SUPPORT GROUP HAS REFUGE FOR WEARY

When dementia comes home

OCTOBER 2015

It looks like my husband has come up with a permanent solution for his agitation over his wallet, which to me shows he still has some of his once outstanding problem solving skills intact.

Yesterday afternoon he made some cryptic remark to me about something no longer being a problem for him. When I later go out to do some gardening I find, in our yard waste bin, his cash and then his wallet, tossed in there and somewhat covered up. I rescued it all and tucked it where hopefully he will not look and maybe this will end his constant consternation concerning money and his neverending fidgeting with his wallet.

2021

Almost immediately after Chuck ditched his wallet in the yard waste bin he replaced it with his old folding hunting knife, one that had a well worn leather case, which he then started carrying around on a daily basis and treating pretty much as if he had his wallet, making sure it was always within reaching distance if it was not in his hand.

I suppose it was comforting to him to have a well worn, smooth, familiar leather object to carry around. Kind of like a little one with a stuffed toy or a blanket.

And although it may have been comforting to him, it brought up an entire new level of anxiety in me.

My husband’s outbursts had not abated and now what I was hearing from him was how much he did not want me around, that he did not like me at all.

And although the greater part of me never believed he would actually hurt me or use his knife on me, there was still that tiny acknowledgement that in dementia cases there is always the possibility of yet another surprise, that something never before seen in the course of the illness will surface and catch you off guard.

And it was my husband with his new obsession with this knife and then the comments about me that took my anxiety up that extra notch.

It is a hard life, being a caregiver to a spouse with Alzheimer’s Disease.

Which is why I am a big believer in attending a support group if you are caregiving to someone with dementia.

No matter how close you are to your family, or how many wonderful friends you have to support you, unless these people are living in your house, with you, they cannot know what you are dealing with on a 24/7 basis.

The only people who will truly understand what you are going through are the people who have experience doing so. These are the people who get it, who know what is happening in your household and who completely and utterly understand the challenges and heartbreak you are witness to every day of every month.

At my support group we have had people come and then go over the years. Some stay for only a meeting or two, some stop coming after the person they cared for died. Each of us has our own reasons for wanting to continue or wanting to have nothing to do with a support group.

My group is split between those of us who have a spouse living in care, those of us with a loved one still at home and those who come despite having lost someone. All of us have something worthwhile to contribute in support of everyone else.

And we laugh a lot. There are always funny incidents we can relate about living with dementia in the house but, more often than not, we are laughing because our lives resemble nothing that may pass for normal.

Absurd is our new normal and who would have ever guessed that this was where we would end up?

And that is what usually sets us off. The absurdity of our lives is the big punch line, a punch line those of us who live this absurdity fully appreciate. Laughing at ourselves is a way to balance the sorrow and loss that haunts us every turn we take, whether our loved one is home, in care or has passed on.