I just wish that other people, the ones not involved with caregiving, understood that it's not just magically over one day. People think that when we are finally not caring for our spouses, we will just run right out and take up where we left off--years and years ago. Even with DH's recent respite stay, people asked me about all the fun things I was going to do while he wasn't at home. To me, the idea of respite mostly meant not having to do anything at all. It was nice just to be able to eat and sleep when I wanted to, and not have to worry about when somebody else ate and slept.

One of these days someone is probably going to say that they don't know why getting back to normal is so hard, because since DH was sick for so long, I've had plenty of time to "get used to" the idea of losing him. I'm afraid that all of the emotions I've swallowed for years are going to come roaring out then, all at once, and I fully expect actual flames to shoot out of my head.

It really does help to hear that taking months to even try to get back to living a life is normal. Absolutely normal. It doesn't mean that I'm wimpy, or not handling things well. It means that we've all lived through terrible, terrible experiences with this, and it will take us a while to heal. It will also take time to try to get back to being physically healthy, after aging and stress and work and grief take their toll on us.

Some time back I saw a television show where one of the characters had lived through something heartbreaking. People asked her how she kept going after that, and she said: "You just keep on living until you are alive again". That one sentence helped me a lot. For one thing, it seemed to provide hope that one day I actually could feel alive again. And when that happens, then I will probably want to pick up my place in the world again. But I'm a long way from being there now.

I'm in a different situation that many others whose spouses have gone into LTC. I was single until I was 40 so I'm used to going places by myself (although I'm not comfortable eating in a restaurant alone). I was a much happier person after I met my husband, but I'm comfortable being a single person rather than part of a couple. I also have several good friends who did not desert me, even though caring for my husband prevented me from spending time with them. So it's probably easier for me to get back into the world.

But even with all this, I'm finding it difficult to rejoin society. I have more freedom and I'm not so tired, so I can get out more. But I don't think I'll be able to take up where I left off or that I'll ever get back to normal. People who have been in prison or combat for years do not resume their former lives - they have to start over. For me, grief is only part of it. The unrelenting stress of dealing with my husband and trying to pay the bills really aged me. Most of all, watching my husband lose his mind fundamentally changed me. It's as though I experienced a genetic mutation. I just spent two days with some very dear old friends. It was great being together again but even though they are involved in a lot of interesting things, I was bored by much of the conversation. A while ago, another commenter said that other people seemed superficial now and I think that's part of it, but not all. Maybe it's partly because I'm not interested in too many things anymore. Will keep going through the motions, though, just in case I catch on. In the meantime, I may get a cat. Cats are such deep thinkers!

It's been two months and three weeks since DH died, so while I'm dealing with the "widowed" situation of trying to move forward, my feelings are very similar to what Myrtle describes. I may work through this grieving process in some fashion, but I will never again be the person I was before the Alzheimers years. I do feel like I've gone through a major trauma, and that it has changed me in the way prison or going through a war changes a person. (I know Myrtle said exactly the same thing--- I don't mean to copy, but that's exactly how I feel, too.) It isn't just that I am alone because of not knowing people here in Ohio, I am alone because I think I have to figure out this "new me" before I can even begin to move forward into relationships. And unique to my own situation is DD's expectations for childcare, which are turning out to be far more hours than I want to do. I have told her that I will be here until next September…giving myself the year…but what is supposed to be a year of rest and reflection is just turning into a year of extreme babysitting. Because I'm here and DH is gone, I have "nothing else to do", and she has decided firmly to end her marriage---looking to me instead of s-i-l to help her with the grandchildren. I feel like I'm being manipulated and almost bullied into caring for her children, and it is hard to say no when she becomes so angry and upset that I would even hesitate. I like the three little grands well enough, and certainly want some involvement with them, but I don't know how I will ever have my own friends and activities when I am already doing around 30 hours per week, plus the shopping and cooking, and DD is already lining up summer programs which will involve me driving the kids to and from on a daily basis. And frankly, DD does not really share my and DH's culture and values, and the children are being raised (I use the term loosely) like wild hooligans. I don't allow my house to be trashed and my dinner table to be turned into a cafeteria grab-and-go, but it is a constant struggle. Tomorrow I leave for a six-day trip back to NY and Vermont, to visit friends and relatives over Thanksgiving. (Two full days will be driving to and from…so four days of visiting.) Weather permitting, I'll try to scoot up to Quebec just to look around for a day. Last year I got manipulated into cooking Thanksgiving dinner, even though I didn't want to (was tired because of caring for DH), so this year I decided to just get out of town. Yeah! I will touch base here with my forum friends when I get back. Like some others have said, I may not be posting as often now that DH is gone (along with Poop Patrol, Medication Jungle, Wheelchair Roulette, and all the other fun things we all do or did)…but I read everything every day, and will chime in whenever it seems helpful.

Elizabeth, this is a difficult situation, but I agree with Charlotte’s advice. Your DD seems to have forgotten when you went through with your DH, and that you need time to recover.

She has made her own life what it is, and she should find a way to deal with it herself. Can you speak with s-i-l about it? They are his children too, and he seemed sympathetic. If you allow her to continue to run your life and use you, then at 80 or so, you will not have had a life, or freedom; also, the children may take their example from your DD and also use and disrespect you. Can you find a counsellor to help you here?

Elizabeth, I am so sorry for your loss. The holidays are going to be difficult and you need to self care. You need to be true to yourself and have a discussion with your daughter. Perhaps it would help to write it all down at first so that you will know what to say. You can say what you need to in a kind and loving way, but you need to be firm. Hopefully you will have an enjoyable trip and once away from the situation you may be able to think more clearly. You need to put yourself first and that is the bottom line. Take care. Love, Christine

Joan, once again your blog expressed the reality of so many of our situations beautifully. All my life I have loved to be alone, and frankly, I found my husband too clingy much of the time. He never liked to be alone. So now my husband lives in a memory center 12 miles away from me, and I hate my isolation. I never expected that his placement in LTC would have such an extreme emotional impact on me. I recently began therapy, and the therapist mentioned that it actually is a form of PTSD. Still trying to recover from the years of his falling, raging, crying, and becoming incontinent. The endless nights of no sleep and no time to do anything but try to make sure he didn't fall and break bones, which of course he did anyway because I had to go the bathroom once in a while! The years of denying to myself that he was as ill as he was, and covering for him so he would not realize how ill he was. I guess I expected isolation to be a blessing after all of that, but it is now at all. I fear becoming agoraphobic when he dies - he is the only reason I ever leave the house. It's a little scary. I hate my isolation but I'm too terrified to take steps to become less isolated. I thank God for you, Joan, for creating this community where we can all feel less alone in our struggles.
Joni