This stage is not talked about in the "stages". It's that place where the long and short term memory is disappearing, behaviour is going from very nice, nothing wrong with this person to nasty , yelling, screaming, then apologize. It's that stage where" I want to try living at home, even just in the daytime, to "I need to go back to my residence as I am all anxious and frightened." Then" what time will you pick up tomorrow". It's that stage where the trying to hang on to what was and to try to keep what is coming at bay. I I think this is about the worse stage we have been in on this journey. It is the most heart breaking that I have seen happen to him so far. It must be terrible to want so badly to be at home with your loved one but to still realize that because of this disease you can't and never will. To try and try to hang on to who you were but never able to get back there. To see the changes but not be able to stop them from taking you to were you don't want to go. Will it be easier when he can't remember or want these things anymore? Will he ever not want his past life? Will the disease take this away or will he ever be past this "STAGE"? How do I help him? Can I help him? What do I do?
Wish I knew the answer Jazzy. I do know my life would improve if my DH would forget that he wants to go to "his place." He thinks he is visiting here in the house we've lived in for 25 years and that it is my house and I am his friend. His wife," who he hasn't seen in a long time" Lives there in spite of the fact that we have been married for 56 years. I feel this is his way of wanting to go back to who he used to be.
He is in bed again this morning sleeping. Very tired. He decided not to visit today because he was so upset yesterday. I just don't know how to tell him he can't come here anymore because it upsets him. He gets so depressed if he can't come and so depressed if he comes. I just don't know how to handle this problem. He is so desperate to hang on to what was. He is so frightened as he can see the changes but didn't before. We are told it will be better once they are placed but that is a bunch of horse dung. We just have different problems other then diaper changing and wandering.
First, be consistent. You stopped the overnight visits a while ago because Kevan got upset and for the same reason, you decided that he should not visit your house during the day, either. Now he’s back there again. Kevan should not be the one deciding whether or not to visit. If he brings it up, see if you can avoid telling him that there will be no more visits - you could change the subject or suggest a different activity. On the days you are going to spend time with him, plan an activity that does not involve being at your house. If you do stop at the house with him, don't do it often and keep the visits short. Don't let him get too comfortable there.
Second, don't encourage him to think of your house as “home.” During the time Kevan has been in the ALF, you moved several times, so he has never lived in your house. You told us that in the past, he called the ALF his “home” and called your house “your place.” So if he asks about the condo, refer to it as "my place" or "the house." Since he thinks of the ALF as his home, telling him his "home" is somewhere else may be undermining his sense of security.
Jazzy, I so understand where you are coming from When things would get overwhelming for me I would tell myself this too shall pass. Once I placed my husband in the beginning I did take him out and even brought him home on the weekends but never overnight and usually only for a couple of hours. As time progressed though I stopped it because it was becoming too hard on me. The progression of the disease is unrelenting for sure. As many have said here before, each person is different and it is near impossible to compare ones symptoms with someone else's symptoms. My husband was aware of what was happening to him until 3 days before he passed. My neighbor's husband is 93 and on hospice and he is oblivious to his condition. It depends I think on the part of the brain that is affected. Yes placement is tough and yes placement does create new problems but for me I at least could get a good night's sleep and created some space for myself. It helped me to at least function. My neighbor's wife is paying for a caregiver 8 hours a day to take care of her husband and it is costing her $4,000 a month. To each his own I guess. Yes this stage will pass. Sometimes the decline is slow and sometimes it is more rapid. I did read the stages but I never really followed them too closely. Sending a big hug. Try to just take today and not to focus too far into the future.
Jazzy, when I first found out the dx for my DH I wanted to read and research all of the books, articles, movies, etc that were out there regarding this horrible disease. The only problem is, they can give us some very generalized "stages" for the disease but there doesn't seem to be a norm for what I call, for lack of a better word, a "normal" or "expected" stage of this disease. My husband is still able to retrieve a lot of his vocabulary and carry on a conversation, yet he cannot figure out how to use a fork anymore. I have decided that I am just going to have to ride this horrible wave until the end and everybody is different. My husband's roommate also has ALZ and yet he has a totally different set of problems. The dr tells me that Jax is in stage 6, and so i looked up what that should look like. He doesn't fit for a lot of the symptoms. My husband also wants to go with me when I get ready to leave and he tells me to go get the car and he will meet me in the parking lot. It is so hard to figure out what to say to him. He does not seem to realize that he can no longer walk. There are no guidebooks to help us through this. It helps to hear others share their experiences and realize that we are not alone. The struggle is to manage our own feelings and take care of ourselves. I keep telling myself that he is getting good care and is safe. But it doesn't stop my heart from breaking every time I walk out the door and leave him there.
I like to use early, middle and late stages. When I took that dementia course through Tasmania University, that is all they use down in Australia. I like it because as mentioned - they usually have symptoms in more than one sub-stages so to speak. They don't fit in just one of the sub-stages.
He hasn't mentioned coming here again but asked if I were coming to visit him. Tomorrow is dental check up and lunch out so maybe that will make a nice trip out. Friday is coffee morning with him but no outing. Stages are now a "here he is now" thing. He is all over the place. I find it hard to say no to him. We have always been and done everything together and now that is gone and it is hard for both of us. He now asks for permission to do anything. He never did that before. He will say" can I have a coffee?" Or " can I have that cookie?" I don't know if I will survive these stages. I just hate to see him like this. He is like a little boy one minute and a brute next, although now I am no longer the target, thank goodness. I think I need to change my thinking and let go of the "Us". That's all gone.
My experiences were different in some ways…Larry simply never could settle to being placed, and being so much younger and a nurse, I just gave up and kept him at home with care in the house when it was needed. And he never, ever would admit or was aware that anything was wrong with him. ("I don't need this, I don't need that…etc., etc….while people around him were tearing their hair out.) So I don't post much on the threads that deal with placement…I'm more the resource for the miseries of home care. Heh-heh-heh.
What I wanted to say though, Jazzy, is that over these months and years of reading the story of you and Kevan, your strength and resilience have been an inspiration to me. The way you advocate for him and take no nonsense from anybody when it concerns his well-being…the way you have stood up to your family at times…the way you have moved around and been able to establish a new home…with dog, and craft interests…wherever you need to be to help Kevan…this has been truly inspirational. So thank you for being an example of how to hang in there and be a great caregiver. Love and hugs. ((( ))).
Jazzy, I agree with elizabeth about how strong and resilient you have been in handling all this complicated stuff that has been thrown your way. In addition, your challenges seem to be little different from some of ours because Kevan is so self-directed. For example, he made the decision to admit himself to LTC, chose the facility, found a support group for himself, etc. Plus, he keeps trying to take charge of things, e.g., deciding that he'll fix things in your house, deciding that he'll come for visits. Some of his decisions work out well but others are just not good decisions, and then you end up having to take control and getting things back on track. No wonder you feel like you're on a merry-go-round.