Dealing with Alzheimer’s in the Family

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Caregiver in a nursing home can be grueling work, but my aunt loved it. In one of life’s cruel ironies, she died soon after retiring to take care of her husband, who is developing dementia.

The great responsibility for his care fell suddenly on his children and grandchildren, and they’re struggling with it.

I texted this video to a couple of my uncle’s daughters because it provides invaluable information and insight into the myriad causes of Alzheimer’s and the unique way its symptoms manifest in each individual. It also explains why diagnosis by a physician is critical – turns out, some people appear to have dementia, but the cause of their cognitive decline isn’t Alzheimer’s and may be reversible.

The speaker, Tammy Pozerycki, owns Pleasantries, which operates adult day care centers in the greater Boston area. In 1906, Dr. Alois Alzheimer, a brain researcher, first identified and described the disease. “It’s 2018, and we have no cure,” said Pozyercki. This places the burden on caregivers to manage the disease.

Full disclosure: her presentation was sponsored by Boston College’s human resources department for the benefit of employees. This blog is based at the Center for Retirement Research at Boston College.

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1 comment
Marguerite

Thank you for this blog, Kim. Your aunt lived a very purposeful life. This brought back so many memories of my mother in her last years that were both sad and meaningful. The woman giving the presentation, Tammy, was very knowledgeable in her insight into the vagaries of this heartwrenching disease.

My once clear eyed, no nonsense, common sense, vibrant, wild Irish mother had disappeared before my eyes and in her place, a much more subdued, silent person, devoid of memory. There were the repetitious motions as well, that many dementia patients experience. Constant rolling back and forth in her wheel chair and, most painful of all, the sundowning episodes, when she would desperately insist she was looking for a place to live and wanted to “rent a cottage.” These were almost unbearable to witness. And, while I knew they were all symptoms of the disease, it was so hard to absorb emotionally. Shocking and so difficult to come to terms with. Just a few of the many cruel twists and turns of this devastating illness.

When you are close to someone it is difficult to recognize the vagaries of dementia. Especially if they are very old. It just seems like quirky behavior in the early stages. After she experienced several falls in which she broke both hips and a shoulder, the last fall caused a fractured pelvis from which she never recovered. From that point on she was wheelchair bound and well into the beginnings of late stage dementia, at 95 years old.

I was spared having to admit her to a nursing home while she was in rehab. They realized her state of mind and admitted her to the Alzheimer’s ward. She thought she was still in the hospital.

An institution is not the best answer (they all have their problems) but there comes a point when it is the only answer. The caregiver just takes on a different role. You become a vigilant advocate.

In the end, it is love, kindness and gentleness that is the key to caring for a loved one with dementia. My blessing is that my mother recognized me right up to the end. I’m not sure she still realized I was her daughter and she stopped addressing me by name, but she would hold out her arms to me when I would come into the room and we would embrace. She knew I was someone who loved her and belonged to her. I still do. She’ll always be a part of me and hold a special place in my heart.

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