ehamilton, our husbands are in the same place - except my husband takes his clothes off in the bathroom or bedroom! <grin> He still will pick up anything that is left out of place and carry it around with him until we ask him for it so that we can put it away. His shoes tie, and several times a day he will untie and retie them. I think it is in order to remember how. His houseshoes are mocassins with a tie as well, so he has two pair of shoes to practice on!
I let him do all the chores he wished at first. I didn't try to help. In fact, when he got to where he couldn't do something, I would wait until he went to bed and fix it, and he would forget by morning. The laundry was the first job I had to take back (for the sake of my wardrobe!); then the vacuuming (after a $200 repair bill); then the dishwasher (we reloaded it for 6 months after he went to bed before taking that task over); then dusting (after losing two souvenirs from our trips).
The only chore that he still attempts is to make our bed. I make sure to straighten the bottom sheet and pull the covers up, so that all he has to do when he goes back to make the bed is remove the pillows, straighten the covers to the headboard, and put the pillows and shams on the bed. (During the night he kicks the covers off his side of the bed and can't figure out on his own how to fix them back - and so by "helping" him, he maintains the illusion of "making the bed."
Just about the only thing my wife does now is "help" me make the bed. I do everything else around the house while she sits and watches or sleeps. For the past couple of months she has been fooling with her engagement ring (diamond), taking it off and putting it on her little finger. Two days ago her caretaker while I was at a meeting told me she had been fooling with the ring again. Yesterday she again took it off. At this point I decided that if she did it when no one was watching she could easily lose it, so I took it off and put it in a small box in her jewelry box. She still has the wedding ring which she can't get off. Interesting that she has not commented on the absence of the diamond. When she was fooling with it she commented that she was doing this because she wanted to be sure she still had it. This is a problem peculiar to the husbands on this site since men don't generally wear engagement rings.
Marsh, if she asks about it, and wants it back, could you put it on a good (sturdy) necklace around her neck, so that she could touch her ring and look at it without taking a chance of her losing it? The necklace would have to be one she couldn't pull over her head though......
Marsh, I can sympathize with your wife and her moving her ring around because I find myself doing that also. I have always been afraid I would lose my engagement ring and have always kept it on, even when kneading bread. When I was first married I had a graduation ring I wore on my right hand and one day I took it off and laid it in the window sill. Last I saw of it. I have small knuckles and have lost rings off of my other fingers, they just slip off. One was my mothers engagement ring which I had had the jeweler make smaller to wear as a pinky ring. My husband found it on the kitchen floor one day. I lost a nice opal ring one day while cleaning out a cabinet and never did find it. So countless times a day I find myself feeling for my engagement ring to make sure it is there.
I would agree with your decision and I would NEVER give it back to her. It would be nice, if she asks, to pick up a similar cheapie ring if you want her to wear it around her neck, but I would never give her back a expensive ring because I want to pass those things on to my daughters some day. It might be a good idea for some of you others to substitute a cheap ring for an expensive one because you wouldn't let a 4 year old have expensive jewelry and your daughters would likley treasure it some day.
I think because of the way my parents raised me, in relation to the effects of my disability, I am now dealing with my DH in a similar manner. He has chores he does, and I don't help or do them for him unless he's having a really bad day--out of commission. He feeds the cats, gathers the trash bags and puts them on the porch the night before pickup. He makes 99.9% of all coffee. To name a few things. If he's going away, he'll put on his jacket and zip it, but if he has trouble, he'll come stand near me and wait for me to notice him. I've caught on, that he wants me to get the zipper started. I just do it. Sometimes I'll comment that anytime he needs help he can just let me know. Invariably he'll tell me "I tried (X) times, and it just wouldn't work."
I very seldom just do things he normally does, because he will stop doing them COLD.
At the same time I make a point of asking his help with things (of course, things I'm sure he can do). It is important that he feels needed--a part of things. Asking him, "Would you like some help?" or lightly praising his efforts to do things is important too. I try to avoid the "Here, let me get that." "Here, let me do that for you." Those can really irritate and/or hurt.
