Okay, I'm experiencing a new thing, I think, on this road. Lately, John refuses to rise from his bed. I must bring him his meals (which he refuses) and drinks (which he refuses because he says it makes him want to pee and he doesn't want to get up). When I go to check on him, he is just lying there, sometimes with his eyes open, sometimes asleep. I have to ARGUE with him to get him to do the things he HAS to do....like take a bath (every other day) or go to get groceries with me or get up because a therapist is coming...or a social worker or nurse. IHATE THOSE ARGUEMENTIVE SESSIONS WHICH CAN LEAD TO ABUSIVE LANGUAGE AND ACTIONS ON HIS PART. I have been trying to warn him that I'm afraid that (because of all the health officials coming around to our home to see this) they will tell me he is ready for a nursing home and will take this out of my hands and FORCE me to have him placed . I understand they can do this. He says he'll kill himself first. He DOES NOT want to be in a nursing home ever again. And I've told him he won't go there again unless I am unable to care for him safely. (I can LIFT the man in and out of the bed and car....the bathtub is harder and he WILL NOT take a shower). A year and a half ago, he WAS on Paxil (an anti-depressant?) that I didn't think was helping any at all. And, a very small dose. He is currently taking Namenda,Aricept and Seroquel (can take up to 175mg a day, but it's usually only 125mg.) The visiting nurse is coming tomorrow, I believe. She'll be in touch with his PCP about my questions about this issue, depression. In the meantime, do any of you believe that I could be correct in thinking he's very depressed? I've told him (as well as his PT) that for every day he stays in bed, it takes THREE to recoup and build up his strength again....and that's our objective, to make him stronger so he's not such a "fall risk".
He could be depressed..or it just could be the disease. It helps immensely that you will have a visiting nurse there who can see him as he is. I wish I did, because if I tell his PCP he does or does not do something, DH will deny and and try to prove me wrong every time.
I hate to think anyone would believe I am making all of this up...and even though his Neurologist says he is in the very severe stage of AD, he can fake it like a Barrymore when someone comes in. awgggggggggg.
If he does not get up tomorrow easily, I would leave him in bed for the visiting nurse to witness. If he has to go to a facility, then so be it or you can choose to continue to leave things as it is. When you get tired or frustrated, just remember it was your choice to tolerate this phase of the illness. BUT - if the violence continues, you need to put emotion aside and place him for yours and his safety.
He is acting like a spoiled child trying to get you do everything and make it as hard as possible on you when he does do it. Big difference is a child can be reasoned with - he can't.
and, JEN, try to remember that his REASONING SENSES are no longer existant. If he occasionally acts like he is OK, he is pretending, just like my husband and hundreds of others do. He has a degenerating brain disease and one of the first parts of the brain to go is the part that allows them to be 'reasoned with', for want of a better description. He can't help the way he is behaving, - and I, FOR ONE, often forget that as well....just as my other posts have demonstrated.
The PT was just here and witnessed what I had been expressing. NO cooperation, although we did manage to get him downstairs and to the front porch where he can be comfortable and in the beautiful weather. .....and watch me and a neighbor work on our fenceline. (John will be within my sight) It sure looks like extreme depression to me....being diagnosed with clinical depression myself, I can see what it is. But, how is it determined that it isn't simply the progression of the disease. I hate to add medications for no reason. Time will tell. Neurologist visit not scheduled until SEPTEMBER. Thanks, Jen.
ALSO.....she told him that it is a very real possibility that if he won't cooperate and be able to help himself, THEY will make the decision FOR me to have him placed in a nursing facility because it will be deemed impossible for me to care for him without his cooperation. It made no impact, except he said he wanted to die.
How sad for You, Jen, because you are trying so hard to make him be strong again. His response didn't mean anything. He is not responding to the "reasoning" attempt. He doesn't understand that. Oh, they have little glimpses of reality sometime, but then it goes away. I've read other posts where someone will say, "He was like his old self for a while today and we enjoyed those moments before he slipped back into his own world." They come and go...and eventually they just "GO".
