Does anyone else get exhausted from having to plan every single detail of the day? Trying to find tv programs he'll watch, even though they don't interest me, trying to find things to do that he'll say yes to so he won't just sit around. I know I'm not supposed to feel that responsible, but I can't help it. I feel so programmed. He's doing well on the Namenda and Seroquel, but the short-term memory and executive function have shut down and the little details I've just taken over seem to add up to so much.
What?? You mean that you PLAN every day?? I wish someone would have told me that. All this time, I thought I had to "wing it", and fly by the seat of my pants.
I know how you feel. Everyday I try to find something he will do. It's easier when the weather is nice but while it's cold it's harder. I'm signing him up for day care this week. I hope it goes well.
I know what you mean PrisR, but I've given up. He can't follow much on TV, can't use the remote, and doesn't seem that interested at all UNLESS I'm sitting in front of the tube, too. This winter he walks outside a little if the weather's half-way decent, walks around inside or sits at his desk "to take care of business." ?Whatever that is? If there were a day care here, I'd see if he could attend as a "helper." Tried board games. No go. So now, he can do whatever he wants--or not.
They don't have the ability to "self initiate", so yes, that is a good description of us - social director. We wives set up the Monday card game for the guys. They love it, but who do you think does all of the planning and calling? One of the wives set up the transportation and supervision for the monthly outing they go on. One of the other wives looks in the paper every week for outdoor events (Which is easier here in Florida all year round than if you happen to live most anywhere else, except Southern California) and takes her husband at least once a week.
Somedays, I admit, I let him sit in front of the TV all day. I figure if I get him out doing things with his Alzheimer buddies at least twice a week, and we go out as couples once a week, that's pretty good.
At this point my DH falls asleep watching TV, so it does not matter what is on. He likes his once a week day program, church and getting the mail. He is obsessed with the mail. Most of it is junk. It is hard to have a conversation. If someone calls I ask, what did they want. He does not know. He does not seem to care.
I too feel that I am the social chairman. I have found that my DH does pretty well with two activities per day: grocery shopping, running other errands, Church on Sunday, attending an occasional movie, etc. He always asks if he can do something to help me. I have designated him the official salad maker. I get out all of the ingredients, cutting board, knife, and two salad bowls. He will chop and assemble to his heart's content. We live in central TX. If the weather is 50 degrees or warmer, we take a 20-30 minute walk most days. I find that a little exercise and a little socialization does wonders for his sense of self worth and well being (and mine). He is getting sleepier - takes a nap every day after lunch; to bed around 9:30 and up at 7. If he has no activities, he will nod off in a chair. He is at stage 5.
Mine does exactly what Zibby's does, to the letter...with the slight exception that "taking care of business" means reading the same 3 investing books over and over again. (they've got yellow highlighter in the darndest places.)
So, mostly I just let him do it, until it's time to run errands and go get some lunch, and we do those things most days as a way to get him out of the house.
We're lucky to live in a great retirement facility in an independent living apartment. There's a fulltime fitness dirctor and he goes with me most of the time to the balance and stretching class that meets three times a week. He can still drive to nearby places where he knows the way and runs over to Publix at least three times a week to buy bananas and muffins. (A grocery list is beyond what he can manage. I once asked him to buy unsalted butter and a gallon of milk and he came home and said the store doesn't carry unsalted milk.) There's a men's breakfast once a month wih inteerestng speakers but he refuses to attend. The result is that after almost six years here he knows very few people. We sometimes take in bus trips to nearby functions with groups from our place and there are programs in the auditorium from time to time. We always sit by outselves in the dining room, both at home and on vacations, since the socializing with others doesn't work well. I guess the evenings can be the hardest, just tv ad more tv and I watch whatever he seems to be willing to watch. I draw the line at all the MASH reruns, tho, and come in here to the computer. Same goes for 20 years of reruns on the Sat.nite BritComs
buzzeline, you hit the nail on the head, "thinking for two" ... yes, that's what keeps us on our toes and you know what? Standing on tippytoe gets you tired pretty quick.
My DW can’t do much of anything anymore and if I don’t plan something to do, she just sits and dozes or goes to bed and sleeps. I feel guilty for not providing more activities for her and or us to do. She will ask to help me and will do one thing at a time if I show her every step. This is all so very exhausting!
