Quick Recap: Last year I became "in charge" of my Mom when my step-dad passed away. She has moderate dementia and can't be left alone. About a year ago, I moved her successfully into a Memory Care Home, about 5 minutes up the road. She settled in, and had a good three to four month run from mid-January to just recently.
Two weeks ago, her brother, whom she hadn't seen in 12 years, was brought to town by my cousin for a visit. He has Alzheimer's, but it was still a sweet reunion. Totally NOT in Mom's normal routine or schedule. Then the following week her personal trainer was out of town, so two BIG changes and coincidentally (or not) she has claimed bowel issues since then.
She thinks she's constipated all the time, and is convinced drinking diet coke keeps her regular. So the diet coke gives her gas, possibly contributes to her diarrhea (which is what she really has), and it's a viscous cycle.
Additionally, her paranoia has increased. She thinks people are stealing her Diet Coke's because she's drinking them so fast because she thinks she's constipated. So she hides her Diet Coke, then can't find it, then gets mad. She's mad. She's mad when she can't find the Diet Coke, she's mad because she's "constipated" she's mad that nobody is fixing the constipation etc.
The nurse decided to increase her depacote to hopefully address the anger/agitation, but so far I haven't seen any changes other than more obsession, more paranoia.
This evening, the nurse called me to ask how we decrease or eliminate the diet coke. ARGH....I warned her that Mom would be angry at everyone, but that I was willing to let her run out and not bring a new supply.
The nurse pointed out that she's already unhappy, so it's not like we would be taking a happy person and depriving them of their only treat.
Thanks for listening to me vent....I hate that I can't fix this, or reason with Mom. She's always been stubborn and once she gets something in her head, dementia or not, she is hard to budge.
Anyone experience something similar or have words of advice or encouragement?
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Mom has gotten much better, as far as her rage and obsession goes, although I still get an occasional angry voice mail and/or call (if I answer.)
Friday I took Mom to a neurologist who specializes in dementia, and she took a bunch of cognitive tests, they also want her to get an MRI to see if they can pin point which dementia she has. They said it would help them treat it if they know what kind she has. With approx. 90 types, I'm thinking this could be a long shot, but what do I know. I kept expecting Mom to get frustrated and angry and refuse to take the tests, but she was a real trooper and kept trying.
She had the most trouble drawing a watch face...she got the numbers, but could not draw the hands at all.
Today I took her to the Dentist, then Olive Garden for lunch, and then her training session at the gym. She was pleasant the whole day. Maybe the rage thing has calmed down for now.
I'll keep you guys posted.
Anyway, she had a good day yesterday, but this morning she's called four times:
She can't poop, she needs diet coke, she only has $2, and she's yelled each time. I only answered the first call, let the rest go to voice mail so she can yell freely at my voice mail.
UGH.
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She hasn't called and left any awful voice mail messages!
Took her to the 4th of July parade yesterday and we all had a good time.
The Diet Coke obsession is still there, but diminished, not any rage anymore.
Maybe it's a phase that's going to come and go.
The appointment with the neurologist who specializes in Dementia is set up for a couple of weeks from now...
For the moment, life is good.
I think with my mother, a lot of her negativity was generational and her personality. She looked for things to find fault with and that wasn't just when she was 90, but always. That was just her, and it got worse as she aged. She was raised by family where men were important and woman, not so much, so she sometimes used helpless and being a victim to try for sympathy. It was sad, because she could flip in a minute and be stubbornly independent as well. At 70 she married a domineering horrible misogynist who controlled everything she did and thought. I think he pushed her the rest of the way and I hate to say it but family rejoiced when he died in 2000 because he treated her like a servant and like a pet - a possession. If he had lived, she surely would not have survived more than a couple of years.
My sister now lives in the same IL, and one of the residents is a woman who is 107! She can still get around, live independently and according to my sister, she is a barrel of laughs and is full of life, tells wonderful stories of her experiences. I'd like that to be me some day but if I am sick and unhappy, no I wouldn't want to live to 101, especially if I took everyone around me down.
