I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I would like your opinons - pro and con. I am hoping the blog may help others sort out their conflicting caregiving feelings.
Good, accurate thoughts. Well said. I've been saying "no" to some things, and sometimes feel a little guilty. BUT the resentment is building when I ask him to do things he's capable of, but he doesn't want to do them. He sits in front of the TV (but doesn't want it on as he can't manipulate the remote or understand if dialog is too fast for him to follow) and watches me vacuum, take out trash, use the snow shovel on the deck. He's capable of doing these things and does sometimes. I know he has no initiative, but if he can say "no," I can, too. :) Ah, well, this, too shall pass.
Good for you, Joan. If they can do it, they should. I really don't have this problem with DH. He always wants to know what we are doing "today". If I need to vacuum, I'll tell him and he always volunteers to do it - not as well as I would, but it gets done. He will take the garbage out if I ask, or almost anything else, as long as I ask him to. He doesn't have much initiative to do it on his own, but that's okay. I know what and how he can do things, and I take advantage of that as much as possible.
My DH has always , even in the best of times, been an opportunist... Ya know, get me this, get me that.. Before dementia, I'd hide a cookie so I wouldn't have to serve him, which would include fresh coffee to go with that cookie.. I'm one of those cookie on the go people.. Now that he's having all these problems, he is rendered helpless... I think , sometimes, he's aware of it all and the things I do, but his attitude is,,, not his job but mine... So, Thanks, Joan...I have been saying NO but WITH much guilt.. You've made me see that It is OK to just say NO because it IS good for him to perform small duties,,, Really, emptying the trash, collecting the mail from the box at the curb, sweeping the walk and garage, small duties that are not 24-7 jobs but anything is a help to the caregiver..Tempers flare, of course, but I've learned to live with that too.... To add some humor: when my daughter was 2, she loved to throw one of her killer tantrums... I'd send her to her room and park the Vacumm cleaner nearby, running,,, Worked every time... Should we get the sweeper out???
So far I don't have that problem. DH gets the mail, empties the dishwasher, takes the trash to the dumpster and will clean his bedroom. He can also get a sandwich and a cup of tea or coffee for himself. I really don't know where he is in this disease. The biggest problem was his paranoia and the 100mg of Zoloft seems to have taken care of that quite well. He has mentioned the paranoia thing a couple of times but hasn't gone on and on about like he was doing. I just don't know what to expect or when.
J doesn't ask me to do anything for him. Almost never. I just see where he's struggling, or making a mess, and step in as needed. I guess we've always both tended to be independent in that way.
I don't have this problem, because there is almost nothing my wife can do for herself. This morning I got a bit upset when she wouldn't eat her applesauce with the medicines, but with this I have to feed her if she won't do it herself. For meals if she doesn't eat I may give her one mouthful, "to prime the pump", but then leave her on her own. She never asks for anything.
My DH does a few small chores routinely. He also, on RARE occasions innitiates an activity, like making my lunch. I try really hard o apprciate his effort, even when it's only 10:30 in the morning. Joan is right, that if your LO can do something his/her self they should. I can say "No." but if he appears more tired or upset, I often don't. My daughter has always been good at saying "No" when it's been something he can do himself. She would ask me why I didn't do so more often. My answer was, that somnetimes it's easier to do the request than deal with the disgruntlement. Newest situation in this regard---He asks me to do something and on evaluation (if I am busy I will say "NO"), I agree. While I put aside what I'm doing and head in that direction, he has continued to that location and starts doing it himself. I comment, "I thought you wanted me to do that." He answers, "I'm doing it." or "I'm getting it started." and proceeds to do it himself. I could have continued what I was doing. He doesn't seem to know he's doing this. <grrr>
I always had the attitude that if he could do it for himself then he should and I insisted on it. This might have seemed hard on him to some people but I think he was better for it.
