A Caregiver’s Story

Mine is a cautionary tale of what not to do. I’m sharing not for my glorification but in the hope that someone reading this will benefit and know they are not alone.

For 13 years, I was involved with caring for my father. In 1998, he sustained a closed head injury so damaging that he spent four months in an amnesia state housed in the locked unit of a nursing home. Slowly, as he regained some mental functioning and as Medicare coverage was coming to an end, he returned home. He could perform all the habits of daily living, but his emotional and psychological equilibrium ebbed and flowed with the tides. It took a couple of years for this to level off. My parents were able to resume a fairly normal life. What we didn’t fully understand at the time was that Dad also had dementia. Our wild ride was just beginning.

By 2008, my mother no longer was able to care for herself. Her falling episodes rendered it necessary for her to receive nursing home care. When she left home for the last time, Dad was alone, completely and utterly alone — except for me.

So began my journey of living several full-time lives concurrently; a wife, a mother, a grandmother, a person with a career and a caregiver. The last few years of Dad’s life were an endless array of medical appointments, in-home evaluations with service providers, or hands-on assistance bathing him, cleaning his home, preparing meals and being his confidante. I drove thousands of miles between his home and mine. My life was dictated by the needs of an elderly man with dementia.

My husband and son were allies as I pulled out all the stops in surrounding Dad with personal care attendants. I was the general forging battle plans against the advancing disease. I was continuously striving to give Dad good in-home care. For a long time, he was okay. But I was not. I just kept going, pushing, doing. I didn’t recognize my own unraveling.

By 2010, Dad’s dementia had reached the stage where his delusions were his reality. The following is from a passage I wrote at that time, as I attempted to deal with all the unpleasant emotions his condition stirred in me:

“One day, Dad told me, ‘I got a new baby boy. I want you to take me and him to visit your mother. She’ll like that.’ As he said this to me he was smiling with the joy any new father would feel, except in this case, it is just plain sad. I am sick to my stomach.”

After nine decades of independent living, being a responsible reasonable father and husband, the end was coming. He began wandering off trying to find imaginary family. He searched for fishing boats and businesses he was so sure he owned. He’d ask complete strangers to give him a ride to the bank and on the way tell them he’d be withdrawing millions of dollars. Dad needed someone to watch over him on a full-time basis.

But this type of care, known as custodial care in the health care industry, is not covered by Medicare or Mass Health. If the sick person is able to walk, feed themselves, go to the toilet, dress, and perform other basic functions, they are not candidates for nursing home care. My parents did not have any other form of health insurance or financial resources to purchase assistance. The total responsibility for custodial care falls to family members. I couldn’t manage his advancing disease any longer and I could not bring him into my home. I’d lie awake at night tortured by how to take care of Dad. His disease had become too much for me, and he had become a danger to himself. Something would have to give.

That something came in February of 2011. He developed pneumonia. This allowed the Medicare system and me to have him hospitalized for three days and then admitted to a nursing home for a limited period of time. The complicated and multilayered processes that Medicare and Mass Health programs require cannot be described easily. Suffice to say, with tremendous emotional agony, I negotiated government and health care regulations, securing the professional 24-hour care he now needed. Dad was transported to the nursing home.

He railed against me: it was my fault; I was keeping him from his new family, his millions of dollars, his fishing business and the store he owned. He told me I wasn’t going to get anything. I had failed him by placing him at “the end of the world.” He called the nursing home a “funeral parlor.” In spite of his delusions, there were moments of complete clarity. It was heartbreaking.

After a few weeks, it was as though he gave up living. Although it was never discussed, he knew he wasn’t going home again. Those weeks were agonizing for us both and remain a pulsing open wound in my soul. I watched his will to live slide away moment by moment. I still feel tremendous guilt. Dad’s battle ended in May 2011.

One in every three senior citizens will develop some type of dementia. Alzheimer’s is the sixth-leading cause of death for seniors. As for the caregivers, 1.5 million caregivers provide 17.5 billion hours of care per year, according to the Alzheimer’s Association.

Dad and I were a winning team for a long time. But when the disease ended his ability for any rational thinking, I really needed more help than my husband and son could possibly provide. I needed professional support, but did not ask for it.

There is no cure for Alzheimer’s. It is progressive, life-altering and impacts everyone in its wake. Without proper support, caregivers are in jeopardy of breaking down under the strain of the disease. When the caregivers break down, the disease victims are placed in jeopardy, also. The ripple effects throughout an entire family are profound. As I look back through the veil of time, I realize I should have reached out for help — help that is there for the asking.

No one is immune from Alzheimer’s. People from every walk of life are afflicted. Consider Glenn Campbell, Ronald Regan and Pat Summit. The odds are very high that you or someone you know will have a personal experience with this devastating disease.

If you are facing the challenges that come along with an Alzheimer’s diagnosis, ask for help right away; don’t wait. Reach out to your local Council on Aging Office for contact information. You should also visit www.alz.org or call 800-272-3900 (the hotline is open 24 hours a day, seven days a week, 365 days a year). It really is okay to say, “Help me.”

By Marilou Newell