Grief Before Death: When a Partner Has Alzheimer’s

New Year’s Eve is typically a special, joyous time in our lives. It’s extra special for me since I have two grandchildren with birthdays on December 31. But the New Year’s Eve of 2012 holds extra significance in my mind, since that is also the day my wife of 56 years died. My daughter and another granddaughter were with me at the assisted living facility when my wife died that afternoon. Later that evening, after making arrangements for the body and other details, we went back to my daughter’s house and celebrated the two birthdays. It wasn’t near as joyous an occasion as other birthdays, but recalling memories of their grandmother brought smiles as well as tears to the party.

The next few weeks were extremely busy, contacting people, planning funeral arrangements, etc. I was also working part-time so there was little time to sit and feel sorry for myself. Tears flowed freely at the funeral and memories of my wife often came crowding in. I met a grief counselor from Hospice for coffee. We talked about how things were going and whether I wanted to attend some group support sessions. I declined as I felt I was doing fine.

When the Grief Began

In retrospect, I think my diagnosis was correct. But my grief certainly didn’t fit into the usual pattern. The five stages of grief are generally listed as denial, anger, bargaining, depression, and acceptance. Each emotion is a response to the death of a loved one or one’s own imminent death. Why did I seem to move swiftly to acceptance after Donna’s death? Was it just my stoic Norwegian-German personality? Or might there be other reasons as well?

In my case, I believe the grieving had been going on long before Donna’s death. Twelve years earlier Donna’s personality took a sudden change. The doctor prescribed a mild anti-depressant which made a remarkable difference. Then she began to do strange things such as start water running in the sink and go out to work in the yard. She got lost while driving to places she had gone to for years. Her doctor administered a test for cognition and it was evident she was experiencing dementia or Alzheimer’s. While no formal autopsy was performed to confirm that it was Alzheimer’s, the symptoms were totally consistent with Alzheimer’s. Since her mother had also suffered with dementia or Alzheimer’s, it was not totally unexpected. Denial was not an option.

“As the dementia or Alzheimer’s advanced our roles began to change…”

As the dementia or Alzheimer’s advanced, our roles began to change. I stopped teaching at the university and doing tax returns at a law firm so I could be home with her. Over time I became the cook and she became the helper. Laundry, cleaning and other household tasks became too daunting or unimportant to her.

A minor auto accident led to the loss of her driving license. Fortunately for me, she was saddened by the loss of her license, but accepted the situation. I believe seeing what her mother went through years earlier caused her to resolve to act with grace if similar circumstances occurred to her.

Accepting Changes

The next year we moved from our home of 35 years in Worthington to Sylvania where our daughter and family lived. They had been spending many weekends driving to Worthington helping me with various efforts. The move allowed them to regain more control over their lives and also helped me out. On Saturday, my wife would go to my daughter’s. She loved to help with tasks such as peeling potatoes and folding laundry, as well as just visiting with our daughter. And this gave me time to take care of various tasks or to just be by myself.

The move also brought out other actions. Several times I found most of the pictures removed from the walls. Why? My wife said she was getting things ready for when we moved back home. I knew this was not unusual for persons with Alzheimer’s, but it still angered me. I had to carry extra clothing wherever we went, as incontinence became more of a problem and my wife refused to wear Depends. And she routinely removed pads that I had placed on chairs to protect them. This would anger me and once I severely sprained a finger while replacing a pad for the nth time. On a more personal note, abstinence became the new norm. While my wife still liked me to hug and kiss her, more intimate relations ceased. Sex seemed foreign to her and to persist would have made me seem like a rapist.

From 2000 to 2006, changes due to Alzheimer’s were gradual. The move to Sylvania in 2006 seemed to trigger a wave of changes. And in August of 2009 a major change occurred. Donna got a UTI that required hospitalization. Along with that she lost the ability for walking and speech. She spent a month in a rehabilitation center, plus some continued therapy after returning home. But the rehab didn’t restore her speech and walking abilities. Occasionally she would say a few meaningful words, but most things she said were unintelligible. And a wheel chair replaced regular chairs from then on.

I brought Donna home from the rehab center and began caring for her myself. I placed a hospital bed in the living room, complete with an alarm if she should try to get out of bed. I was able to hire a lady who had been an aide in a nursing home several days a week. She helped with care tasks such as bathing and gave me time to shop and do other tasks. But lifting my wife from the bed to the wheelchair and back was difficult. My daughter and I realized that it was probably best to look for a care facility. My wife and I had talked about this and had given each other permission to do what seemed best for all concerned.

A Gradual Good-Bye

In January of 2010 I moved Donna to an Alzheimer’s care unit in an assisted living facility. She received excellent care. And I believe she was actually better off there than at home. Being among other residents and staff, as well as the varied activities, provided more stimulation than simply being at home with me and the TV. I ate dinner with her each night and stayed with her until we got her into bed. Over the course of three years her health gradually deteriorated until her death on December 31, 2012.

So why didn’t I follow the usual stages of grief? I believe that I did, but mostly they took place prior to her death. Twelve years before her death I began losing my wife. Over the 12 years before her death I lost the wife who loved to cook, the partner who shared driving on trips, who loved to talk with me, tease me and yes, correct me when needed. The one with whom I could share my joys and my concerns.

“Her death was simply taking away the final piece, her physical body. The loving, competent, joyful girl I married had long left her body.”

Her death was simply taking away the final piece, her physical body. The loving, competent, joyful girl I married had long left her body. The time for denial, anger, bargaining, and depression had passed. The ending had been known for years, and I could not wish for her to continue in her condition. So acceptance was a natural next step.

Acceptance doesn’t mean forgetting. But it does mean moving on with life. Just as we celebrated birthdays on the day of her death, I needed to move ahead with living. I think of her often. And it generally brings a smile to my face.  Donna loved to tease me. Often she would say, “I came to bring joy to your life.” Indeed she did.