Yes, I guess 'guilty' is the way I feel for not being able to come up with more activities. It seems we're all running as fast as we can to stay ahead of this disease, even though we know it's impossible, but if we slow down we think we're going to fall behind and their slide will come faster.
I am as "guilty" as the next one at feeling "guilty" because I can't provide activities all day every day, but that is only making me angrier at the situation. I have come to the conclusion that I just can't be everything, everyone, and all omnipotent to my husband every minute of every day. I mentioned in a post above, that if he has an activity to attend at least 3 times a week, it's enough for me to say I've done my job. I'm tired, and I haven't even gotten to the difficult physical part yet (Handling the ADL's).
So I am sitting here at the computer at 2:30 on a beautiful, sunny day in AZ.He is re-reading the same paper. This morning he fell asleep at the kitchen table. I let him sit there.Yesterday, we went for a walk by a lake. He said he'd rather be home, reading. So we went home. Today, I am not planning anything because i am angry that he doesn't appreciate anything I do,anyhow. My daughter is having her in-laws over for dinner. He won't go. I am stuck here.I simply cannot be the driving force all the time.I feel like going to my daughter's house and leaving him here alone. He will be safe, but not happy to be alone and I will hear about it when I get back.He sometimes calls his son,complaining about me if I leave him here alone.Phyllis9
Guilty. That's how I feel a good part of the time. But, then again, what should I feel guilty about? I'm here almost 24 hrs. a day every day of the week; I fix his meals; make sure he has clean clothes and a clean bed to sleep in; keep a clean house by myself; etc., etc., etc. Still, he is angry at me a good part of the time. I realized just this past week that he can't understand when I'm making a joke or being a little sarcastic, fooling around with words like we used to do. When I do it, he gets so angry. He walks away and is mad for the rest of the day. Then I feel guilty for saying the wrong thing, which I didn't mean to do. I get so tired of feeling guilty.....
Bama: I'll try. You're right. Guess I'm in a funky mood right now. The weather is not great here, I suppose that's part of it. I don't feel this way all the time, thank God. Most of the time I'm more positive. DH has been going through a rough pattern this past week and a half, that's probably why I'm like this. But, it would be so good to be out in my yard soaking up the sun, impossible to do here with the weather as bad as it is.
GUILT: For those of you who feel guilty? Do you really feel guilty or do you just feel you SHOULD feel guilty? I don't feel guilt at all. Sometimes I feel like there are times I should but I don't. I have gone above and beyond what most people would ever expect a person to do for them. Certainly no one will ever in my lifetime do for me what I have done for DH. Not complaining about it. Just a fact. We separated for a year mid 90s and got back together (and I'm glad we did) focusing on our history together, the security of having someone to "be there for you in your old age," our ability to enjoy travel together, and mutual interests. And now soon there will be no history, and although he has me I will have no one there for me when I am older and/or have health problems. (currently 58 going on 85) I am really proud of the life I created for him after diagnosis and know he has had some wonderful times in this new place and situation. And DH has said how grateful he is and that "I have saved his life" as he puts it.
As for me, it's been stressful and exhausting and lonely. A few good times. Much dark depression. I feel bad sometimes that my depression takes me "away" from him some of the time but not guilty.
From the thoughtful and caring posts I've read from you all, I doubt any of us has reason to feel guilt. Wouldn't you each love to know someone like you would be there for you when the need arose?
Now I do feel guilty about all the calories I've been consuming over the past three years, just so you know I'm not guilt immune.
Terry--thanks for what you said. You are right. We caregivers have no reason to feel guilt over something we had no control over. We did not cause this awful disease that takes our LOs away from us. We do the best we can in caring for them and planning their and our own social calendars; and it definitely is exhausting to be responsible for it all. But maybe what most of us feel instead of guilt is extreme sadness over what is happening to our once "normal" lives. We wish we could somehow change the situation we and our spouses are in, we want to take away the pain of it all, but realize we can't.
Does anyone else get angry because life becomes too limited.? I find it difficult to plan activities that DH is comfortable with. Yesterday, after being cooped up for three days due to bad weather, I took him out to lunch, just to get out of the house. Even that seemed difficult. He gets confused with the menu, so, I order for him. There is no conversation, except to ask where the restroom is. I don't feel I can take him to movies, because, in the middle, he'll have to go to the restroom. He would never find his way back unless I go with him. He no longer wants to travel. He reads the same part of the newspaper over and over and falls asleep watching TV.
