This is a hard thing for me to write, so please bear with me.
I've been thinking over all the things I've read recently about a caregiver reclaiming their own life. I was typing in my journal about this, and before I could censor what my fingers were doing, they wrote, "It seems like you are turning your back on your spouse when you set out to reclaim your own life". I realized that was one of the subconscious things that kept me from spending time and energy on my own life. It did feel like I was turning my back on my husband. And I hated that feeling.
And then I heard a little voice inside my head say, "And if you don't turn back to life very soon, you are going to wind up at the same place he does". That was shocking to me. Of course we don't want to wind up at the same place—losing our lives to this horrible disease. But that was the path I was on. You can't give up everything in your own life, up to and including your own health and the spirit inside you, and not wind up at that place.
So I am working very hard now on turning back to (recreating, actually) having a life. (Reading Twenty Wishes helped with that.) I've decided that I do not best serve my husband or myself by destroying myself as a caregiver. And that's exactly what I was doing. I'm still in the same situation, with the same limited resources, but my focus has shifted somewhat. Not completely, but somewhat. And I know that if I could ask my "before" husband what he thought about this, he would cheer me on.
It is another terrible aspect of this disease that it can entrap you so completely that you just about feel guilty for wanting to LIVE. I don't think I want to feel guilty about that any more.
Oh, Jan....you get it....! This is what I have preached all along.....don't let this disease claim two victims. Believe me, I know how hard it is to "break out". But, I am living proof that it can be done. Even while my husband was alive I tried new things, I made new friends, I did things on my own, I traveled, and I still took care of him. Yes, I had some help.....paid and unpaid, but it was the best investment I could have made. When he died I didn't have to readjust to the real world....I had never left it.
It is not being selfish to think of yourself. What is worse is seeing your own life dribble away while we sit and watch the life drain out of our spouse. Not good, not healthy and not for me....I hope not for any one of you, too.
Yes Jan. It's ridiculous how this disease can make us both unhappy and lonely, due to relationship deprivation, and at the same time leave us feeling so guilty. I often feel mean, and like I'm "turning my back," just because of the simple truth that I cannot get through to him in a meaningful conversation, of any sort, anymore. Now obviously it isn't my fault that we can't converse, and that I have more or less ceased to bang my head against the wall by trying, but there's still a little part of me that thinks I SHOULD be able to find a way to connect with him, and that I must be neglectful for not trying harder. Blech. I'm in a cranky mood this week.
Jan, I want to second what Sandi* said and to emphasize that it's much easier to get on with life "after," if you haven't completely given up your life before. Try to establish/maintain contacts/interests, even if only sporadically. We dedicate ourselves and our lives to caring for a dear AD spouse and when the loved one is gone, find ourselves emptyhanded, so to speak.
The Dementias are insideous destructors for our LOs and us. Always, our instinct is to jump in and caregive the LO who is ill or hurt. I can't think of any other disease which takes out the caregiver too. It's because, with other conditions the LO recovers, or dies in a limited time. If the condition is chronic, once treatment is established everyone still "has a life". Not so with the Dementias. They strike and we go into caregivinbg mode. And as they progress, more help is needed so we keep increasing what we do and do less for ourselves. This happens subtly and we don't realize it right away. We have to conciously fight the instinct keep giving more and take care of ourselves. It is not selfish. It is self preservation. The caregiver who collapses mentally or physically can't care for anyone. Preserving even pieces of our life in the "normal' world, is not turnig our back on our LO. It is making sure we are here for the long haul in getting him/her through and surviving the effort. NO GUILT.
Jan - That is exactly how I've been feeling. As "I turn my back" to my husband and get involved in other things, it gets tougher and tougher. I feel better but I feel lousy. It feels like I am hurting him but yet I know that if I go with him, AD has claimed me too.
Jan, what carosi and others have said is the absolute truth. I have re-started my 'real' life so that I can not only be a better caregiver, but a healthier and positive person when alone once again. I refuse to let this thing take me down or out. But I will still love my sweet DW and do the best I can for her.
My problem is that I feel like I don't have a "future" without him. I know it sounds strange, but I just hate the idea of going back to a time before him. I feel like my life was so empty then. Of course, now I have the kids, so life isn't really empty. Still, there isn't really anything I want to do without him. I'm only 45, but I just can't fathom starting over again, you know?
