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Tuesday, August 21, 2012


All of the books are in agreement. There is no such thing as anticipatory grief. But I'm a poster child for anticipatory grief. So they are wrong. What they are probably right about is that it is rare, and that it requires specific things to have happened to have forced you to grieve well before the death actually happens.

One thing I know. My Joe died at the very end of the dementia process. There are seven stages, 1 to 7, and in stage 7, which is the last one, there are 6 phases, A to F. Joe died at 7F. There is no 7G. At the end of 7F, language is totally gone, even the last word. They forget how to smile. The body breaks down and all of the organs begin to die. The ability to come back from an infection, even with antibiotics is over because as soon as the antibiotic is stopped the infection comes right back again, and some of the time even the antibiotic can't slow it down. The ability to interact with the outside world is totally gone. They don't react to their names anymore. They don't focus on the person right next to them. They don't know you are there. And finally they can't hold their heads up. And then they can't swallow, eat or drink and then finally they can't breath.

Most of my friends who are also dementia widows never experienced stage 7. Most patients never get there. Some infection or some other, equally terminal, illness takes them in stage 6, and even occasionally earlier. The patients are still talking when they get to their final crisis. Some of them are still walking around on their own. There is still some small quality of life, some interaction with the people who love them.

You can't have a relationship with someone who doesn't know you are standing there. As long as he could smile at me, or let me hold his hand, there was something. But when those things were gone, all there was left was the pain of loss, so I started working on the grief I was feeling.

I have been talking to the hospice grief counselor for 2 years. I have been journaling. I've been reading books and thinking about what they say about how to get into the grief and work through what you are really feeling.

The books also talk about the various tasks people need to do after the funeral. Like emptying closets. I did the last of that last November and January. There are still two coats in the house because my daughter, who helped me with this task, couldn't let go of the last two coats. And that was OK, so I kept them. Or taking care of financial matters. For various reasons I had to do that early too. There literally was almost nothing left to do once Joe was buried. At this point there are only two financial things were I'm waiting for other people to finish what they need to do, and in one case I already have a good idea of what is going to happen.

They talk about having to buy big ticket items and make changes to how the house you are living in looks, and suggest you wait so you can think clearly when you do it. All of my electronics including my big TV set and my computer died within weeks of placing Joe. I had to replace them because there was no option. I replaced the bed we had slept in together this Winter because it also had to be replaced. The bedroom no longer looks like he lived there. The other rooms aren't all that different yet, but there are already some differences, and will be more. Some things have been put away. Some things have been given away and replaced. I already have a list of what should be packed up because those things are his, not mine. I've been considering repainting the public rooms for several months, and that will be a major change because the colors will change. It will also require that some things be packed up and put away, and they are unlikely to come out again.

They talk about taking a good look at what you do, who you spend time with, who your friends are and what your interests are that might be different when you are a widow instead of half of a couple. I've done that already. I joined a church. I went to bible studies and made good new friends who are not people we would have been friends with as a couple. Some of those people are part of a couple. Some are other widows. I went looking for other widows before I actually was one because for all intents and purposes I no longer was part of a couple. There wouldn't have been a whole sewing studio in my bedroom if Joe was living there too.

There are suggestions that you work through the unresolved issues in the relationship, and a lot of that has already been done too.

There has been some more intense grieving since I got the call that told me that Joe was actively dying. Numbness. Sadness. The inability to make decisions without forcing myself to focus. There are still some after the funeral tasks that need to be done. Some thank you letters to write. Some condolence cards to open. But that too, is almost finished.

I'm ready to begin to take the next steps towards normalcy. I am still spending a lot of time thinking about and feeling my grief, but I'm also seeing light at the end of yet another tunnel. I wouldn't be surprised if some of the firsts out there make me feel and think again, but I also know that I've experienced the first Christmas, the first Thanksgiving, the first time I didn't buy Joe a present for an occasion, my 50th Anniversary without him, birthdays - his and mine, with no celebration, etc. I've already made changes to how I deal with those events. I had no choice to hold off on that. I was forced to think about all of those times as they came up and deal with them. So I did.

Take care all.


  1. Well said. I also experienced anticipatory grief before Paul died. I agree that over time, changes in their attitude effects you as a spouse and you grieve for "what was". My husband wasn't placed because it wasn't necessary, but even though he wasn't placed, he was more like a child instead of a partner. You said it much better than I could. I also think your journaling and email sharing has helped you "weather the storm". Too many people keep things "inside" instead of sharing. Good job.

  2. The books you read are WRONG. There IS such a thing as anticipatroy grief. It is important for health care professionals to recognize it and allow the grieving patients and families to get the help that they need. No one should be made to feel badly about their own reactions to grief and loss. With dementia, there are losses occuring for everyone involved and those loses go one for years. A good dementia support group, counselor, or phsychiatrist should help with grief and loss issues. I know you wrote this in August, but I hope you got the help you need and that someone reading this blog will not feel abnormal.

  3. It is too bad this comment was made by someone who wouldn't leave their name. Yes, the books are wrong. Especially with any very long term disease that lasts years or even decades. Dementia is one of those diseases, but not the only one.

    It is too bad that Anonymous didn't read further. I did get the help I needed. Hospice provided a great deal of support, including private visits with a therapist, for more than two years. And I'm one of those people who can get help with journaling.

    I have probably been where Anonymous is now, and I'd like to report now, in February 2013, it does get better.