The Imperfect Caregiver

For seven years I was his constant companion. The one he railed against and accused of trying to poison him. The one he insisted was his best friend on the good days when he was lucid.

“Without her I’d be a gonner,” he would say.

In the beginning I was his chauffer taking him to his many doctor appointments. At first we took the 40 minute drive over the mountain to the VA hospital every three months.  As his various ailments, including dementia and Parkinson’s disease, progressed the appointments came more often.  Dysphagia came next. He could no longer swallow properly. His diet was limited to pureed food and thickened liquids. He had trouble swallowing his saliva. Aspiration pneumonia resulted in several long hospital stays weakening him further and requiring doctor visits once a month.  Then he had a heart attack and a pacemaker was inserted. Blood clots developed in his arm as a result. Frequent blood tests to monitor his clotting ability meant more trips to the hospital. Eventually we were going every week.

He continued to fail and eventually he entered home hospice care and we no longer made the drive.

He was hearing voices again and becoming more delusional as the dementia progressed and the medication he had been taking since his early twenties for schizophrenia began to lose effect.  Still, we prayed for a miracle comeback. He’d done it before. We’d think we were losing him, prepare for the worst and just when we began to lose hope he would gather the inner resources and strength that had defined him all of his life.

He’d gone from farm boy to defiant resister of the Gestapo who had taken over his country. He moved to America as young man to start a new life. He enlisted in the Army to serve his new homeland. It was while in the service he had his first psychotic break.

This brilliant man who spoke seven languages and held advanced degrees in literature and mathematics would never be the same. Electric shock treatments, ice baths, experimental treatments and increasingly strong antipsychotic drugs robbed him of memory and kept him sedated at all times. After thirteen years he was released. He married and raised two sons. He was a hero in so many ways.

As he began to fail I did too. Sleepless nights, constant stress, the guilt that came with knowing I couldn’t save him took its toll. The two of us were barely functioning.

I fed him. Changed his soiled Depends. Wiped his bottom. Bathed him. Dressed him. Sat up all night listening to him breathe.  The night he died Mike and I sat with him, holding his hand, doing everything we could to keep him comfortable.

In the early hours of his 83^rd birthday he took his last breath.  This amazing man who had challenged me in so many ways and taught me so much about what real strength of character looks like was gone.

It took a while for the tears to come.

“What’s wrong with me?” I asked my husband.

And then it started. A slow trickle at first, followed by the first stabs of grief. I cried so long I wondered if it would ever stop. When it finally did, I wiped my eyes, blew my nose and started over again and again and again. It was only after I had exhausted my tears and my body that I could face the awful truth. It was not only grief that brought me to my knees. It was the agony of relief. His suffering was over and that meant I was finally free.

Intellectually I know my feelings were normal under the circumstances but there is still a little voice inside that continues to ask, “What’s wrong with me?”

I continue to ask for your support and comments in response to the Dr. Phil Challenge to use his resources and the Dr. Phil Foundation to establish a grant to offer real help to caregivers most in need.

To Contact Dr.Phil and add your voice to mine click on the links below.

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