Oct 26, 2012

Double Stigma Around Dementia and Death

"The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest."
-- Thomas Moore

By Bob DeMarco
Alzheimer's Reading Room

Double Stigma Around Dementia and Death | Alzheimer's Reading Room

The Alzheimer's Society (UK) has published a new research study entitled, ‘My Life Until The End: Dying Well With Dementia’.

This is an interesting study that is well worth reading.

The study contains lots of good information, but this caught my attention.
Despite evidence highlighted in the report that two thirds of the public want to die in their own homes, in 2010 only six per cent of people with dementia did. This is compared to 21 per cent of the general population.
In a recent discussion with Rudy Tanzi I told him one of my greatest worries, a fear actually, was that Dotty would die in the Hospital, or away from home in a care facility.

I did discuss the end of life with Dotty more than 20 years before she died. Her greatest fear, the greatest fear of her life, was that she would end up in a "home".

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I'm not sure what a "home" looked like when Dotty was young but it must have been "ugly". My father, Frank, had the same fear.

Both of my parents wanted to die at home. They both did. They both died in the same room, in the same spot, and in a bed provided by Hospice. Dotty died twenty years after my dad. They died 20 years apart in the same place.

I did not explain to Rudy about my fear in great detail. However, My fear centered around the fact that Dotty wanted to die at home.

Dotty told me, "I don't want to go anywhere, I want you to take care of me". She told me that less than 3 weeks before she went to Heaven. It was not the first time she told me she did not want to go into a "home". It was the last.

I knew that if Dotty ended up in the Hospital, or even in the critical care unit at Hospice, she would be filled with fear and anxiety. This would have been exacerbated by her dementia.

I cannot tell you how many times I thought about Dotty's end of life over the last 8 years of her life. Many times for sure, and every time she was sick.

I remember feeling immense relief when the Hospice came into our home. I knew the chances that we would make it were very good. We did it.

I want to say here though, I now understand that it is not possible for every dementia patient that "wishes" to die at home, to die at home.

In many many cases the "sole" caregiver can no longer care for the patient on their own. They just can't do it, and it would be wrong for them to try when they reach the point when they know they can't.

I gave this issue great thought. I knew that it was possible that there could come a time when I would no longer be able to care for Dotty on my own. I had decided that no matter the circumstance, when the time came to make any decision I would always do what was best for Dotty. I would not let it become about me.

Caregivers all over the world must deal with this issue sooner or later.

My beliefs on this issue are crystal clear. Always do what is best for the dementia patient.

Doing "what is best is an act of love". The act of caring, and of making difficult decision, are acts of love.

Do not blame yourself for doing what is right and best. If necessary reverse the roles and ask yourself, what would your loved one have done for you? Would they have done what was best for you?

This is all we can do.

No one act or decision should define any caregiver. It is the cumulative acts we perform each day that define us.

"The ordinary arts we practice every day at home are of more importance to the soul than their simplicity might suggest." 
-- Thomas Moore

Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 5,000 articles. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room