Kelly, you won't be starting over again....you will be continuing with YOUR life. One which has been enhanced by his being in it. We must remember that we are individuals, who have created our own life, friends, way of living, home, and activities. We include those we meet and love along the way. We give our spouses our hearts and they give us theirs. When AD takes their brains, it does not take their hearts. They still have our hearts and we still have theirs. It doesn't matter that they become teenagers, children, toddlers and babies along their way to a better place, our hearts are connected and will always be connected. I can go on my trips, knowing he's with me in my heart. I don't have him physically, but the man I married, my best friend, my lover, is still with me. I'm better for having had him in my life. I know that he would be terribly mad at me if I didn't do anything because he wouldn't be able to do it with me. He would want me to have fun for both of us. I don't know what the future will bring after he's gone, but I plan on living my life to the fullest and celebrate the wonderful times we shared, places we went, things we did together.
Even before this disease, I was always concious of having my own things due to our age difference. I knew that there was a good chance I would be alone someday. He always encouraged me to pursue my intrerests too.
My DH made an interesting comment early on about how he didn't want the fact that he had the disease to change his sons' lives. He wanted them to continue doing the things that they were doing in their own lives. He did not want me to stop working due to his having the disease.
Most (if not all) of our spouses would not want us to go down to the grave with them due to this disease. I know I certainly would not want that for him.
Even when he was home, I did continue doing some of the things that I like - just not as much or as often. I was healthier and happier because of that. It also gave me something besides AD to think about and focus on. Doing those things gave me something to tell him.
It is a very tough road we walk between balancing their needs/wants with our own without giving the road totally over to them. We are better maintaining a piece of the road for us and we are better for them having done that.
Kelly, I can so relate to you. I can't imagine life without Lynn. He has been in the nursing home since Feb 17th, so 8 months and I have yet to do one single thing "for me". I have the time now to meet up with old friends for lunch, to go out and rediscover all the things I use to enjoy, to do all the things I haven't been able to do for years due to caring for Lynn. I now have the free time needed, but I do not have the will...
My life still revolves around Lynn. I plan nothing, except going to see him every day. When I am not with him, I worry worry worry about him. I think only about the next visit.
I have been thinking a lot, and you are all right, our pre-AD spouses would be horrified. Lynn would be devastated to know I am self destructing. I keep asking myself why I can't enjoy this "freedom" And the only true answer I come up with is guilt. I DO still feel so guilty that I wasn't able to keep him home. I KNOW with every fiber of my being that he needs more care than I could provide, I KNOW he is where he needs to be and is even happy and content there now. Yet the guilt eats at me, and I feel the worse kind of failure.... That he needed me, and I couldn't be everything for him.... I can't explain it any better. I know what my heart feels, but it is hard to put to words.
((Sandi)) I keep reading all that you write, and I always take something away from it that helps me. "When he died I didn't have to readjust to the real world....I had never left it."
Just how does one reclaim their life? How do you reconnect with your innerself? I pushed "me" so far into myself, I am not sure I know how to find my way out .....
Nikki, it's a battle between the heart and the mind. In our hearts, we don't really want to do anything but try to be with our LO all the time, but in our minds we know we have to begin to live a life for us, knowing that is what our LO would want for us to do if they could tell us so with a sound mind, but they can't now. So start now, Nikki, even if it means skipping just one day a week visiting Lynn. And in the time, do just one thing you used to enjoy, like window shopping with a friend, or just having lunch with one. Anything to start the mental process of thinking for the moment of just you. I know it has been easier for me because my DW is so far into her own world. I wish you peace.
How ironic these posts would be here today. After visiting with John at the facility I went to the library. Something I haven't done for over two years. The book I wanted wasn't available so I got 20 Wishes instead. On impulse on my way out I got a vanilla cinnamon latte to go. After checking in here I plan to grab my favorite afghan, kick back in the Lazy Boy, read and sip coffee to my hearts content. Small steps towards having a life separate from my husband certainly, but steps none the less. I could have come home, done his laundry, called the family with an update, and looked through the closets for warmer clothes to take tomorrow. I will do all those things....tomorrow. The rest of today is for me. Nikki...I don't think we have to write a novel, take a vacation, or get a job to be a whole person. Today the library and latte. Tomorrow...who knows? xox cs
TJ, you have come so far these past months. My hat's off to you for taking the necessary steps to take care of yourself.
For Nikki, Kelly and others, we know this is a terminal disease. You KNOW your beloved spouse is going to die of it. You know that somewhere down the road this will happen and you will still be here. Try to take even little tiny steps toward finding some kind of interest. Nikki, try very hard to ignore the guilt for just one day and go shopping, to a movie, out to lunch with a friend. It will be hard, you probably won't enjoy it, but it will be a little bitty start.
