This scenario and others subtitled with a generic man’s name are fictitious. However, they are based on accumulated understandings about husbands either depicted in literature or real life.
My name is Ken. My wife’s name is Darlene. A new reality is never easy, because its conditions seem unfathomable. Especially when we’re not ready.
Isn’t it interesting how often the word “institution” is avoided by the medical community? I don’t blame them. All I can think of when I hear that word is a large building or facility in which many people live or work. Or both.
In accordance with specific rules and behavioral expectations.
Another image that comes to mind about institutions is overbearing efficiency, and orderly ways to work with large groups of human beings. For many men my age, the example that comes to mind is the military.
I’ll never forget how impressed I was with basic training and army operations in general. The management of barracks, food service, clothing and equipment, cleaning and maintenance, training schedules, medical and safety precautions, and coordinating our transition from civilian life to becoming soldiers.
While military institutions are efficient and tailor-made for training large numbers of people to participate in war, they are also dehumanizing.
Recruits were prepared to become cogs in a machine that would effectively fight similar machines sponsored by the enemy.
Reflecting on those early days in the military, I remember feeling scared, disoriented, homesick, and resentful. I resented losing my independence. My sense of individuality. My security as a member of a loving family and community.
I naturally got over it, but it was not easy.
The army knew I would get over it. In fact, many people learn to accept military life as a new kind of family. A new security with different ways of thinking about community.
That’s good, I guess.
But an ultimate acceptance of a new way of life leaves those left behind with feelings that range from proud to a sense of abandonment.
My wife Darlene knew about the military. Her father was in the Marines during World War II and killed on Okinawa.
Her mother Betty remarried but Darlene and her sister were treated too sternly by their stepfather. He was never physically abusive, but more a demanding martinet than a loving presence.
During the year and a half we dated, Darlene and I talked about her life. My own family was warm and loving.
The previous time I spent as a draftee in the army was something I coped with, but never adopted as a way of life. I was every bit a “citizen” soldier, having done my duty as expected and moving on with my life.
Darlene and I aspired to creating a loving family like the one in which I grew up. And we did. Two boys and a girl. Healthy, few problems in school, and a happy life together.
In her 60s, Betty was diagnosed with Alzheimer’s. As her dementia worsened, the stepfather vacated his spousal responsibilities and initiated a divorce. That left Darlene as the primary caregiver. Her sister lived in another state.
I did all I could to help, which involved financial assistance when Betty finally had to be checked into a care facility.
An “institution.” In every sense of the word.
The entire experience was awful. No money was available to cover residential costs. Eventually we had to seek Medicaid coverage.
The authorized facility was large, dramatically understaffed, and smelly. Betty sat in a wheelchair all day. We noticed she was poorly groomed. Essentially ignored by individual staff members also responsible for nearly twenty additional residents.
Doctors told Darlene there was a good chance she would be afflicted with Alzheimer’s too. Heredity, you know.
They were right. A few years later in life than when it attacked her mother.
Given everything she endured taking care of Betty, Darlene was petrified about what might happen to her.
I was her only lifeline. Her only “champion.”
Darlene apologized repeatedly for what I was facing. And, knowing our financial situation, knew we had few options in terms of hiring outside assistance. For hours we talked about how to let her stay at home if possible.
About how we might find friends and other relatives to help. How to receive assistance from our sons and daughter without burdening them too much.
It was exhausting.
But I tried to stay strong for her. I read everything I could on caregiving at home.
Over time I found a few answers. Hints in books, literature produced by organizations like the Alzheimer’s Association, ideas from friends who faced similar challenges.
I even located a few friends of my wife who had available time. They were willing to give me a break occasionally when the situation required it.
But then it came time to put elevated security locks on the outside doors. Do the best I could in the kitchen. Install a chair lift because of Darlene’s back pain going up and down stairs.
Clean. Make the bed. Play old DVD movies she enjoyed. Then play them again. Many times.
I was never one to pay much attention to Darlene’s side of the closet, her cosmetics or lingerie drawers. But I learned. The friends who offered help took care of her hair, and I drove her to the salon when we could afford it.
Then she forgot how to use the shower and flush the toilet.
With each Alzheimer’s stage she entered, I felt pangs of anxiety compounded by oppressive claustrophobia. It felt like my world was closing in.
With each breath I felt less on top of the situation. A friend finally said, “It’s time.”
I knew she was right. My wife could no longer stay in the home she loved. I had to break my commitment to her. At this stage of her cognitive functioning she would not, could not understand.
With the help of one of our friends, I found a memory care home, one of the many I had already checked out. It had a vacancy. Smaller and better staffed than others. And it smelled clean.
Nevertheless, it was still an “institution.” With schedules, rules, supervision, tidiness.
So, I made the necessary arrangements, signed the contract, and drove my wife to a place she never wanted to go.
A place I didn’t want her to go.
It was the hardest thing I have ever done. And I felt as abandoned as I’m sure she did.
She did not understand. Why was I doing this to her? All she wanted to do was be with me in our home.
Continue to seek ways to take care of yourself.
©2020 Stu Ervay – All Rights Reserved
One thought on “22. Ken”
I thought this one was especially good. The way you described Ken’s experiences as Darlene’s illness progressed made him seem very real to me. Like someone I knew.