I feel like we've entered a new phase. Yesterday, the director of DH's day program asked if I wanted them to give him a shower and shave. I know they're trying to help, and I felt greatly relieved that this "service" is available to him, but part of me felt embarrassed too. I figure, he must have smelled bad and that's why they asked about whether I wanted them to give him a shower. Maybe I'm being oversensitive, but it's hard. Then this morning, I was running around like usual, getting the 3 kids ready for school/daycare, arguing with my son, going nuts. I couldn't get DH to change into his jeans, no matter how I tried. I ended up putting his jeans and sweater into a bag and taking it to the day program. (He did put on his shirt, although it turned out he put it over the shirt he was wearing, and he on had his sweatpants he sleeps in, so I could take him out of the house like that.) I told the nurse I couldn't get him dressed and needed them to do it. I felt like an idiot. DH was mad, I could tell, probably embarrassed too. I felt awful. I feel like I'm seeing him deteriorate by the week now, never mind the month. Getting dressed wasn't this big an issue even a few weeks ago. It's scary and frustrating. I keep wondering what he'll be like in a year, I know I shouldn't, but I can't help it. He probably won't be using the bathroom by himself anymore. I feel like running away today. Anyone care to join me?? arrrrrrgh!
Yeah, I understand. It's just where you are in the scheme of AD. I'm not there yet, but got a hint of it when, a few months ago, my sister-in-law told me that she'd noticed that J wasn't always looking "fresh" last time she'd been in town. (I don't mean to imply that she said this in an accusatory or unkind way--not at all. I'm fortunate that family has always been only helpful.) Anyway, I'd been aware of this myself, and try to take note of how often he showers and whether he's changed shirts. Because he tends to wear the same one for days at a time. Fortunately he doesn't usually smell.
Oh Kelly, I hear you....I remember those awful times only so well....sometimes I had to cut the clothes off of my husband and chase him around with a spray bottle to get some of the "stink" off him. It was the worst time, I think. He was always the most meticulous of people and to see him in that condition was heartbreaking. I wish I had some words of wisdom or something that would make it all better, but I don't. It is scary and the frustration and anger that I felt was overpowering....it was one of the situations that led to me having to find a place for him to live. I am not proud that I "caved", but it was too much. Was the day program personnel able to get him to shower and change clothes? If so, that will help you immensely. Unfortunately, my husband was an uncooperative with them as he was with me.
Please know that you are not alone....I wish I could help....
And, yes, today I do wish I could run away....my husband is lying in the next room dying...he has not eaten or drank in two days and I know that the end is near....I feel terrible but I wish it were over so that he didn't have to suffer anymore....
I am so sorry you have to deal with these issues when having to deal with younger children. This is so difficult with grown children. You handled the situation very well. I established a routine for my husband to shower every morning when I am getting ready for work becuse he was not showering either. Now it's a routine. I have to lay out new clothes every 2-3 days because he won't change the jeans or shirt. If I am so sorry you are having to deal with this with school aged children. My husband was diagnosed at age 58 2 weeks after the youngest daughter graduated from high school. I find mself always wondering what this nightmare will be like in a year. Everyday I have to really concentrate on staying in the present and it's really hard to do that. You are not alone. We are here for you. You are in my thoughts.
Kelly, my DH is at the same stage. When I suggest for him to take his shower he says," I allready took one" and he will not ne persueded otherwise. I'm his only caregiver and have finally heared from the VA that they would come twice a month for six hours to give me respite, she also ask me if I wanted some assistance to bathe him. This is when I told her, yes IF they could get him into the tub. I hope they haver better luck then me. He wears his same clothes every day too. I have to take them away at night and lay out fresh clothes, and since I have to help him get dressed he usually doesn't say anything about it.
I'm not having showering problems yet. There were dressing issues, including not changing as often as he should have.
I do lay out clean clothes every night for him before I go to bed. It started mostly because he was always feeling cold. Now that he is dressed right for the weather he can handle putting the sweater on or off depending on how he feels. The basics are done. If I forget he comes to tell me that he needs new clothes for tomorrow.
He is still mostly at a mild stage except for language skills. But like everyone here, there have been enough bad days that I know what the future holds.
I am beginning to have some of these problems with my wife. The only way I can get her to shower is to go in the shower with her. I tell her that we both need to shower. This works about once or twice a week. Usually I supervise her getting dressed. This morning she got herself dressed while I was in the shower. When I came out I found that she had not changed her "Depends" or put on a bra, so she had to start over. There is one skirt she insists on wearing all the time, even though it is tight on her.
I sympathize with you all in your struggles. Fortunately, so far my wife doesn't object much when I tell her what to do, but I know that can change.
My DH always tells me he just showered, or he showered yesterday, etc. If I can get him in the shower once a week, and shaved, I feel like I did my job. As for clean clothes, unless we are going out, he stays in his PJ's, from one end of the week to the other. But you know, you've got to pick your battles. I've found, if we have a dr's appt, or dentist, he will shower. And now, I write on the calandar when he took a shower, and when he will again, like a date. We'll see how that works.
