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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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As I read your story, it came to me that all you are doing has changed the definition of 'daughter' - a daughter is born & as A BABY & CHILD NEEDS TO BE CARED FOR BY MOM - but you have now become the care giver so in her mind as the carer you are not a daughter that needs care

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
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When my dad no longer knew who I was, I kept telling myself that he doesn’t know who I am, but I know who he is to me, so that’s why I’m here caring for him.He thought I was a catcher for the Chicago Cubs. That’s what matters as long as the situation is not dangerous. A friend’s FIL thought he was back in Vietnam and thought his grandson was the Vietcong. He had to go to a nursing home ASAP. You are doing a wonderful selfless job taking care of her.
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Hugs Sweet lady!
You will see each other as mom & daughter again in a happier place❤️
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My 96 yr old DH had also started resisting bathing - so I used Adult Wipes (like diaper wipes but bigger!) and a Foaming Cleanser that needed no rinsing (Aloe Vesta).

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.
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terrie, watch some Teepa Snow videos, too, they may provide some good smiles and comfort. caregiver, I can’t imagine that... that sounds so hard. Putting another set of hugs here for all of you. ((( )))
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since she no longer acknowledges you as a daughter, maybe it's time to think nursing home? It's only going to get worse and you need to live your life.
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Unless you have been on this horrible journey one cannot understand the depth of the pain we go thru. It is unlike any other feeling I have had in my life. Hugs to you and everyone who is in our position.
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If you can find a support group go. It's wonderful free therapy & everyone there is in the same boat so understand & you can laugh together. This texting group was the first of my help. My husband doesn't know I'm his wife but knows he's secure w me. Alzheimers Reading Room is really good w ideas too. Stay calm & love them. They are like little children wanting love & security.
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I did go through a period of two years when she occasionally saw me as her servant and told me that she would inform her father not to tip me. Oddly enough, later when she was in a high-level care facility associated with an Assisted Living home, I was able to bring my Mom back to herself by providing her with a written history which she read daily for several years. In the very end, when she was not eating enough, and bed-ridden, and wanting to do nothing more than sleep, I put on some old tapes that the facility had, Lawrence Welk, and some patriotic, music-filled videos of America. We sang "America the Beautiful" together, and the very last song we sang was "Take Me Out to the Ballgame." Music memory seems to be the last to go. This reminds me, that to teach my grandson the importance of brushing his teeth, I used a song sung by Raffi: youtube.com/watch?v=3dup3IArSNs WORKED! (I also adapted the chorus from one of Raffi's songs to encourage my Grandson's potty training. Use your imagination: youtube.com/watch?v=yCkQxaP3mME.) I also sang a few ditties to my Mom while coaxing her to eat, to get out of bed, etc. Charm worked more often than reason. It is very difficult. Whatever I did, it didn't seem that I did enough, even though I was exhausted everyday. Now she is gone, and I think about the few times that I failed because I was so exhausted. I have learned that I am human, and know that my Mother would have been happy with all my efforts, had she been herself. Sometimes she was herself and was lovely and loving, and appreciative. Life is like that. That is the way it is, and that is what we must accept and make peace with.
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Thank you all for your support.
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.
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MY dad thought I went to school with him.. a lot! I would remind him I was his daughter.. but normally he would just forget. ( maybe I looked like Mom did then) As for the hair cut ( easiest fix I can come up with) could YOU trim her hair? It's not hard,,she dosent need to look like a supermodel, just tidy.
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I think if you ask her doctor, Medicare will allow therapy in the home. That will give you some time to yourself.
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My mom has reverted back to when she was a kid ..she thinks she lives back in the 1940’s and thinks her brother is still 7 and her older brothers and Mom and dad are alive ..she knows me as her daughter but dosent get the connection..she can be mean ,,but I overlook it because it’s not her ,,, I just play along with whatever she says ...she loves Disney junior puppy dog pals and vamperina and the other Disney shows ..she sings along to the songs at the beginning of each show ..she said when are we moving to Gravity falls .lol.it was so funny 😂...she is just reverting back to a baby I think she acts like a 2 year old ...she does get mean and name calling but that’s ok I just overlook it ,,,I take care of her myself and my dad since my sister died suddenly almost 5 years ago and I work full time as a RN Supervisor at a hospital... love to you all and thank you for this post ,
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I am tearing up that has to be the hardest thing to here and unfortunately it’s part of the disease and she isn’t doing it intentionally but that’s so hard to differentiate between the two hugs stay strong
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My 91yo mother w dementia yelled at me to get out of her house as she don’t know who I am. I told her I am your daughter! She responded her daughter is beautiful & I’m ugly & her daughter died 3 years ago. I’m her only daughter. I refuse to address her as “mom” anymore. To me she is Evil Eve
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I feel your pain. My biggest challenge is to realize she isn't going to do all of the things I tell her to do and I have to get creative to help protect her from herself. My biggest wake up call is when she was driving the wrong way against 3 lanes of traffic and had my sister and I in the car. She would not stop the car even after we told her many times. I finally said "You are scaring the other drivers." In her mind she had to get on the shoulder of the road, drive past the group of cars to turn around. That is when I realized she was not safe on the road anymore. We didn't hit anyone but it wasn't a good feeling when she wouldn't stop the car.
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I echo everyone else’s experiences. I had more life roles in my mother’s Demented mind than I ever had in real life. I was her co-star on the Broadway stage. I also appeared as her co-star in television ads with her. Always the co-star, never the star! LOL. When she was aware of who I was, she was accusatory and negative about everything. Or, she was “poor little girl lost”

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?
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Terrie,
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.
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Terrie I'm tearing up for you; I can't imagine how hard it would be to listen to those words coming from your mom. You're right, I don't think there is anyway to prepare for the things Dementia speaks through a loved one.

-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.
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