugs- I know I can't help you beyond commenting, but know that I hear you! Post here whenever you need to get something off your chest.