I totally agree about picking your battles. I decided that I wasn't going to fight the hearing aid battle, for example. I'm not sure about the tooth brushing battle. He was using a battery operated tooth brush. I tried that kind myself and hated it. I think he might be having problems with the vibrations that I couldn't handle myself. I've put out a regular one for him, but so far he hasn't used it.
I also like the strategy of logging when certain things got done. I have memory issues too, after all. <grin>
I read that smell is an early casualty to this disease. When I suggest that a shower is a good idea, she says she does not stink and I argue with her. We get it done if I persist.
Grooming is not what it was of course. She asks for my advice on clothes, a subject I am ill equipped to handle well. When I don't like what she has been wearing, I make it go away. Then I buy something to take it's place.
We have a dear friend who runs a hair salon that we have known since the friend was a child who cuts Miriam's hair a couple times a year. Grooming is problematic however.
Yes Dave , Grooming can be a problem..... Just in the last few months I have started to assist more with her cleanliness.. I help her get prepared to take a shower.. I wash her hair.... I also have to assist with clothing for the day and sleepwear.. The biggest problem is she also has EBS ( irrital bowel syndrome ) (spelling) , somedays she will go to the bathroom 3-5 times in the first few hours when she wakes in the morning which when she cleans herself she wants to wet toilet paper and clean herself... I have worked at getting her to change this way of cleaning herself which has been a struggle when they get something in there head.. I am now getting her to use flushable wipes.... I have to always remind her of putting on deoderant and brush her teeth.... This all from a gal that had an excellant nose and always kept herself looking perfect.... My god what we all go through to try and keep our loved ones as they once where..........
Dan, you have reminded me of a problem I have been having. For some reason my wife will not flush toilet paper down the toilet, but puts it in a waste basket. I tried removing the waste basket from the bathroom, but she then carried it arround until she found one in our bedroom or the dinning room. I have given up, and just try to empty the waste baskets frequently. Dealing with this disease is sure a struggle, but I try to remember what she was like before it struck, and also the vow I made at our wedding - "for better or for worse, in sickness and in health". It's important not to get upset when they do things wrong, but it sure is hard.
Bathing is somewhat easier now but i still have to argue alot to get husband undressed and into shower. he has been much more cooperative now that he is off the namenda and all alz drugs, at least for now its been a month or so and he is much more lucid so neuro opted to take him off after 6yrs on namenda. we use benadryl for sleep aide and so far good. we are rigid in using the two piece soft jogsuits for wear as he can get to bathroom easier than using zippers. i found the tv clickers in the fridge after looking along time:) Divvi
I have taken care of my LO for the 4 years since DX. I ran into all the problems you all have mentioned...opposition to washing, bathing, etc. Only wanted to wear the same shirt, etc... I thought we would be that way until we died. Notice I say WE...her Alz ended up putting me in the hospital due to wearing me out to the point that an infection was able to take over.
When she went to a home, I warned them of the hygiene problems. They promised to be gentle and understanding. So now I visit, and she is clean, and in a new shirt, and hair is washed, and she is soft and lotioned up. What MIRACLE is this? Well, the way they explained it, it is not uncommon for the patient to resist the LOs. When she refused my assistance, I gave up rather than fight. The caregivers there walk in, explain that it is time for bath, and they firmly but lovingly go through the motions. By the time she works up to resist, it is over and she is clean. I can't blame myself, it really works with people OTHER than the LO's LOs!
So my point is that, even with the best of intentions, you may be butting your head up uselessly against a wall. Hire a person to come in that knows how to do this, or get some different nice person who can handle it to try. A part of your caregiving is knowing when to turn it over to others. You wouldn't dream of being your LO's doctor...maybe try letting this to others, too.
trisinger, your 2 cents is probably worth hundreds of dollars to someone who isn't at that stage yet. You have answered the question about when to bring in outside help. You bring it in when some part of what you are trying to do stops working.
I've read some horror stories, not here, but on other support groups about caregivers pushing themselves to the limit and beyond because they don't recognize that the time to get help has come, or worse that it had come years earlier.
My DH also was getting very hard to bath, change clothes, etc. It was like I was beating my head against a wall when trying to get all the grooming and personal hygiene tasks met. I was his 24/7 Care Giver for over 4 years, but, I also had to finally let go and turn the Care Giving over to others. He is now in a NH and his clothes are changed everyday, his teeth brushed and he is shaved. I see him everyday for 3-4 hours, so, I just make sure everything is done for him, but, so far so good. I tried the Home Care for 6 mos., but, we were still running into some of the same problems being at home, and the dependability issue was also a problem. But, no matter what type of care you choose, please do not push yourself until you are the one with the major health problems also. I felt I went the distance and last year my blood sugar plummeted with all the stress with dealing with Alz.. My doctor just flat told me that I either need to place him, or I might not be around to worry about it. That was a wake up call and also a very scary time for me. I could not let Alz. take a second victim and I was well on my way. I am doing a lot better now and my wonderful husband is also doing pretty well under the circumstances. He is totally dependent now and in a wheelchair, so, I know I have done the very best I can in this situation and I took it as far as I possibly could both mentally and physically. The Staff is very caring and know how to work with the residents. I am still the Caregiver, but, in a different way now.
Thanks, trisinger for your comments as I went through all the things you did and also had to make the choice you did about letting go, very tough, but, I know it was the best choice for us.