My husband has been in the nursing home for two months now and the last few times I have been to see him he seems to be more lucid than he has been in years. He is very calm and he keeps telling me that he wants to come home now. There are only a few moments that he slides back into ALZ world. He was so sick before. He has a foley (is that the right way to spell it) and he has lost a lot of weight. The dr. says that because he is getting rid of the fluids that were building up in his body that he is doing better physically. What takes me aback is he seems so normal...right up until he tells me that he is living in the army barracks and I need to talk to the captain to see if he can give us the lift he needs to get in and out of the chair. I have no idea...is this normal? Just three weeks ago he could not feed himself and was refusing to eat. Now he is going to the dining room and eating with other patients. I am blown away! I am happy that he is doing better but now he is telling me that I am not there enough and when am I coming back. This whole trip has about drained me totally emotionally. I am not sure if it was better when he wasn't so lucid and the next time I go to see him he may not say a word. It is FRUSTRATING!
Dellmc53, I can only imagine how frustrating this must be for you. Can I ask why he has the Foley in. I was thinking of having Hospice insert a catheter to prevent my husband from inappropriate urinating but the one nurse told me he might pull it out and could do a lot of damage. I think when we get used to see our DH in a certain way or at a certain level and then it changes, it can be maddening. I know for myself I do not like change.
All we can do is enjoy those moments. Sometimes removing toxicity from the body can help them regain some momentum. But then if it's true dementia it's usually temporary . My DH regained some cognitive functions mid stages when we removed the AD meds. Make these times count and make wonderful memories while he's lucid:)!
He had some sort of blockage that prevented him from urinating (that is what they told me in the hospital) and he was unable to go when he didn't have it in. I too was afraid that he would pull it out in the hospital because he pulled out all i v's and a port in his neck. It was a miracle he left it alone and I was so thankful. He was very dilerious while in the hospital but he also had sepsis. Those all have cleared up. He is unable to walk now at all and was falling down all of the time before he went into the hospital. Having to put him in the nursing home was such a hard decision and I was getting used to the idea that they could take such better care of him than I could. But days like today make me second guess myself and that old guilt monster raises his head. I HATE this! There seems to be no peace no matter what we do!
Many of us have been where you are--second guessing placement, thinking how you can do this or that if he's home, etc. But sometimes placement is to give the caregiver a chance to live. Most of us--and I'm at the head of the line--wait too long for our own well-being to place a loved one. And knock off the guilt, sometimes guilt makes us make the wrong decisions. It sounds like your DH is doing as well as can be expected. Don't question the good times, just enjoy them.
First, let me say that what you describe is "normal", if that word ever applies here, with dementia, particularly Alzheimer's Disease. They can seem perfectly normal one minute, and the next minute be off in Alzheimer land. I always liken it to frayed wires that wiggle around, and every once in awhile, one connects.
But what really floored me was what you said about where your husband thought he was. I had the EXACT same situation with Sid a month or two ago. When I sat down to talk to him, he told me that he had signed up for the National Guard ( which he did - in 1964), and now he was in a waiting game. He had to wait to see if they were going to take him. Then he said that he was in a real mess, because he had changed his mind, and he no longer wanted to go into the Guard. He was very worried about going. He said that the officers here ( the NH staff) had changed out of their uniforms into the civilian clothes they were wearing now, but they were all watching him. He was very stressed and worried that they were going to make him join. I told him not to worry about it - that I had influence with the National Guard, and I could make sure that he didn't go. He was very surprised, but happy that I could do that for him, and he calmed down.
Anyone who trains staff to work with Alzheimer patients should emphasize what I was taught - they can no longer live in your world, so you have to live in their world. Trying to tell them that they are NOT in the army or wherever they think they are; trying to argue them into reality; and insisting that they are in the here and now is absolutely a waste of time and breath. Not only that, it upsets them to the point that their behavior escalates into rages (if they are prone to that) or hysteria and stress. Just calmly and quietly go along with wherever they think they are, and either say something to calm them, like I did with Sid, or distract them to an activity that will soothe them.
Then the next day, they can seem perfectly normal. That is exactly what happens with Sid all of the time. One day I can go in and he will be shocked and say - What are you doing here???? How did you find me??? The next day, I can walk in, and he can say that he's too busy to visit with me. He's working, and his boss doesn't like him to take a break. The next day, I can walk in, and he will say - I'm so happy to see you. Yes, it can drive you nuts, but that's Alzheimer's Disease.
Dellmc53, I take this as a sign that the ALF is providing your husband what he needs. The fluids is one issue. They may also be providing a much more structured environment for him that could not be provided at home. I suspect if he were removed from the LTC you would see him lose what he has recently gained. He will eventually this this anyway.
Thank you so much for your comments. I think that this whole world that I have now entered full time has overwhelmed me. It seems weird to be glad that something so bizarre is ok in his world. I have learned that when he tells me these things I just agree with him or try to change the subject. He seemed perfectly ok with living in the barracks for a while but assured me that he wanted me to talk to the captain to get him out of there. I played the piano and sang for him some of the old songs that I used to play for him when he was at home. He sang along with me on a few of them. It made me happy that we had connected but tears were running down my face the whole time it was so emotional for me. He now says he must have a phone and i told him I would check into it. He has forgotten how to use any kind of phone. I just cannot think of an adjective in the English language that describes this sadness that so many of us are suffering. I am SO glad that I found this site. It does help MY sanity!