I've run up against a new issue. Our Case Manager keeps in touch monthly with quarterly in-home visits. When she comes to the house she brings a scales and BP cuff and checks DH with both. Once before, while in early mid-Stage 5, he had lost some weight and she encouraged him to continue working on it. He sees her as an Authority figure. DH has never eaten in what you'd call a normal pattern and definitely not a well rounded diet. I supplement with a good Multi-vitamin for Senior Men. He choses 3-4 things to eat and has them twice a day--right now that's been 2-4 pieces of lunchmeat or hotdogs(cold) and about 2-3 cups split between cottage cheese and macaroni salad. Generally, he also has a snack--2 bakery strudel sticks and a glass of milk msometine during the day. DH's idea of dieting is to reduce his intake to 1 meal per day, equal to slightly less than what he was taking in for a meal. He loses. The first time he dropped to 212. She said good enough. When he resumed eating, over time his weight climbed to 258. Thre first time the issue of dieting came up, I told her, my concern was 2 fold--1--the Dementia will eventually cause weight loss anyway, and 2--his method isn't healthy and there are side effects--increased aggitation, worse sundowning and inability to go to sleep becausae he's hungry. I told her we weren't "dieting". Last May (mid) DH weighed 258. Nov. 16th he weighed 228 ( an 11.6% loss). She was very positive about that. DH asked if he should lose more. She encouraged him to aim for 200. He's "dieting" again. He wants to be at her goal by mid Jan.(A 12.+% loss in 3 mos. and 22.+% total in 9 mos.) when he sees her again. When she encouraged him in Nov. I told her that being well into Stage 6 now, I wasn't worried about him dieting. The VaD would be affecting his weight soon enough. I was happy he was eating. She indicated that it would be healthier for him to weigh less and he'd be easier to handle for caregivers as the need arose. When he went into his "dieting' mode, I contacted her and asked her to stop by and tell him his weight loses is good enough for now, since he isn't listening to me, and he sees her as the Authority. She replied that she was unable to comply. Told me to read a message to him, being sure to tell him it ewas from her. And that if I was still comncerned to take him to his PCP. The message is the type of healthy diet message you hear at healthy expo's. I read it to DH. It went right through his head or over it. SAince then I've tried to reinforce it a couple timesnly to be told it's BS. Right now he's fluctuating between eating and dieting. I called and asked Hospice if they'd tell me what the weight loss parameters were that are a part of their measures for quakifying. I was tod 10%. But that isn't the only thing enrollment is based on. I told them what was happening and was told flat out, "Reccommending dieting to Dementia patients is totally inappropriate." I themn contacted our PCP, and the nurse there was astounded. I've provided the above information and asked the PCP to send a letter to the Case Manager, making it clear that DH is not to be encouraged to diet.
Just thought others might like a heads up, about Dieting for the Demented Spouse.
Except for this she's been excellent. No issues with providing in-home help, and she's the one who more or less forced me into taking and using respite time as it was intended. I was only using it to cover times I had to do my own medical things. In fact, what she did was set me up with 4 hours per month and told me my medical would be set up separate from the 4 hrs. I thanked her nicely, and then after hanging up, thought, 'What the H** am I going to do with that?" It had been so long since I'd had any true free time I really didn't know what I'd do with it. She is knowledgeable about his health issues otherwise and his meds. But she sure doesn't "get" the weight issue, and with DH seeing her as the Authority on it--we have a problem.
Let's hope that the PCP comes through for you, and sets your husband's authority figure, aka Case Manager, straight on the dieting issue. My husband's at the stage where he is skin stretched across bone, and this malnutrition is what is going to cause his death.
That's crazy! At one point Jim was gaining an average of 10 lbs a month. He was concerned about it, but the craving for sweets, can be extreme for an FTD patient. His Dr told him not to worry about, to enjoy his sweets. He eventually made peace with it and looked at me one day and said, "Hell, what's it going to do, kill me?" He was so happy when I made cookies, pies or bought any treats. My thoughts were if it makes him happy then it's fine. Problem was I gained along with him. When we were at the Hospice House, one of the last things he asked me was, "If I fall asleep, will they bring my lunch?" He only woke one more time and that was to ask if 'his' girls (my devoted daughter and my son's girlfriend whom he adored) were coming, he knew how bad he was, I told him yes, he nodded and never woke.
New wrinkle--Dr.'s Office called. Asked where to send his note. Nurse said he read over my email including the copy of the Case Manager's healthy eating talk. She said his note says he agrees with everything above. I asked, "Then he agrees with not promoting dieting but also with her input to eat healthy and lose?
She's going to ask that he clarify himslf nd then they'll send it to her.