All through this disease I have watched other do for the person with the disease. I don't have a problem if the person is truly not capable. I even understand that in some situations that it is a better choice but the question is - do they lose abilities faster if we keep taking over doing things for them? That is the question I don't have a good answer for.
Now, he can't do for himself anymore but I can look back and say to myself that he did as much for himself as he could for as long as he could.
I don't have to much of a problem with him not doing anything yet. He does certain things around the house because of his OCD behavior from his FTD. He vacuums, makes the bed and handles his own snacks. But, if he doesn't want to do something he will outright refuse. Yesterday we got about a foot of snow and I asked him to help me shovel. Something he is still quite capable of doing. He said he didn't want to. Well, I nagged and nagged at him until he finally put his boots and coat on to help. He did minimal work and disappeared into the house--doesn't care at all about me doing it all. He would rather watch tv or pace around the house. This is why I put him in day care.
John is in a nursing home. I really can't remember what he ever did for me, to help around the house. Except that he liked to cut the grass. Usually ran all over my plantings and skinned the trees. Sometimes went to the landfill with my truck (scarey). God, you all with spouses that can help out, even in minute ways, are so blessed. John just lies there.
Has your husband been talking to mine??? I hear ya loud and clear! I am having the same sorts of issues..There are things my DH can do but doesn't or just won't almost as if it is one of these passive aggressive things. My buddy will, when I am up to my neck in cleaning or pulling weeds or something say " Let me take you to lunch" and this when I now need s shower! I say NO too and then suggest dinner...and remind him yet again I can't function on this short notice. And add how can I get all that needs doing if I am on the holiday routine? Like yours, DH will get up, have breakfast, read the papers and then watch TV. I can't stand to watch TV with him due to that d(*6 remote..It is so frustrating. On the one hand I hate saying NO because I know one day he won't ask and then later even be able to go out. It is such a double edged sword. You did the right thing..somehow we have to learn to set boundaries and I am in that position now with relatives who have actually use our house as a "visit" which really means bed and breakfast on the way to somewhere else..I have that this weekend and am mad at myself for not putting the ol boot down. I am developing the attitude not that if you are not coming to help out so I can have a break, we are not open for bed and breakfast..come visit but stay elsewhere. How mean does that sound? I could go on with my difficult day with his not recalling where the doctor's office is and my flat tire..he got there by guess and by golly..I followed him there as soon as I could but...and he does not think he has a memory issue to make things worse. Hang tough..
I have been telling my dh NO for quite some time now. I feel like others that as long as he can still do, let him. Of course there are times that he is feeling bad or extra bumfuzzled that day and I will do more for him. Since he is still cognitive we talk about this and he seems to agree so far. I am sure one day he may not. Also he is always asking what are we going to do that day and where are we going, much like a child. But he forgets the answers within a few minutes and goes on to other things. I do see more rebelling coming out of him about somethings. So far not because of me telling him no.
I do think that this is one of the ways that we can still be a caregiver and also prepare ourselves for our own future. We need a breather or two now so we can take a ddeeppeerr one later.
I had to learn that NO is a complete sentence and needs no explanation nor guilt. Most of the time, I just act like I don't hear him like he does with me.
Mine doesn't really ask me to do things that he can do. He will sometimes say what he will do that day to help, but ultimately forgets, and he really does forget. He can get himself something to eat but it is usually something sweet. He gets the newspaper in the morning, takes the mail out and gets the mail later that day. He will start to shovel the snow near the house so he has a pathway, but I'm the one who stops him, because of his heart condition. He takes out the garbage and trash every day. But, there are days when as soon as he takes his meds in the morning he will go up to lie down, come down to eat something, and then go lie down. Every night he asks me if we're going somewhere the next day. When I say no, he is relieved. I wish he was like some of your husbands, wanting to go somewhere. If he never had to go anywhere, he'd be happy. He's been keeping his room straightened a little bit better than he was, which is very surprising to me, because the clutter was really building up. Ultimately, though, I do pretty much everything. Lately, I'm afraid, I've been letting things go a bit and taking a day to do what I want, even if it's fooling around on the computer or even watching TV or reading. Figure it's wintertime - I'm entitled to a day off now and then.