My mother was in AL in a Brookdale facility (not memory care as her dementia was manageable) It was a beautiful place, but we were not impressed with the staff, or the horrible food. It was expensive, she had level 3 care, and we expected more. Her room was kept immaculate, but she lost her hearing aids in her room and it cost us $2000 to replace them. They didn't monitor her anorexic eating habits and didn't notice she was barely eating and skipping meals. To our knowledge made no attempt to provide foods she would eat and never expressed concern to us . I used to bring her yogurt, Ensure and sweets and I think that is mostly what she lived on. They didn't try to guide her even though her dementia was obvious that she needed more attention. She was not capable of realizing when her hearing aids weren't working or needed batteries but so many times I visited and she couldn't hear at all and I had to bring her to the nurse's station for batteries. We insisted they take the aids away from her at night and put them in in the morning after both were lost and she kept fidgeting and throwing away the batteries. It seemed they noticed little unless Sis and I pointed it out. I was surprised that in the 10 months she was they were only able to coax her into the shower twice. (she was stubborn!) She finally got so weak we had to move her to a NH and she got much better care there and much better tasting food. But by then it was too late. She was 101 and time I guess. But her health was excellent and I can't help thinking she might have had more time if she had more appealing food and oversight at the AL.
So, I'm happy for you and your Mom, that she has people who are very into her special needs.
My mother was in AL in a Brookdale facility (not memory care as her dementia was manageable) It was a beautiful place, but we were not impressed with the staff, or the horrible food. It was expensive, she had level 3 care, and we expected more. Her room was kept immaculate, but she lost her hearing aids in her room and it cost us $2000 to replace them. They didn't monitor her anorexic eating habits and didn't notice she was barely eating and skipping meals. To our knowledge made no attempt to provide foods she would eat and never expressed concern to us . I used to bring her yogurt, Ensure and sweets and I think that is mostly what she lived on. They didn't try to guide her even though her dementia was obvious that she needed more attention. She was not capable of realizing when her hearing aids weren't working or needed batteries but so many times I visited and she couldn't hear at all and I had to bring her to the nurse's station for batteries. We insisted they take the aids away from her at night and put them in in the morning after both were lost and she kept fidgeting and throwing away the batteries. It seemed they noticed little unless Sis and I pointed it out. I was surprised that in the 10 months she was there they were only able to coax her into the shower twice. (she was stubborn!) She finally got so weak we had to move her to a NH and she got much better care there and much better tasting appealing food. But by then she was down to 85 pounds. She was 101 and miserably unhappy, so when she passed it was a blessing for her and for us. But all her life, her health was excellent and I can't help wondering if she might have had more time if she had been given more oversight, appetite enhancers and more appealing food at the AL.
So, I'm happy for you and your Mom, that she has people who are very into her special needs.
Her caregiver took her to play cribbage at the senior center and reported back that today was almost like "old times" the old times of three weeks ago! ha.
Also, Mom has only called once today.
We had the quarterly review at the memory home today, and they faxed over a referral to the neurologist, who comes highly recommended for this area. Mom will get evaluated, and we will make sure she is on the correct meds for her.
So it was the director of nursing, another RN, the director of the facility, the director of activities, me, and the case-worker who I have contracted with (the company providing the outside caregivers also provides guidance for all aspects of elderly care.)
Almost all of them said that they think it sounds like Mom might have FTD. Like a total dummy, I said, "Frontal, Temporal....what's the D stand for?"
DUH....D=Dementia. ha ha ha Anyway, they said if the neurologist can confirm or come close to figuring out which type of dementia mom has, that will make it better for accurate medicine etc.
So that's the next step.
Question: since your mother gets so agitated, is it possible the doctor can put her on a tranquilizer? When Mom's dementia got worse and she was frustrated, she got angry and nasty sometimes, even pushed my sister. An antidepressant and tranquilizer helped her a lot. Maybe it would help with your Mom's obsession about bowels and soda? Mom finally got over her MOM obsession mainly because once moved to AL, she didn't have access to buying it as she did in IL, and she forgot about it. Prayers you can deal with your Mom and she will settle down soon.
I do believe there is a nurse there that rubs Mom the wrong way, I was actually getting a vibe from her. The nurse had an attitude, and the nurse is convinced Mom is going to hit her. I'm thinking to myself, well she might if you can't lose the attitude, she's demented but not stupid, she can read vibes off people!!!
Anyway, I'm glad Mom didn't rage at me today, but it's kind of sad when she's' so confused. This disease stinks big time!!!
Also, update: no UTI, just a rather swift & bizarre change in behavior. Tomorrow should be interesting, I'm taking her to the gym for her session with her personal trainer. Last week was OK, so fingers crossed that Mom is saving most of the anger for the voice mail.