Another thought. Take a quiet moment where you can think about this seriously, ruminate on it, try to picture it: the situation is reversed, you have terminal dementia, your spouse is doing his darndest to care for you, at the exclusion of all else. Is that what you want for him? I know, I DO know, it's hard to hang on to some separate piece of yourself, but it's as important as anything else you will do.
cs - yes, that's about all I want to do. I am older than most, but I also was never all that social, I'm an introvert, like being alone--no, not all the time every day--I have a lot of people around me. My children live nearby, I rent their old rooms to college men, there's a lot of things going on. But I also have large blocks of time when nothing is happening, I'm a news junkie, that's always available. I worked outside the home from time to time & was always a big-time volunteer, so now I enjoy and have earned my 'me' time. Often I prefer to stay home than go to another party, nothing wrong with those who go & those who don't, just different needs & attitudes. I would have continued caring for DH, really wish he'd died at home, but the time came when my body told me, 'either he goes into a care facility or you do,' finally I had no choice, every cell in my body rebelled. I didn't feel like I was 'turning my back,' and as you know, a care facility does not mean the end of caregiving, but I was completely heartbroken, it was incredibly difficult, I loved him so. But I shunned guilt, none of it was my doing. When we were all younger, Elizabeth Taylor's husband was killed in a plane crash. She just kept on with life and was somewhat blamed for not crawling into a dark cave of mourning. Finally she told the public, 'Mike is dead, but I'm alive.'
Perhaps I need to reword what I was trying to express above. Some people don't/can't/won't even arrange a few hours of respite care a month, much less a week. I personally believe that caregivers need at least an hour here and there for "me" time, to recharge. It doesn't necessarily have to involve other people, or big interests, just something to refresh one a little. I'm not advocating anything that would be considered "turning your back" on your spouse.
Folly, I know exactly what you are saying. I have been a bit of a loner my whole life and, as a child and young teen, enjoyed this alone time. I meet DH at 15 and we have been like glue since. Then two families and two children. I so enjoy an hour alone. I read, work in the garden, brush out a dog, anything that DH might not like because I am not paying him attention. At work I have 28 people pulling at me, at home one.
Getting an hour here and there is not "turning our back." it's our way of keeping our wits together.
Mary your post is so beautiful. Your way of explaining things is great. That is what I like and need from this site. The truth put in words that make the beast we are all sharing seem more understandable. Simple but informative. Your take on living past this disease is right on target.
It sounds like many of us are loosing a really remarkable, caring spouse that would really understand what would be best for the caregiver even when we don't. I also believe many of our LO do still have a very caring heart left inside. They give us sutle hints all the time. We need to listen to them even if it is just thru jestures. We need to remember in hard times that the love from caregiver to LO and LO to caregiver is the real winner in this game.
Cs, I absolutely love your attitude. It is neat. Keep up the great work of taking care of yourself....... one minute at a time............have a great evening......
I'm trying to rediscover life. I'm reading a lot. I'm posting here and on a couple of other forums. I'm journaling.
I'm trying to do baby steps towards a cross stitch project.
I've called for a caseworker visit and I'm going to try to set up 4 hours a week of respite for me somehow. I'm going to get someone to come in who can follow him out on a walk if he decides he has to go out walking.
I didn't put him into day care last year mostly out of guilt, but also it was too early for HIM to be in that particular day care and I couldn't really afford to pay for the two days a week they required. And I was scared to drive to the other day cares that were so much further away with the kind of winter weather we get around here (loads of ice storms).
I'm trying because I understand just how far down into the hole I've gone.
I recently tried an interesting exercise. I was going out with a couple of girlfriends and decided that I would try to go the whole evening without talking about AD once. I slipped up a couple of times but was very happy with the result. It wasn't easy to do but I leared that I really did have other things I could talk about. That was an eye opener. Even though he is in a facility and I work full time, AD still consumes a lot of my life.
I am now trying to make a point of doing more for myself that I enjoy besides reading and TV and it is an uphill battle all the way but I think in the long run I will be better for it. It starts a small step at a time with just a tiny thing that perks your interest.
So, what was the thing that sparked me this time - I just laughed and laughed at a small quilt hanging that Keepsake Quilting is selling called "The Witch is In". Something about it just tickled my funny bone. So, I have ordered it and want to try and do it by Halloween.