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Thursday, February 14, 2013

Grief Update

It will be 6 months since Joe died in a few days. Actually a couple of weeks. I seem to need to do an update here.

There was someone who commented on a post from the month or so after my husband died who took exception to the idea that anticipatory grief did not exist. Several of the books I read took it for granted that you don't start grieving until the person dies. It was obvious to me that she is dealing with caregiving for someone with dementia, or one of the other diseases where the care goes on for years or even decades. She sounds like she is in the middle of anticipatory grief.

I totally agree with her. I've been there myself. I was fully in mourning mode for at least a year to 15 months before Joe died. By the time it started there no longer was any interaction with him because he had lost the ability to interact in any way. But there was plenty of grief even before that.

You grieve the loss of the life you thought you were going to have. You grieve the loss of "the couple" thing, being part of a partnership. You grieve the loss of a social life, in my case it was an almost total loss since my actual contact with other human beings, and not just Internet friends, tended to be limited to the person at the cash register, or the person serving me a meal at the local diner. That went on for a week or two at a time, and repeated for a couple of years.

When the death finally comes, there is more grief, but there is also relief, and guilt that you are feeling relief. It doesn't matter how good a job you did in the caregiving, because with some diseases, and dementia is one of them, failure is the only possible outcome. In my case there was also numbness.

I had chosen life when my hands on caregiving days were over because my husband was placed in a nursing home when it was no longer safe for me to keep him at home. Because of how long he continued to live, he would have had to be placed because I would not have had the physical ability to take care of him once he was totally bedridden and could no longer get out of bed even to sit in a wheelchair.

I had chosen life, but it took me quite a while to move on that choice. I made small, tiny changes to my life, and slowly they have begun to show up as rather large changes.

I look back and I see how much better I am than I was even 6 months ago. I look back and I can't quite see when the mourning started, but I'm glad I chose to deal with the pain and the sadness and the grief when I did, because I seem to have come out of it almost completely.

Most of the time, these days, I'm happy. Life is full of interesting things to do, and interesting people to do them with.

Take care all.

7 comments:

  1. Stella, your post is meaningful to me. I am glad to hear you are doing well and your attitude toward life is positive. I started reading your blog via link ups at Leah Day's site, and now I just visit regularly.

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  2. I am so happy for you Stella. You've been through a lot and seem to be doing so well at allowing yourself to feel while moving forward. That's not easy!

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  3. Yes, that was me that made that comment. I hadn't finished reading through your blog yet. That statement, which I have heard time and time again, really struck a cord. I have a close family friend suffering from dementia. I have been a caregiver for her over the past year. I, too, am grieving her loss even though she is alive. There are so many losses and time filled with grief even though she is "alive." I have heard people be dismissive of my grief because "well, at least she's still alive," and "well, at least you can spend time with her." I have come to dread these 'at least' statements. Not to mention the judgements placed on our relationship. "Well at least it's not your mother" and other such nonsense. I enjoy reading your blog and your words of wisdom, thank you.
    -Cassi

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    1. Cassi, what struck me was that I could not contact you to explain that I, also, don't agree with the books. But I do understand where they come from. If the sickness only lasts 6 months to a year, it is considered a long term illness, but it is unlikely that the grief that is felt will affect the grief that happens after the death. It isn't that it isn't deep enough or important enough. It just isn't long enough.

      Dementia isn't the only disease that can last years or decades. And caregivers in those diseases tend to have a lot in common with dementia caregivers. The only face to face support group I ever attended (one meeting) was mostly not dementia related. There were four patients with dementia who's caregivers were present. A couple of Mother/Daughter caregivers, and two wives. None with Alzheimer's. The others were dealing with MS and brain injury and Parkinson's and other diseases like that. We were all dealing with a very long term caregiving where normal life is gone for years or even decades. You live through that, you do anticipatory grieving.

      Joe was "still alive" but didn't know I was standing by his bed. And you can't spend time with someone who doesn't know you are there. It hurts too much. And it doesn't matter if it is your mother, or your aunt, or a person who might as well have been your aunt. Pain is pain. Grief is grief.

      I hope you see this.

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  4. Also, I use other people's computers which is why I post as anonymous. But I signed my name at the bottom. It's Cassi.
    -Cassi

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  5. I am glad you are feeling better six months out from your husband's passing. I understand what you are saying about anticipatory grief. I watched my mom's slow decline after a stroke and then other health issues, and even though she had her memory, the overall debilitation was difficult to watch. I remember thinking (while she was alive) that I missed her. I missed the "old" her. My dad was the main caregiver, and I was just thinking the other day what a happy guy he seems to be these days. I am glad he is enjoying his golden years now, but I'm sure he went through a lot of the same emotions and feelings you had.

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  6. Stella, I'm deeply impressed by your open and honest post. I really hope for you that these happy days will expand and that the sad days will fade.

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