I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Can anyone relate? Does anyone have suggestions as to what to do about it?
It is difficult to be stimulated by any conversation when you are exhausted and your mind is racing in 10 different directions trying to remember if you did this or that or if you forgot an appointment. You aren't going to get it at home and, if you are in your late 60's and up, the conversation with your friends is limited to what aches and whose spouse is in worse shape. If you can get someone to come and stay with Sid why not take one day a week, or month, and join a book club or group that stimulates your mind. Support groups only dwell on what you are facing everyday so they don't count. Find something you are passionate about and join a chat room (not ALZ!) and throw in your opinion. In these days of online chats you should be able to find something that excites you.
Phil is right...such online opportunities help. They do not replace real life interaction though. During the rare times when I find myself with other humans who can converse, I find that I am no longer slightly quiet and reserved, as I used to be. I jump in, like a dehydrated person at an oasis.
emily, I'm the same way. We just had some dear friends from 600 miles away visit for 3 days. They were so great with DH - and since he goes to bed so early, I actually had some real conversation for 3 nights and some during the day. But I would find myself, who has always been reserved and quiet - yakking away! I did feel dehydrated - they left this morning and I hope I can still "taste" some of that water I drank while they were here.
Today was a good example of "intellectual stimulation". My wife goes to day care M, W, and F from 9-2. Today our retirement Inn had its weekly "sandwich and a poem", where we each brought a sandwich and 1 or 2 poems to read. We had a total of 9 people. 2 of them had written the poems they read. The others of us found ones we liked. I get double benefit from this because I have been reading from my wife's college poetry book in which she has selected ones she used in a slide/tape show she put together on "The Earth is the Lords".
I liked the comparisons to thirst. I feel like I'm parched (consider that word underlined) for something besides caregiving and the Alzheimer's world.
DH and I were never what you would call social people, but we liked to get out and do things—take classes, go down a road just because it was there, read up on new topics, etc. My sister once told me that she liked to visit us, because we always had something new we were interested in. Now that doing something interesting has dwindled down to practically nothing. I feel like my brain is shrinking right along with DH's. If I understand some of the research that's been published lately, that's exactly what is happening, because of the lack of mental stimulation and socialization.
Years ago I would notice little old ladies who would come up to me in the grocery store and want to talk about something. Lately it seems like I've turned into one of those little old ladies, because I'm so starved for the sound of another human voice.
Another thing I've noticed lately is that sometimes when I get around "normal" life it's really hard, because then it hits me in the face how very bare and restricted my life is. A lot of days I do okay, because I almost get used to this life, but when I am painfully reminded that there is a whole big world out there, that's when it really gets hard to deal with.
I find it interesting that some of you say you hog conversations - I wrote a blog ( http://www.thealzheimerspouse.com/Motormouth.htm) just 7 months ago about me doing exactly the same thing - just as my lonely widowed MIL and aunt used to do. This morning I was working with the trainer at the gym. She is around my age (in MUCH better shape, obviously). Her husband has AD, and she and I were discussing how much we crave normal, stimulating reciprocal conversation - instead of one word answers and blank stares.
Joan--I so miss conversations, as you do. However, my intellectual stimulation now is primarily through reading. It's not the same, but I can keep my brain active and "escape" while at home. At a conference last fall I learned that people with dementia can qualify for the Library for the Blind and Handicapped, so I signed my husband up. He doesn't read or listen to books, but I do. They even sent a digital player (all free) and I can order regular or digital books on the internet and receive them through the mail. Cuts down on trips to the library and saves my precious "spare" time.
Joan -- I so totally agree with what you and the others have shared about the lack of intellectual stimulation. Even though in some ways I guess I get plenty of stimulation trying to figure out our finances daily, it's certainly not the enjoyable type. I also find myself starting conversations with salespeople just for a little interaction. I think the worst part for me are the totally silent car rides with my DH. He likes to listen to CD's in the car, but usually they are the same ones over and over again and he makes the same comments about the music over and over as well. So if there's no music, there's no conversation.
I do a lot of reading also, but lately have been a little bored with that. Too many romances and not enough in real life!
I also feel deprived of social interaction. All DH wants to talk about is how bad he feels. He can't follow TV shows and gets upset with commercials. He wants me to get rid on the commercials and he gets mad if I can't and then wants to watch something else. If I remark on the show he had no idea what I am talking about. Recently, he will not go out with me and has no desire to socialize. On Mother's Day he asked why so many people were there. There were 5 people there. Since he no longer goes to his morning program, I cannot even go to Walmart. I read some but he seems to resent that and distracts me with his complaints.
I pay a male CNA to come for 3 hrs every Friday afternoon. He supervises showers, takes hb for a walk through Wal-mart, visits w/him. I belong to 2 groups that meet on 1st and 4th Friday of month; so I attend those. On other Fridays, I visit friends, library, or sit in a park and read. When I can get him ready on time, which is usually okay, we go to church on Sunday a.m. Lack of conversation gets to me, but drives aren't so bad because then he can't get into anything. He's a wanderer and a "get into everything; move anything that's loose" type of guy.
Zibby, We go for drives for the same reason. Everything has to be moved....even if it is only 1/4 of an inch! He walks around the house and opens drawers, goes through papers, and empties cupboards. We will just get int he car and head out for nowhere. He whistles in the car but never the same tune that is playing on the radio! I too will talk to sales people and anyone else that will engage in a conversation.
Joan, i wondered how you did it. I was amazed that you could leave your husband for even a day. I do suggest Day Care. In fact, at Dicks Memorial last night, The administrator and the social worker from Day Care came to pay their respects. They loved him there, and I would never have made it through without them. they also helped me cope with the fact that he needed to be placed, BTW only 3 months ago. The support I got from his Day Care is immeasurable, and the freedom to even go to the grocery store. Consider it. freedom from 8 in the morning to 4 in the afternoon. You can reconnect with friends, go to the library, even get a part time job (to pay for day care), it's worth it. I started him on 2 days a week, moved it to 3, then to 4. We ate beans, but he was going to day care.... he thought it was a job, and that made him willing to go. Joan, my heart goes out to you. I've been there.
chris--I agree that daycare is worth every penny and all the convoluted stories some of us have to make up to get them there. My husband goes fewer hours than yours did (about 11 to 3), but it's still a great help. How wonderful that the staff was so supportive--that's the way it should be.
Me too, day care definitely made a HUGE difference in my life the last couple years. I know that not every LO is willing to go, but it is really worth fighting through some difficult first weeks until the routine is established. It took dh about 6 weeks to adjust to it and even then he never said that he liked it. But accounts from the staff were that he was well adjusted, seemed contented and cheerful. For the first six months he would get restless there in the afternoon waiting for the bus to take him home. Only after more that a year did I dare to mention in the morning that the van was coming to pick him up. Before that he would have objected too strongly and I would never have got him into the van. But he needed to go for ME and I never gave up getting him there.
Sort of on this line: I work now 4 days a week for 4 or 5 hours each day. For that time I am in the 'normal' world with occasional visits from hb and his AD world. Then I go home and switch back to the AD world where we all know there is little meaningful conversation and lots of repeating. I really enjoy working and glad I took the job, but I find I get mentally exhausted with the switching back and forth. Do others that are still working find the mental exhaustion too? I assume with time I will get use to it.