Yes. Another nurse is coming by this afternoon around four o'clock to ask him some questions and suggest medication for depression (guess she'll have to contact his PCP for prescribing?)
I don't understand the PT telling him they will make the decision if he won't cooperate and help himself. Doesn't she know the the people with AD don't understand what others are saying? The reason button is BROKEN! Surely these people should know SOMETHING. I can talk to my DH and I can tell by the look on his face he has no idea what I am talking about and he is or was in the mild stage.
I feel sad for not only you, StuntGirl, but also for John. I can't imagine what it must feel like to be so confused, insecure, not being able to think straight, sometimes nothing making any sense. It's got to be scary, and no wonder depressing. God bless you both for what terrible thing is happening to you.
Yeah, I walked with her out to her car and asked once again how they can determine if this refusal to cooperate is "depression" as she suggests or is it a manefestation of his disease and his decline. I mean, when does one stop trying to do all this stuff? I understand they want (and I want) to help John be more physically stable, but something has to make him WANT to. Maybe an antidepressant will help. Maybe that will make him want to participate, but inside, I don't believe so. Frankly, l don't believe that some of the people coming over here understand Alzheimers.
StuntGirl: I've been following your saga for several months and commend you on your decision to bring John home in spite of the hardship. I believe you were doing what John wanted. It may be that John is clinically depressed and certainly the disease has affected his reasoning ability. It may also be that he has accurately accessed his situation.
From what little I know I'm assuming that John is a person who enjoyed life to the fullest and (like myself) always cherished his independence.
I remember a quotation from columnist Stewart Alsop who wrote for the Saturday Evening Post and Newsweek in 60s and 70s. Following a long battle with cancer he wrote in one of his final columns:
"A dying man needs to die, as a sleepy man needs to sleep, and there comes a time when it is wrong, as well as useless to resist."
If that time is not now for John it is certainly coming. I personally hope that when my turn comes people will respect my choice rather than trying to second-guess my state of mind.
Beautifully written. I remember Stewart Alsop.. don't recall that quotation, but I will copy it ..it is powerful and should be recognized by all caregivers and families of those with terminal illnesses.
Thank you, danielp......Great quotation. The nurse just left....she talked at length with John. He is so lethargic....talks low with his eyes closed. Wouldn't admit any pain issues he's having. Said it's just because he's so bored, though he's never been interested in ANYthing but medicine....and sailing (which I hated). So, she isn't going to recommend any antidepressants at this time. BUT next week when she comes back,she wants to see what he has decided to do with his time other than sleep and sit.....water colour? Photography? Reading? Following current events? I doubt there will be anything. I really hope to try out antidepressants.
Do any of our spouses watercolor or take photographs. Jen, darling, they don't do that anymore because that part of their being is gone. All my husband does is sit and sleep - and he is comfortable and OK. He's not fun, he doesn't make me laugh, we don't share, but I talk to him all day long - (poor guy) - just as I did with my little children before they could carry on conversations.
I agree, Nancy. And, that's why I think that the nurses and aids that come around just don't understand the nature of this disease. They are all treating him as if he can "get better". I'm really beside myselft at times. I'm trying to be a realist about this. I follow these people out to their cars after the visits with John and express to them my understanding about Alz. and ask questions. Once, I was told that John and I were "bickering" during the last visit.......that was because he was tellling the nurse he is up all the time and goes all over the house, I just forget......and about the boyfriends. Yep, guess I "bickered" with him about that. I don't want these care givers that come over believing the marvelous feats he performs that I don't know about. It's all lies. He won't even tell them how much he apparently hurts......says they can't do anything for him, so, I don't know if his pain is real or not, ever.
Jen, these people know doodly-squat about dementia...that is pretty obvious. First of all, at John's age and degree of impairment, you always treat for pain.....anyone his age is bound to have some arthritic joints and with the amount of time he spends lying and sitting down it is a pretty good bet that walking is not easy for him....
Anyone who has any dementia training should know that John is not going to take up a hobby at this stage of the game. Good Lord, and they question why lay people don't know what to do when confronted with this disease....even the so-called "experts" are clueless....