Eldercare Voices: Raising Family Caregivers’ Voices in Older Americans Month and Beyond

On this last day of Older Americans Month 2017, organized by the Administration on Community Living with the theme “Age Out Loud,” we are honored to highlight the year-round contributions of family caregivers.

Sharon Hall

I never intended to be a family caregiver in my retirement years. The plan was to tour the country with my husband in a recreational vehicle, living in places of beauty throughout America. It had been my goal for over 20 years. One thing you learn as you age, however, is that nothing is written in stone. Flexibility is needed to adjust to new situations.

In the fall of 2011, my mother was caring for my father in South Florida. We were able to provide for some help for her with his bathing and dressing, but the stress of caretaking took its toll on her and she ended up in the hospital herself getting a pacemaker. I knew the day was coming when she could no longer sustain her caretaking alone. When they had visited us in Georgia prior to that, I had taken my mother to several independent living facilities to see what they offered. I had visited 10 and narrowed it down to three that I thought she might like and that they could afford.

When my brother called to say Mom was in the hospital, we took off to get down there and make some family decisions. My brother had spent one night with Dad and realized that for Mom to continue caring for our Dad was simply unsustainable. We decided that our parents would move to Georgia to be near me. I contacted the facility I knew Mom liked the best, secured an apartment, and gave them a deposit. In the span of two weeks, over Thanksgiving, we moved my parents to my home for a month while Mom recuperated. After that, my parents moved into the independent living facility on New Year’s Eve 2011.

My Dad’s health was seriously deteriorating. When we realized his kidneys were failing, he entered home hospice in mid-January 2012. He peacefully passed away, at home, on Feb. 2, 2012. Mom continued to live at the independent living facility. She then started to have memory issues, and tests found she was having mini-strokes. She did not feel secure living alone, so she moved in with us in August 2013.

I was working full-time, but with some flexibility from a home office. I truly had thought I could do both – care for her and work. But the actual experience helped me decide that it was too much, so in October 2013, I retired. I had become a full-time caregiver.

Like most caregivers of very elderly parents, I began my journey thinking it would be relatively manageable. I thought I would resume my long-planned retirement activities when my husband retired. After all, that was only four years away, and Mom was already over 90 at the time.

Life has a way of progressing at a different rate than you expect. In the fall of 2015, my husband had been exhibiting behavior that was very different than his normal. I attributed that change to “getting older,” “stress at work,” “seeing retirement getting closer” and a plethora of other explanations.

I had been an active member on caregiving.com and chatted with friends who were caregivers. One of them posted a video during frontotemporal degeneration (FTD) awareness week. My mother-in-law had died of Pick’s Disease, the older name for one variety of FTD, so I thought I would watch the video. My life stood still. Those odd behaviors of my husband’s were suddenly clear. He had inherited his mother’s FTD. Time stood still.

I voraciously learned all I could about the disease. I called one of his sisters to ask if his mother had exhibited similar symptoms, as I had not known her prior to the later stages of her disease. She had. My fears were rapidly becoming reality. A huge sense of relief – followed by grief – washed over me, as I realized my loving husband was not changing intentionally, but rather from a degenerative brain disease with no treatment and no cure. He was dying.

We were very fortunate to have him evaluated at the Emory Brain Health Center in Atlanta in a short amount of time for a verifying diagnosis. He, in fact, had FTD. He was still working fulltime and driving. The doctor suggested he stop working, file for disability, on a compassionate allowance and stop driving.

In a span of three weeks, I was now, suddenly, the full-time caregiver to two people of two generations with different forms of dementia. I had to take on the tasks of getting a new will, power of attorney, HIPAA power of attorney, advanced directive, selling a truck, a car and a travel trailer, buying a new car and making peace with the fact that my retirement had just become something very different than what I had long anticipated.

I now had to hire out chores my husband was expert at doing in the past. He could no longer start a project and take it to completion. My mother-in-law had died of this disease, yet I did not know anything about it. I was determined to change that picture.

I became an advocate for FTD. I took the training classes through The Association for Frontotemporal Degeneration to do volunteer work, to visit facilities and discuss how FTD is so very different from Alzheimer’s Disease. I talked to anyone and everyone about FTD. We still went out to eat, we just explained FTD to the waitstaff and educated them on the fact that over 100 syndromes cause dementia. Alzheimer’s might be the elephant most everyone is now aware of in the room, but I was determined to make FTD a household word that had nothing to do with floral delivery.

I started an FTD chat on caregiving.com for caregivers of those with the disease. We became a “family” quickly, as FTD is a difficult disease to manage, with no treatments. I also asked a wonderful professional, Dr. Geri Hall, of Banner Alzheimer’s Institute to join me in a monthly podcast to get information to this underserved population of FTD caregivers. Denise Brown, of caregiving.com opened, her site to us and allowed us to share resources freely and openly to support this community.

I have since been asked to blog for various sites on this journey through FTD. The Huffington Post picked up one of my blog posts, and it went viral across the world. I was shocked that one person could make an impact in advocacy at this level.

I am now proud to be involved with the National Research Summit on Dementia Care, making the voice of the caregiver heard in our national dialogue on dementia care and the needs of family caregivers.

I continue my grassroots efforts, locally, to educate my community on FTD. I have found my “voice of retirement.” My new goal is solidly placed: I will make a difference for all those with dementia and their caregivers. I will especially advocate for those with FTD, as it can affect families of those who are under 40, raising children in a very different world than they expected.

One is never too old to make a difference in the lives of others. I will continue to Age Out Loud, proudly and with gusto! Life, even in retirement, can bring rewards, you just need to find your passion and voice. You need to look in unlikely places and not be rigid in your pursuit of a rewarding retirement.

Sharon Hall is a family caregiver living in Cumming, Georgia, who retired from her career as a sales executive after 25-plus years to devote her energies to the increasing care needs of her mother and husband, and to advocate for greater awareness around Frontotemporal Degeneration. She and her husband are currently working to produce a 2018 calendar called Celebrating Life with Family, Friends and Fun to benefit the Association for Frontotemporal Degeneration, featuring persons diagnosed with FTD.