Last evening was particularly stressful for me...Dan didn't take his usual Saturday night bath, so I had to keep "encouraging" him to take a shower on Sunday evening (not that he even knows what day it is). He looks at me in a way that I can't quite describe - either he doesn't understand, or didn't hear me correctly (yeah, right), or he's full of resentment/anger. In any event, I must say it kind of chills me. I just don't know how to take that look. I wanted him to get it over with, as I absolutely did not want Downton Abbey to be interrupted! Nor the new show after that called Mercy Street (very good, by the way). I did miss a little of that one, however, as it turned out he had wet himself & was completely unaware of it. Of course, I had to take care of that, amid much repeating what to do with his soiled clothes, to get into the shower & use soap! He took such a long time just to get into the shower, & once in, an extraordinary amount of time. I kept checking on him, much to his annoyance & by the way, he did not use his washcloth or the soap. I give up! When I brought this to his attention & wanted him to do things correctly, as is usual, he gives me that look, tells me either to get out, or you may leave now. Sometimes he's not so nice about it, like "leave me the hell alone" or "get the hell out". I realized then that I must have someone come in one day a week to help him with his personal hygiene. I've been settling for one day a week for a long time now, so no big deal there. Oh, and after his so-called shower was over & he was dried, he proceeded to put on the clean clothes I had laid out for him for today! Then I had to convince him it was bedtime & he needed to put on pajamas. It's after 1:00 PM Monday & he's wearing his pajamas around the house....oy. I guess the whole thing brought this to mind...for me, I think it's the hurt that he seems to look upon me as a nagging bitch, he resents me, he distrusts me - after almost 50 years, this is the way it is. Very hurtful. There's all of the other emotions that we all go through, but this hurt in my heart seems the worst. The part of it that hasn't turned hard is splintering into a thousand pieces. As you can tell, it has been a particularly tough couple of days for me, but now I've gotten it off my chest & down on paper, so to speak.
I did have a small counseling session last week with my pastor...he was very encouraging & insightful (he's good that way). One thing he told me & I hope to hang on to those words, is that there is more to Marilyn than being a caregiver. I've lost me, & I need to try to find myself again, one step at a time. It will be pretty difficult to do through feelings of hopelessness, anxiety & depression, but I need to be important to myself, not just Dan. (Some of that sounds like I'm back in the 60's/70's, trying to "find myself"!) Sorry to be so long-winded, but I think you will all understand, like nobody else can.
Mim, It sounds like Dan is at the stage where he needs more help. (Is he still wearing his own underwear or is he wearing pull-ups?) As far as telling him things, e.g., what to do with his soiled clothes, try to avoid giving him instructions and just do these things for him. When my husband (sort of) showered, I would hide his soiled clothes (and anything else I did not want him to wear) and put out the clothes I wanted him to put on so he had no choice in the matter. Try not to stress about the soap. Water is better than nothing.
Remember, even when men are at the top of their form, they do not like their wives telling them what to do and often describe simple instructions as "nagging." (Sorry, guys!) When they have dementia, they know they are screwing up all the time but don't understand what they are doing wrong it's even worse. Also, it's my impression that Alzheimer's patients pay more attention to the tone of what is said that to the content. After I realized this, I got in the habit of self-monitoring the tone of what I said and realized that most of the time my tone was not friendly or affectionate. So I changed that. I started to be super-nice and although it was really quite phony, it made both our lives a lot easier.
Mim, I also want to add that I understand the feeling of not being important to yourself anymore. I was thinking of this the other day. Because of my upbringing, I was taught as a child and a young woman to always put other people first - to give others the first chance, to offer them my seat, to take the last brownie on the plate (if there was one was left). I had to work hard as an adult to put myself first or somewhere near that. Alzheimer's has put me back on the sidelines, no longer important even to myself. It's not that I see myself as a caregiver - I don't - I just see myself as someone who must take a backseat for now. I have accepted this role, maybe because it is familiar to me from long ago.
Myrtle, thanks for the reminder about tone of voice mattering more than content. I did know that, and I've gotten away from it. I hate sounding snarky. I will think of voice modulation as self control, and I'm going to try to do better. Also, I'm starting to frame questions, which doesn't help either. Gotta stay with the program! It really does make a difference.
