My husband was diagnosed with Dementia/Alzheimers type about 8 years ago. At first it was just repeating stories but since, as expected with the disease he has progressed. However, after all this time he is still manageable. It's just that my life, as full time caregiver is focused on him and his needs and nothing else. I don't want to complain but I find myself resenting having to sit around, answering questions, changing channels and trying to redirect....constantly!
My husband has sundowners so in the daytime he's not as bad, although he's very confused. Most of the time he thinks there are other people in the house, worries over the door locks, opens and relocks the doors up to 40+ times each evening. He thinks he's been robbed so he hides things all the time, we both do a search and usually find the item stashed in ridiculous places. He says he's talked with his mother who passed about 15 years ago and thinks she has spent the night. Wants the TV turned down so we don't wake her. These confusions go on all day from about 6:00A.M. to 11:00 P.M.
But I don't have to change diapers, deal with a wheelchair or any heavy work. He's very healthy...just this blasted confusion!
Then there are my family and my one friend. They say I've changed, closed in too much and suggest that I should go ahead and put him in Assisted Living so I can have a life.
I found an AL and I'm next on the waiting list. They already called but I asked to just be kept on the list for the next available room. I'm so confused myself about making that huge move. I guess I keep waiting for something to happen so his needs are increased or so I wouldn't be able to care for him for some reason. I know some people have loved ones who are so much worse and they still care for them.
I never expected this to be so hard! He is 76 and I'm 75. I can't imagine putting him in a place and driving away. Of course, I'd go visit all the time but to just leave him when he's so attached and dependent on me....I just don't know what would happen to him. But others say we'd have more quality time together....so, I swing from one side to the other. I think I'm more confused than he is!! How have you all dealt with placing your loved ones? And I apologize for being so longwinded!
Thanks so much for your comments and suggestions.
But I guess I'm not that strong...the constant confusion is becoming too much. I'm having bowel problems (IBS), I've had shingles 3 times in the past two years ( doc didn't give me the shot because he said I should be immune now) and I just feel sorta down most of the time.
Anyway, you say there is some familiarity at home. Not the case here, my husband never realizes that he is at home. Instead, several times a day he asks when we are going home. In fact, often I walk into the bedroom and he has all his clothes on the bed preparing to "leave this place" because we didn't pay for another night. He thinks it's a hotel!
Thanks for your comments and good luck with your dad and if you decide to move him to be near you.
It makes it so,hard when the only thing wrong is memory. But people don't realize ( including me!) that dealing with mental issues is very taxing and wearing on the caregiver. Physical problems can be seen and better assessed by health care people.
I think if a nurse would sit and talk with my husband he could pull off a decent conversation for awhile anyway. If things are laid out for him, he can take a shower. If food is put I. Front of him, he can feed himself. He can also use the bathroom, heat coffee in the microwave and shovel snow off the driveway!!
It makes it so hard to get help when people don't really see him at sundown or hear all the nonsensical questions all day and night. So the hardest part may lie ahead of me and that's the result of the evaluations. More hurdles....
In the meantime, I was called by the AL that there was another opening. I wasnt expecting a call so soon, it has only been a month since the last one! I was so conflicted once again as what to do especially since my brother died and I had bought a ticket to fly to his memorial services next month, in April. Two days ago I called her and once again, turned down the opening...just couldn't do it!
The owner of the AL is so nice, she offered to keep him for respite care the 6 days I will be gone. This way I'll be able to see how he does there, I'll get a much needed break and if she gets another opening close to that time, she'll hold it for him. It was like a ton of weight fell off that day! So that is my next plan of action...
But...when I went yesterday to pick up the paperwork that needs to be done, there were about 9 people lined around the living room (it's just a big old house) doing nothing! Some were asleep, some just slouched there staring at the floor and none spoke to us. Bob sat down in there but even he wasn't his usual self...he didn't say anything either. I don't feel like the place is appropriate at all. Now I'm hating that I'll leave him there for the 6 days but I have no choice now. I mean, he could be playing ping pong, pool or just some decent conversation. I did t realize so many there were beyond that...
At this point I don't know what I'll do when I get home. All I can say is it's next month and I'll check out more places. This owner has been so nice I do t want to do that but how can I leave him where there do t seem to be any activities. Or maybe I went at a slow time...not sure. But I'm still so confused about what to do and when to do it!
By the way, I did call Area Agency on aging and they wouldnt talk to me if he has more than $2000. He does, but it will be spent down on the facility when he goes in. So they were really no help. I might try them again today and just try to get a list of AL's. The reason I found the current AL is because she will take people right in and accept Mediciad. Most ask for at least a year or two of private pay first which amounts to about $150,000. We just don't have it!
Read through all the comments here again today...they are such a blessing to me! I'll keep you all posted....