Carosi - I do the same. I was helping him with his shower before the coconut oil, because he was having trouble with the faucet, shampoo and rinsing (the whole thing). He started doing a little better, so I just basically keep an eye out that he closed the shower curtain and turned the water off. He will call me when he needs something. I noticed a time or two his hair was not wet or there was some soap still on him (baby wash works good in this case). I helped him dry as needed and he started seeming like he was getting the job done. At least the towel is wet. Anyway, he religiously does his shower ever evening so I am satisfied. Now he does it all and dresses himself, after parading through to the bedroom naked. I have found he can usually get his colored t-shirt on himself because it has more body. Can't do the white undershirts. I have the hot water turned down so he can't burn himself. He can still put his shoes on and tie them. He couldn't do his shoes 3 months ago.
I have started asking him to set out the bowls and cereal. Silverware and get out water and ice. If I tell him more than one thing at a time he can't remember. He remembers his pills but I put them out of the weekly containers into a small cup for him to take or he might take the bedtime in the morning. I wait for him to fasten his seat belt. Let him get in and out of the car himself. We start early and move in slow motion. He is getting more wobbly on his feet but he won't even think of using a cane.
Mine LIKES to be babied. I help him lift his legs up onto the (hospital) bed, and tuck him in. Tonight I said, please lie back down so I can tuck you in.
Sure, he said. You said Please. Remember what Captain Kangaroo says: Please and Thank you are the Magic Words.
Andrea kept losing weight, and was finally able to get her ring off easily. She would take it off and play with it. Then it would disappear. The NH found it twice, and asked me if I please wouldn't take it home. I said NO! It's her ring, and her ring to keep or lose, and by God I would not be the one to take her ring from her! We promised better or worse, and that ring was our vows...you get the point.
Then she lost it again. It was gone. And I was very sorry. The next day, as a napkin was about to be thrown out, the NH caught the ring, where she had wadded it up. They begged me to take it home. And I did. And I am very glad.
An option is to take it to a jeweler and have them put a spacer on it to make it smaller. Cheaper than having it resized. Or just wrap tape on it. I don't blame you for not wanting to loose it.
My wedding band was stolen in 1990 when our house was broken into by a neighbor kid. I couldn't wear it cause I was a cook and the constant being in water caused a reaction. Never have replaced it.
We have the same problem with rings that Marsh does. Periodically DW discovers the rings are not there and panics. I give them back to her and everything is ok. I put tape around the diamond to make it fit tighter. That became a problem when taking pills. To her it looked like another pill. She would keep picking at the tape. Meanwhile the other pills we disolving in her mouth, making the pill taking a negative event. Pill taking is becoming dicey enough as it is. Ah, the law of unintended consequences strikes again. Now, when things are calm, I suggest that we put them away for safe keeping. In a couple of weeks, she will discover that they are gone and we do the dance again.
Ikincaid and Zibby, I am feeling a lot of guilt but not quite for the same reasons yall are. I can so relate to the statements you mad Zibby about the caregivers having to be understanding and make things like nothing happened wrong. I am not doing so good at this right now. For days I will do good and then I will stop holding my tongue and say something negative and my husband, Rodney, will get all upset. My husband who is 53, has EOAD. We have been together 35 years. Out of all of our years together, this is by far the hardest thing we have ever had to endure. He has always been my best friend, we have enjoyed being able to talk and communicate with each other, we love being together. Now, I can't say that. Rodney is in stage 5 of this disease. Zibby like your LO he is still high functioning, but the memory and speach is not so good. He has problems with his attention span, remembering conversations, where things are both at home and when we go out in the car. For the most part I really do understand this behavior is the disease. But not all of it. I also feel like I am through no choice of my own, expected to be at my husbands beck and call and make all of the things that are either being done wrong, or simply forgotten, to not be noticed. As long as I don't mention any of these things everything is fine. It is not fine with me. I feel totally guilty because so many of you are so accepting. I really need someone to help me. Today I had to hide the keys to my husbands truck because he feels like if he leaves it will be better for all of us. To some extent I agree, but we all know that is just a really bad idea. I love this man with all my heart and I know this sounds very cold and horrible. That is what this disease is doing for me. It is robbling me of my feelings for the man of my dreams. Can someone tell me how I can handle this better? I would appreciate it very much.