Mim, I have been thinking about this for a couple days, trying to think of what advice might help--because my experiences with Larry were very similar. He would "shower" every morning, but not use soap...wash his hair with the conditioner instead of the shampoo...not shave or else do a really poor job of shaving...put on dirty clothes and insist that they were clean...etc., etc., etc. And of course get shirty and indignant when I would try to intervene. This was the time in NY when I finally had to put an aide in place. It was a little easier for me, because I was going to work, and could get the aide in the house by saying I needed her to clean. Then of course she would kind of jolly him into the shower and just go ahead and do her job. That "in-between" stage, where they start to need some help, but of course don't think that they do, and don't want to accept it, is extraordinarily difficult.
Try not to give him any choices that at this point are just going to confuse him. Just have the basics in the shower, like a bar of soap and a bottle of shampoo (or no shampoo, if he washes his hair with the bar soap). And maybe just lay out the clothing that he will need to put on immediately. I would have your incontinent supplies on hand, even if you don't need to use them all the time. If he does have an accident, you will have what you need to clean him up and freshen the house without being any more messy or smelly than it needs to be. So...gloves, wipes, paper towels, plastic grocery bags for the smelly trash, odor-neutralizing room spray, bottle of white vinegar, maybe a bottle of lotion if you have to try to get dried BM off of him. And I really would buy a box of pull-ups of some kind, just to have on hand.
It really sounds like it is time to start an aide. I know that just a straight private-pay aide from the agencies (Larry's in OH was from ComfortKeepers, recommended by Senior Independence Hospice.She was sweet, but destroyed my vacuum cleaner.) is going to be expensive, and once you start aides, you can get into a whole new range of aggravations and issues. Sigh. I'm just wondering what he is eligible for through the VA. Does he fit under the guidelines for Aide-in Attendance? I would ask Frank Mahaffey about that, or see if you can find out online. Is there any chance that a male family member could help him, if he would allow it? Just a thought.
Thinking about how we all lose ourselves in caring for the ill spouse, I am tearing my hair out to think what I could have done differently, or better, so that I would not have ended up so ravaged. I think that whatever it takes, you must hold on to whatever it is that makes you You. Even if it is five minutes a day, you must do something that is soul-nurturing...or at least relaxing...and also hold onto your own physical health...maybe get a short walk outside every day. I think the activities Charlotte talks about are very good. For me, it was escapist paperback books, my treasured first cup of coffee on the screened porch in the morning, and a walk outside if I could. (Never seemed to be long enough.) Just little things.
Elizabeth, I do have supplies here, minimal for sure, but getting prepared. We are going through the VA system, got a call the other day for a little more info for the daycare approval. I need to call Bob Mahaffey again to see about someone coming in once a week to help with Dan's hygiene issues, don't know how any of it will work out at the moment. Things have been comparatively quiet, but I have really done NOTHING for about 2-3 days now. Take that back - I did weed out some more books to donate to our church library, but that's been about it.
I finished a Kindle book called "One Foot in Heaven" (I think!), about the adventures (?) of a Hospice nurse. True stories, some so sad, some horrifying (involving ants, not my favorite thing in the world!), some sweet. Just interesting. Now I've started a trilogy called "Princess", about the real war on women living in middle eastern countries, the main being Saudi Arabia. The horrific way people still live (the original was published probably about 10-15 years ago, I figure it has probably regressed since then!) & I get so wrapped up in it I don't want to do anything else.
Thank you all again for your input & for putting up with my rant. I go back I re-read everything a few times!
Mim- We all struggle and vent and it is ok. Learning to accept that our once viable capable spouse can no long do things like shower is a hard thing to accept, as well as not expecting them to no which clothes to put on. I have had to change all thinking and look at my husband differently in order to deal with type of situation. I reached the point several months ago that now his daycare facility showers him 2 times a week which has helped tremendously. Changing how we think and handle things is really all we can do because they just do not have the capacity to understand anymore. Know that we care and that we are here for you. Hugs.
Mim, I just want ro say I could have written your post. I am dealing with many of the same issues and I can certainly relate to "the look." As they say "if looks could kill - - " One issue I have is that he doesn't recognize me as his wife even though we have been married for 57 years. He will often ask where his wife is and say he hasn't seen her in a long time. This is extremely hurtful although I know he simply doesn't remember who I am or who anybody else is for that matter. When his brothers came from PA to visit, he acted like he knew them but when they left he wanted to know who those people were. He doesn't recognize who his sons or grandchildren are either.