Bev-- Even if it wasn't wintertime, you're entitled to a day off now and then.
Funny thing about all the stuff we have to do; it's always there when we get to it. Unless you have elves, the work doesn't do itself. And the number one rule is: WE HAVE TO TAKE CARE OF OURSELVES. If we don't do that, we won't be able to take care of any of the rest of it, including our LOs.
My furniture is well protected! Thanks all. DH will do anything he can to help if I ask. He wants to be helpful. These days its walking the dog. Even though we live in the country, my dog is an escaper and I have to keep him on a leash when we go outside. DH's frequency of taking the dog out is sometimes too much for the DOG.. He doesn't always want to GO..I have to think quick to redirect him into doing something else.
Carosi: I'm going to take your advice. You gave me some once before about this, and you're so right. WE HAVE TO TAKE CARE OF OURSELVES FIRST! I heard that last year when I went to a support group and each evening, before we left, that's what we said. I'm ashamed to say I haven't been living up to that advice, but I'm really going to try.
Bama - That's a good one. I'll have to tell that one to a friend of mine who doesn't ever have a speck of dust on her furniture.
Yes, it is so irritating when they ask you to basically wait on them - even tho they can do the task themselves!! I work all day, have an hour commute, come home and fix dinner and then my husband expects ME to bring him his plate or put it in the sink when he is done, bring him something to drink, bring him a napkin because he forgot to get one, etc. AAAGGGHHH. He can get it himself!! Many times I have been called the "B" word for not getting up and getting it for him - but sorry! I do PLENTY for him - last I checked his legs were still working. There! I feel much better....
The evening after I first read this discussion, DH and I were making pot pies. The big kind in glass pans. I first mix and cook everything in a big soup pot and then use my soup ladle to put evenly into the two pans.
DH didn't like the time it took me to use my soup ladle and wanted to dump the pot upside down in the pans.
I knew that the first pan would get more of the liquid and the second would get more of the food.
I firmly said NO that I would do it my way. He wanted to know WHY and was starting to get irritated. I said "because I want to." He is not used to me saying NO, as I always give in to avoid angering him.
He said, "OK, since you don't need me anymore, I'm going to watch TV." I said, "OK, I'll bring us in something to drink when I'm finished."
Funny, Mary. My DH now always wants to "help" me cook and I let him stir, or chop or whatever. However, he, too, wants to do things differently than I do them. And he'll get irritated when I tell him "no, this is the way I do it". He will then say - "there's only one way to do it - your way" - then I just say "yes". Again, end of conversation.
My husband never asks me to do for him.He always wants to help me do my work but is so slow. What I don't like is he wants to do the dishes and he is not careful so things aren't as clean as they should be,he thinks I am into sanitation too much,his Mom was a slob and I nev er liked to eat there,but he does hang out the wash and vacuum for me so I guess it evens out.Dirty dishes,clean house.Since he retired 15 years ago(age 55) he has helped me alot,he traveled in his work and I had to do everything and he wwants to make up for it,so I guess I'm really lucky in a way.
In reference to eliminating the guilt feelings that come from not putting a spouse's desires first can manifest itself in more than just routine tasks.
I love a good BBQ dinner. She has always hated BBQ and the 4-5 times in 20 years of marrage we ever went to a BBQ restaurant she was never happy. Then one day I decided "no" longer, I like BBQ so THAT Is where we are going to eat and I was not going to feel guilty about it.
Surprise! She has forgotten that she hates BBQ and enjoys the meal each time. :-) We have had more BBQ in the last 2 years than the previous 20 . . . . . 100% guilt free.
Maybe there are some advantages to this forgeting thing that havent been exploited yet?