mammiejammie, you are not exptected to be a saint. you will do what comes normal and sometimes that means exploding:) not one of us here is not guilty of doing the same. i remember in the early stages of the having to be the reasonable one, well- i wasnt always so reasonable or nice. quite frankly i didnt know how i could even like DH anymore with all his antics and misery he put me thru emotionally and physically. today 9yrs+into this horrid nightmare, i can really see a difference in how i matured and became a much better caregiver over the yrs. they didnt come lightly. many rounds of pulling hair and screamfests on both sides over the tuff issues like driving and flying planes. as i sit here and look at him i tell you i love him so much and he is quite the hooligan still and gets into all sorts of trouble, but the childlike behaviours and talking to himself in the mirrors are what make him so endearing at this time. lots of not so pleasant issues too- but i try to overlook them now as i know my time is marked with him and only too soon i will have to rely on memories and pictures to remember how it used to be. i am sure with time you will be able to say the same. its a difficult road and many bumps along the way. in the end you will look back and say you did your best at the caregiving and that will be enough - remember you are not alone and we are here to help you thru the tuff parts. divvi
mammiejammie-your loving husband has already left you. In your mind you know it is the disease but in your heart you see your husband. Nothing will ever be the same and to protect yourself you will start to pull away from him as a self protecting mechanism. Don't feel guilty about it. We are all devastated as we lose our hopes and dreams. Who but we can understand what you are going through.
Your emotions are the reason I started this website. They are shared by all spouses. Please log onto the home page - www.thealzheimerspouse.com, look on the left side, and click on "previous blogs". All of your feelings, doubts, guilts, everything is there - I have experienced and written about all of it. I'm still experiencing all of it and trying to work through it with the help of everyone on this board. Skim through the topics and read the ones you think you will relate to most, but I would suggest starting with #1, 2, 12, 16, 23, 32, 42, and 60. Because they are the older ones from 2007, some of the links have not yet been updated, and the pages may load very slowly. Be patient, and they will eventually load.
If you haven't had a chance to get acquainted with the home page, please look through all of the topics on the left side - there is a wealth of information there.
I thank all of you for your kind words of wisdom. I do know this too shall pass, but it is so hard right now. I would think this would be the easier part because my husband is still very independant. But it is not...... I can see where it will be easier in the future with more experience under my belt. You know, we have been caregiver of our youngest son for the last 15 years due to a head injury he had. He will always be in our care. But this is by far the hardest hardship that I have ever endured, the loss of someone I love so much. It would be easier if the body left with the disease. Not that I wish him gone please understand. But it is so hard to see our life as it was gone, and the body still here. Again, thank all of you, God Bless
I found it helped to read the "understanding dementia" article over on the left side of Joan's front page. You come to realize that you can no longer hold them accountable for actions than you can a two year old. Not too long back we coined a term for it: the giant toddler. You can't reason with them. You can't say, MY turn now to do something. Knowing that may let you just relax a tiny bit into being caregiver of a child again. That helped me a lot.
mammiejammie1, the article briegull refers to also helped me. If you haven't read it, please go to the home page and pull it up. It's quite long. You may want to read it a section at a time or do what I did and print it out. I've referred to it several times since printing it out.
I also am going to second reading that article. Try to ignore the first page where the author is trying to apologize for writing a paper that can actually be read by caregivers. Once she gets over that, all of the information is accessible and extremely useful.
I personally think the early stages of this disease are the hardest for a caregiver, especially a spousal caregiver, to deal with. It is the end of all of your hopes and dreams. Dementia, any kind of dementia, is a long term terminal illness. They never get better, just worse. And it is in the early stages, when things are almost, but not quite, normal that you have to get all of the legal paperwork, including some you won't even think about until later, under control. And just having to do that hurts.
Also, in addition to all of the more obvious problems with caregiving a dementia patient, you are losing, or have already lost, your main support for most of life's difficulties. Don't think that the early stages are easy because they are not.
Starling I do agree with you about the first stages being the most difficult. I didn't have an inkling about what was causing these horrible changes in my husband. Was our long marriage coming apart. Was it something I did or didn't do? Then comes the guilt-in hindsight why wasn't I more tolerant. Was there something I should have done? Now I realize the disease is relentless and will progress no matter what I do.