I know I have been thinking for two for awhile now, but sometimes I'm drinking for two, it's my escape seometimes. I am fortunate to have an optimistic attitude most days, but I can see how easy it would be to slip into dark depressions. Sometimes this website scares me when I see our future in some of your posts.
maryd, there was a period of several months where he wanted to go to the bathroom during the movie, but it passed. Now he's in Depends anyway, and doesn't try to get up, and I can take him and give him a bucket of popcorn and I can enjoy the movie. No conversation, but I have to get out of the house!!!!
I took him to Olive Garden Sunday night, held his hand for his balance from the car to the table, and helped him into and out of his chair. I ordered soup and salad for him, which he always loves there, and after I put the fork in his hand, he ate his salad. Then I gave him his spoon when the soup came, and he finished the bowl. So that evening out was successful too. I have to gauge how he is doing and make last minute plans now. Some nights I wouldn't chance going.
This is all a part of our lives FOR THE MOMENT. I keep saying I've got to be flexible, and it has become my middle name! <grin>
We do what we can, when we can and I, for one, am grateful for it! I also know that AFTER, I'm going to wonder how I got through all of this and kept my sanity.
hmmm the future surely doesn't include anything I had planned on doing after retirement,fishing,hunting,casinos,rummage sales,car shows,so I find myself planting more an more flowers an hoping I can have the time to take care of them,never figured an hour alone would mean so much
Terry - I do feel as though I'm giving my all to him. He is very lucky to have me. You're right. I'll have family when he's gone, but there probably won't be someone with me 24 hours a day! I guess I feel the guilt when I get angry at him, which most times I try to hide. But when I feel that, I think, "He can't help it. It's the disease (this is the mantra I've been told to say to myself) and that's when I feel the guilt, thinking I never should get angry at him. But, a person can't really help what they feel, right? Most of the time I'm on a pretty even keel, but there are times, especially in the last 2 weeks when I haven't been. That's what I feel guilty about.
My DH has FTD. Have any of you noticed that you can't even joke with them anymore? We used to joke a lot, but now he takes everything so seriously.
Is it that he takes everything so seriously or that he just doesn't get the jokes? My husband's thinking is now absolutely concrete, and that is how he takes jokes, which are usually full of abstracts and subleties, so doesn't get the humor.
Example: My friend's husband has FTD, so he does not drive. However, he used to be a State Trooper, so as my friend says - try driving with a former State Trooper in the passenger seat and see how much criticism you get. Anyway, she was joking around the other day, and said that she could get 5 traffic tickets before she even gets out of her driveway. My husband looked at her in all seriousness, and said - "Does your Home Owner's Association have strict rules for driving in the driveway?"
My husband has FTD and can't be joked with either because everything is black and white. No abstract thought at all. I once said to him "when it rains it pours" and he looked out the window and back at me and said very seriously "it's not raining out". I miss his old sarcastic, smartass self. I could never stay mad at him because no matter how angry I was he could make me laugh.
He also cannot hold a regular conversation as his language is impaired especially his nouns and tenses. He makes pronouncements about things, no discussion about anything!
I just did the intake paperwork today for adult day care and had to make sure they knew he took everything literally and had language problems. While I was doing the intake, they took him to get acquainted and the group was doing some cognitive activity with words--when they would ask him for a word he just said "no". He didn't seem agitated by not understanding. He will go on Friday for his first day without me there. I'm worried he will be upset when he figures out I'm not staying. Wish me luck.
The social director at the ALF also coordinates activities for our Villas, but she was fired. January's casino trip was canceled because of it. Sid was pretty upset - he looks forward to that trip. Supposedly, they hired someone new, but I haven't met her yet. He still won't go over to the ALF for any activities, but he likes the Villa trips. I hope they continue them.
This month's Alzheimer group trip is to a railroad museum. He'll like that.
Today is one of those TV days that I said I won't feel guilty about, but I do. I am sick of guilt.
Joan - Does Sid joke around with other people? Mind does. He was joking and talking up a storm with the people he knew at the polling place yesterday. And, he was doing a good job, I must say. That's also what I don't understand. When we're out like that, he is very outgoing and is glad he's out, but I cannot get him to go out to a movie or dinner. He just doesn't get my little jokes. He gets angry and starts mumbling under his breath (that is, if he doesn't shout).
