Why Am I A Caregiver?

I’m a caregiver because my husband has Primary Progressive Aphasia, a rare form of dementia. As a caregiver, I participate in a program at Greenville Health System designed to assist caregivers with the weight of caring for a loved one with dementia. Today I’m meeting with the MSW (Master in Social Work) “caregiver coach” assigned to me. For purposes of the blog, I’ll just call him Coach. This is our second meeting.

The program is part of GHS’ Success In Aging Program (https://www.ghs.org/healthcareservices/medicine/geriatrics/centerforsuccessinaging/reach-program/). Following is a partial description of the program:

“GHS’ Memory Health Program seeks caregivers for patients with Alzheimer’s disease or related dementia to take part in a research study called REACH. REACH aims to improve knowledge and support for caregivers, thereby reducing stress and enhancing their ability to care for their loved ones.”

God only knows I need a reduction of stress.

My husband doesn’t have the most widely known form of dementia, Alzheimer’s disease. His is more rare, with only about 200,000 having PPA. There are about 2 million with some form of Aphasia.

The word Aphasia first came on my horizon in early 2014 after Martin had a visit with his primary physician. Coach tells me he has only encountered one other Aphasia patient; otherwise he would not know what Aphasia is. That is the story of my recent life, making it more difficult to carry out my responsibilities as a caregiver. After several years of trying to figure out what was happening to Martin, I often know more about the disease than the professionals do.

Coach gave me a manual “Dealing With Dementia: A Caregiver’s Guide”. Primary Progressive Aphasia is not even listed in the manual as one of the forms of dementia. The lack of understanding and recognition of this disease in the medical community is a form of frustration for me.

What is PPA?

According to Northwestern University where most of the research on PPA takes place, the symptoms are typically quite different from other more typical forms of dementia, which are recognized by cognitive decline. For the majority of individuals with PPA (approximately 60%), language is the only area of decline. For the other 40%, the changes in the brain will begin as changes to the language centers, but will eventually evolve to be more widespread across other areas of the brain and, in turn, result in decline of other functioning beyond language. PPA will lead to eventual loss of communication functioning in all domains of language — understanding others, speaking, reading, and writing.

There are dozens of different kinds of dementia syndromes. Something I was not aware of until the last few years. I’m still learning.

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