I had thought that when the time came to place my husband, I would be grief-stricken and guilty and trying everything I could think of to keep it from happening. I don't think that's going to be the case.
When my husband went into respite recently, I came home and put on my nightgown and sat down. For about three days I didn't even comb my hair. I just sat there. If there hadn't been food already cooked, I don't know what I would have done for meals. I had all these things I needed to do--even wanted to do--but my body would not cooperate with me. I tried to go to sleep, but for hours I was too wired and too exhausted even to sleep. For several days I was too jumpy to take a nap, even though I tried.
Whenever DH would go to respite, I always promised him that if I told him he was coming home afterwards, then he would come home. This time I'm not so sure. I started thinking about him being home again, and my entire body started to clench up.
I know that the average person on the street doesn't understand the every-waking-moment vigilance that a caregiver has to live with. But the caregivers on this site do.
Almost at the beginning of this web site, I saw an article about a caregiver who kept her husband at home for one year too long. In our case, I think it's been about five years too long. Recently I remembered a post I wrote about finally giving myself permission to quit, and when I found that post again, I was surprised to see that I wrote it in October of 2012. At that time I thought I was worn out and burned out. Back then I wouldn't have even recognized the wreck of a human being I've turned into now. We are in our 15th year since diagnosis, and I am just broken into a million pieces.
I have congestive heart failure and kidney disease. Recently I've had to start taking nitroglycerine for angina. I've been disabled since my early thirties from arthritis, and recently bought a walker to help me get around. I have major spinal issues which cause constant severe pain, and which will only get worse. I think that if I want to have any "after" worth mentioning, I better get started on it pretty quickly. But most of the time now, I think that I've simply waited too long for any "after". Even a trip to the grocery store is an exhausting expedition. And I've gone from worrying about my husband being in a nursing home to worrying about how I'm going to keep me out of one for a little while.
I really thought that there would be more satisfaction from keeping him at home so long. Maybe that will come when some of the exhaustion lifts--if I last long enough for that to happen.
(((hugs)))) Jan - I agree you need to place him. As we say often, we can't let this disease take two with it. With your own medical problems I can't believe you have endured this long. I hope it will work out so you can place him, then take care of yourself.
Depending on who is paying for it, placement often does not depend on our condition but our spouses. We are into year 9 and like you, I am exhausted. I try to tell myself there will be a future, but as time goes by and my body hurts more, I wonder if there will be.
Jan K, you have been a wonderful carer but it is time. There will still be many demands on you even when your husband is placed. If you keep going as you are I doubt that you will still be alive, to be his advocate. There are many here who will be able to guide you through placement. Ring someone today and start the ball rolling. Jan be kind to yourself and know that you have already given so very much, well above and beyond what would be expected from carer of a non-dementia person.
JanK, It sounds as if you are sinking fast while trying to hang on to your caregiving world. After placement I realized that I should have done so sooner. I just thought that I should continue because so many family members and friends kept saying the old "He seems fine to me," and I believed them. I was sinking lower and lower. Only here on this site did spouses understand. The admissions nurse was shocked when I told her he was being admitted from home and not from another facility. I knew for sure that I made the best decision I could. He remained in care for 5.7 years before passing away last fall. It will at least be easier for you physically and you will have time to care for yourself. It can take a while to work things out for placement so please, for you, make the call. You have done your best. Take care.
Oh JanK.....you've gone above & beyond. I don't know how you've done it! I think it really is time, probably way past time. You are physically & emotionally beat up...a person's body can only take so much before it breaks down. Please take action now.
JanK, I echo CO2. We must save ourselves, and our partners and spouses would want us to save ourselves if they still had the cognitive ability to tell us. It aint easy, but you have to make decisions about what is best for you. Keeping you in my thoughts and prayers.
Jan, I really don't think you have a choice. It will be hard for you to go through this, probably harder for you than for him. But for both your sakes, you just have to do it. Do you have someone who can help you with the details?
Jan, I waited too long too, now my body is exhausted as well, even though he died this past January. I thought I would have some 'after' but now I'm wondering. I'm 78, healthy, except for arthritis thoughout my body, spine being the worst. I had spinal fusion and a knee implant and am going next month for an implant in my other knee.
We truly know when we can't handle it anymore. Your body is telling you it is time. Try not to feel guilty about it. Get someone you trust to go with you to check out either an assisted living or nursing home placement. When he is placed you will feel tremendous sorrow. I did. But, for you, and for him, it is the best thing.
Jan, I was wondering if the place your husband is staying during your respite is the same facility you would be admitting him into? Or will you have to decide on a different place? I went back and read your first message on this thread and what struck me was your excellent description of the caregiver's "every-waking-moment vigilance." That is what eventually did me in and I think that at some point, respite is not going to be able to counteract the damage done by that state of constant vigilance.
The nursing home where DH has been for respite is the nursing home I am thinking about for placement. There are some issues, but I feel like he is safe there--which is something I couldn't say about some of the other nursing homes he has been in. We have experience with four so far, and with two of them I brought him home from respite early because I feared for his health and safety. (In one of them, the facility doctor told us in confidence that there were serious problems there. How bad would it have to be for their doctor to tell us that?)
In this nursing home, most of the staff seems kind. They remember his name when he comes back, whether for a quick visit or a respite stay. He has gotten used to the people there, and they have gotten to know him while he is still able to converse with them. I think that would somewhat ease the transition.
One major advantage of this nursing home is that it is only a couple of miles from our house. It is on the way to everywhere I go in town. It will be easy for me to check in frequently, which is something I want to be able to do.
I wish this could be the "perfect" nursing home, but I doubt that there is such a thing.
It sounds pretty good to me. I'm glad that after all you've gone through, you have found a place that seems to be suitable. I hope your husband will adjust well.