As far as the feelings of guilt, right now I feel guilty because I'm talking about him and he doesn't know it. When he comes upstairs, he'll ask what I'm doing and I have to make something up.
Deb - My husband isn't as far along as your husband must be. He doesn't have those language problems. I do hope your husband does well with the day care. I know that right now mine isn't in need of that (but I probably am). But, I really can't honestly say I would want him to, he would be so upset. I think what I'll do is get someone in come spring, someone to keep him company so I can go out and get some respite and maybe that person will do some light housekeeping too.
No, but he's never been one to joke around with others. He's always gotten a big kick out of teasing me, which I have hated for 40 years, and for 40 years, he has ignored me and done it anyway. He still does it.
I used to know everything he was going to do or say. I could "read him like a book", as the saying goes. Now I never know what to expect. It's exhausting.
Oh Joan, that sounds so familiar. Mine was the same with me, that's why I questioned it here. I miss those days. Everything I say is taken so seriously. It IS exhausting, always having to go along with their moods.
From what I understand not every person with FTD will have language problems. My husband has greater atrophy on his left side which I was told holds more language. His first symptoms were not language but personality/behavior changes. He is still able to take care of all his personal needs, can even make himself a sandwich if he wants, makes his kool-aid when the pitcher is empty, makes the bed every morning and vacuums when he wants.
I didn't think my husband was far enough along for day care either, but his neurologist suggested I try it while he is still sociable and likes other people. He has become a back patting, huggy person with people he likes. He hugged the guy who does the cooking at the day care today while I was filling out the paperwork. He was agreeable to go, so I went with it. He is a veteran so the VA is paying for most (hopefully all) of the daycare. As his neuro said to me, try it for my sake and if he doesn't like it, try again later.
Deb, My husband's first symptoms were the personality/behavior changes as well and is able to take care of his personal needs, can fix his own light breakfast and a sandwich, as you said, but has to be reminded to change his clothes or take a shower (is mortified if I even so much as suggest this), tells me he's not a slob. But, in many ways, he's not as sociable as he used to be in another setting. The polling place was one thing and restaurants are another, but to go to a wedding or party, no. He's already saying he doesn't want to go on our annual vacation next summer, something we've been doing since the kids were little.
But, I don't think day care, for him, is ever going to work. I believe once he got there he would probably like it, but the problem would be getting him to go. Getting someone in the house will probably be the best.
My husband is also a veteran. I'll have to find out if VA could pay for some of this. Didn't even think about it.
With so many physical and mental abilities changing with dementia i think its a good thought to keep in mind that what our spouses didnt like before they may find agreeable later. many here including myself find spouses like foods they would never eat before! or become huggy and affectionate when they were rather standoffish prior. so following this theory it is possible that the daycare notion will work earlier than later as well. its the way you introduce them to it i think thats most important. i am sure looking back now it was more me than DH. i couldnt fathom the daycare options at that time. but now i wish i had taken him for more social stimulation with others that arent judgemental. coming to terms with the idea before its actually needed, and that its going to be a good source of enrichment for them and some respite for ourselves will make a big difference on how accepted the idea can become. divvi
I agree. I didn't think my husband was ready for day care because he is so self sufficient, but the doctors all kept tellling me I should try it now. Well, it took my sister (who's an RN) calling me and giving me all the numbers to call to check it out with the VA, Dept of Aging, etc. before I did anything. No excuses that I would look into finding the numbers. I don't think I would have thought about doing it until I felt he needed help and then it would have been much more difficult.
I told my husband that it was like a job for him and the VA wanted him to go. He is not aggressive or angry but quite easy going most of the time. He does have a stubborn streak that can come out but he doesn't react badly. He just says "NO" and pretty much turns into a statue that you cannot get to move. I usually ignore it for a few seconds, he gets over it or forgets whyhe was angry and then usually goes with the flow. I hope he continues to enjoy going--he does like to help people still.
I can't give him the stimulation he needs at home. All he will do at home is watch tv. I always take him out in the afternoons to do something even if it is just to go to the store. At the "center" they do active and cognitive activities that I know he would not do for me here at home.