Oh my, I just received the phone calls from the VA. First scheduled appointment for toe nail trim...no big deal. Then...the daycare has been approved, just need to send in the paper I forgot to fill out! The paperwork is also being turned in for someone to help once a week with the hygiene aspect of Dan's care. I'm as nervous & anxious as can be! I'm just feeling so negative, knowing these things will just not work out, knowing my Dan as I do. I also forgot to fill out the paperwork for Aid & Attendance....I wonder which of us needs the most help!!!! Oy......
Mim, just calm down. When you have "case management" to do, try keeping a to-do list so that you can check off the tasks as you go through and do them...whether it be that you need to make a phone call, fill out a form, sign the form...whatever. There's only going to be more "case management" going forward, so it helps to figure out an organizational system. A binder, a certain kind of folder that you like...pens, stamps, address labels, a list of telephone numbers. A place to save brochures and information you may have been given...a notebook for you to write down reminders in. Just whatever works for you and that makes your life easier. Have it right there and handy. Take it with you to appointments. And so forth.
Don't forget that the folks at the VA are without a doubt used to dealing with vets who think they don't need any help...vets who don't want to comply or do whatever it is they're supposed to, vets who are "difficult", etc., etc. Aid and Attendance is a great way to get some extra money coming in if he qualifies, and as far as I know, it doesn't affect Medicaid eligibility--which was always a big plus for those of my patients who had it. If you can get Aid in Attendance I'd jump on that one, if it is still as helpful as it used to be.
When the aide starts, maybe you can meet her and then exit stage left. Go to the mall, go relax and get some coffee and a bun. lol Dan may well be more cooperative if you're not there. She may just spend the first visit getting to know him and trying to get him to let her do little things--maybe not the complete shower the first time...but she should have had an orientation by her supervisor--and as I said, it is a very common scenario, and they should know how to work with him.
At first my DH absolutely refused to have someone bathe him ...he was so private ... no way ... it was ok for me, but he was bigger and heavier and had lost his mobility, and it was too much for me.
So I arranged for PSWs to just come and visit with him, take him for a walk (I went along to keep him comfortable). The PSWs and I would be like friends, and talk, always trying to include him, mentioning things he had done, etc., praising him.
Your DH is a vet, so do you have any pictures of him at that time? I always tried to speak with praise to the PSW about my DH, and make him feel that he and his life were important. That worked for us, and eventually I tried to introduce bathing, where the PSW and I both helped. As he became comfortable, it worked.
I know they are all different.
Don't know if this is of any help, but I wish you the best.
I concur with Elizabeth that it is important to have a To-Do list ... it will help you!
Mim, elizabeth* and marg78* have good advice. Also, look at the second paragraph of Bev's post on the "what should I do?" thread. And don't go into this assuming that nothing will work. Dan may not accept all of it at once. (It took my husband weeks to accept going to day care - on one occasion he refused to get out of the car. But he ended up going for two years.) But some of his reactions may surprise you. We are all very hopeful that these benefits will give you a much-needed break.
Mim, one other thing I tried for day care, (because he kept saying ... no way ...) "the doctor thinks this will be good for you, so why don't we give it a fair try it for a month (4 or 5 times), and if you still don't want to go, we'll reconsider. My DH said ok to that, but after 5 times he still didn't like it, so I said, 'you DID give it a try', and we discontinued. Your husband may get to know someone that he can bond with, and you might be lucky. Let's hope.
For an aide in the home, you can stress that the doctor is insisting on this.
Or tell him he is entitled to it because he is a veteran, so might as well use his benefits.
Or say, "Well, as long as she's here..." And then go on to suggest she might as well go ahead and do some cleaning or something. A variation of this is "Well, just for today...and let her dust or vacuum, wash up his dishes, etc.
There is also the approach that she needs the money, that she will get in trouble with her agency if he doesn't let her stay...something like that.
And Mim, once you've introduced the aide and are satisfied that you trust her in your home for a couple hours, just get out of there. Come up with some pressing reason why you need to go to Giant Eagle or whatever. And just leave them alone to get on with it. He'll probably be nicer to the aide than he is to you...patients tend to not be rude.
Good advice from everyone...thanks. I don't mind anybody's 2 cents worth, it's all good.
I've calmed down a little, I think my anxiety made all of my negative thoughts surface. His driving privileges being taken away hasn't been that big of a deal, so maybe these things will work out better than I think. Although...they are of a more personal nature, but we shall see.