Yeah, ain't happening.
She's angry, can't find the Diet Coke that we do bring, today she had roughly 36 again and was calling to tell me she had none! 😐
Darn, this is an awful predicament, one we wish we didn't need to be involved in. But we have to do what's RIGHT for them first, whether they like it or not. There is no simple answer.
Sulynn,
It's very common for stroke victims to only be able to swear,but not talk, after their stroke. Maybe this is true with Alzheimer's/dementia also. The other words don't come out well but the swear words do. She is not responsible for her actions or words.
Because she can't find a stash of diet coke in her room, she is OBSESSED. She is still convinced she can't poop, every time she sits on the pot and doesn't poop, she goes looking for diet coke. Every time she can't find the diet coke, she calls me.
I actually answered one of her calls and explained that there was one or two in her room and the rest were down the hall. I had to re-explain in four times in the same phone call. She called two minutes later wanting to know where her diet coke was.
This is not going well. She's FURIOUS. I quit answering the phone, but her voice mail messages are full of rage. She went raging to the nurse, who gave her a fiber wafer (that I picked up and brought to them for that very purpose.) Said Mom was yelling and in her face until she gave her the wafers. Mom went back to her room and called me to say the nurse didn't help her.
So much for the Placebo affect.
If I put a bunch of Diet Coke in her room so that she'll calm down about not having it, she will drink them all too fast, and add to her bowel issues.
If I don't, she will stay ANGRY and upset.
Gee....so much fun!
The quarterly review/meeting with the staff is next week (great timing....you bet we will be discussing strategies for this obsession)
Also, no answer yet on the possible UTI, but up till now she's not ever had one, and she's had raging episodes before. I'm not holding out hope that it's a solvable UTI.
At least she didn't yell at me while I was there visiting, she saving that for the voice mails.
Blackhole, yes, I too have been known to have caffeine withdrawal headaches...and I do love Diet Coke like my Mom (it's the only soda we had in the house when I was growing up) however I have made an effort to cut way back. I have days where I don't have any, and days where I have a few of them. Been trying other non-sweetened options, which are usually a decent substitute if they are cold enough! ha ha
Anyway, I spoke with one of the floor caregivers today about Mom, and she said that even she noticed how many Diet Coke's Mom has been drinking, and we discussed the option of keeping Mom's DCs in the large "fridge" to be handed out at meal time only. Our angle is to tell Mom that since people are stealing her DC's, (which she believes is happening) keeping them in the "big" fridge will ensure that she doesn't run out....
I think cutting her off completely at this stage is just cruel! Today I stopped by to see her and she's back on the kick of wanting to live with me. There is nothing I can say that makes her happy except OK, and I'm not saying OK. So instead I told her I would look into it. I'll see how long that works...I tried distraction, which worked for a few minutes, but as I was leaving she brought it up again. She says, "I want to live with you and clean your house." As if that will seal the deal!!!!
Back to watching the Teepa Snow videos....WOW....so inspiring. I want to be able to have those awesome lines and calm down my own Mom....seems like everything I do just gives her an opportunity to argue with me. I don't want that, but there are so few things I can say that are non-arguable. Is that even a word?
OH, and my son, he's the one addicted to the Ramen Noodles.....
If Mom abruptly goes from all that caffeine to none, she'll feel lethargic and headache-y and be extra cranky. (Can you tell I have a wee caffeine dependency myself??! Not Diet Coke, thank the good Lord.)
And I know everyone's system is different, but artificial sweeteners wreak havoc with my gut. Bloating, stabbing pains, weird gas and spells of, um, "overactivity."
Your poor mother. Classic dementia. She hones in on a problem that she needs to "fix," and her chosen solution makes it worse....or creates a new problem.
Check Mom's fridge and meal plan for "light" yogurt. They're also full of those same garbage sweeteners.
And -- again, just me -- but sucralose (and sweeteners in that category) are hard on my gut, too.
I would be concerned about too much diet coke. Latest medical studies are starting to identify the dangers of aspertame, and also artificial sweetners mess up the body's metabolism and can cause weight gain, believe it or not. If the drink contains caffeine, that can also cause anxiety and even irritability, etc. Perhaps the staff there can help transition her to some sort of natural soda or drinks? Some of the health food stores carry natural soda.