Authors

  1. DENNIS, BARBARA HANSON MSIR

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It did not bother me to be "the wife and mother" for many years-while I had my own career. With a Master's Degree in Industrial Relations, I worked as a fundraiser for the University of Illinois Extension Program in the 1990s, raising close to one-half million dollars in 7 years of grant-writing and campaign drives. Prior to that I'd worked for the state senate, taught university level classes, and conducted training programs in corporate management.

 

For 25 years after raising my children, I honed professional skills that I am proud of. I worked my way up from a meeting coordinator for the Illinois Psychological Association to President of Chicago Women in Government Relations.

 

Now, though, I am a full-time care partner for my husband, a retired professor, who was diagnosed with Probable Alzheimer's Disease (PAD) in 2000. And I feel the loss-of career and self-identity-profoundly. I feel the loss not only for myself, but for my 5 grandchildren who will likely never see their Grandmother speak from a podium or act in a play again.

 

Instead, the primary role they will see me in is that of caregiver. And it is a role filled with tedium. Grocery shopping, cooking, and paying bills are far from scintillating. I make countless doctors' appointments, and then accompany my husband to the neurologist, ophthalmologist, podiatrist, internist, cardiologist, endocrinologist, dentist, and social worker, each in turn since he seldom can go alone. My own stress-related conditions of high blood pressure, fibromyalgia, and high cholesterol require that I too see an increasing number of doctors, which means more appointments and more medications to manage. With these appointments come the interminable insurance follow up, collating and filing Medicare, Blue Cross and CIGNA insurance claims, and doctors'bills for both of us.

 

But most frustrating of all to me is that people do not believe my husband is ill. Because he is in the early stage of Alzheimer's disease, he is still quite articulate. He can talk about current events, and often appears quite normal, and so people have a hard time believing he has Alzheimer's.

 

I recently learned in my care partners' support group that others have the same problem. Family members and friends say, "There is nothing wrong with your husband. We all forget things." People who listen to his stories don't know what I know, though. I've heard these same stories for years and I know what he is leaving out. I don't say anything. I just smile and nod, usually. But sometimes I get angry at having to point out to friends that he has pathological markers on his brain that show signs of PAD.

 

Few people have any idea what this life 24/7 is like. I am expected to be interested in all of my husband's hobbies: Alzheimer's support groups and activities, gardening, travel, and movies. I need to be the "one-man band" that makes it all happen. Since we no longer own a car, I rent cars when we have to do something as simple as go to Home Depot. I make all the travel arrangements for the frequent trips my husband likes to take and I go to lots of movies when I would rather stay home with my feet up. As one of my fellow wife caregivers said, "I'm living two lives and it's exhausting." Another husband caregiver said, "I'm running as fast as I can to keep us in the lifestyle to which we've been accustomed."

 

Now all this may sound selfish and trite, especially from a woman who has a husband that seems to be "OK." He can, after all, still do all the activities of daily living, though he needs to be supervised and assisted with finances, medications, and meals. He is my best friend of 50 years, a dear companion with a sense of humor, a loving manner, and a solicitous attitude that may seem surprising to those who knew him as a more hard-boiled union official in the 1960s and 1970s.

 

But there are times when he is so clearly annoyed with my decisions regarding his safety, or my efforts to help when he is confused, that I just shrivel up inside. I know that caregivers have to learn to accept such behavior, but since I have not had a marriage with much fighting or anger, the flareups really put me on edge.

 

Fortunately, I do not have to stay home every minute. I can get away for a couple of hours at a time. I can go to the health club for a swim or to my doctors' appointments alone. I always keep the cellphone on. I use the phone and timers to remind my husband to do his blood sugar test for diabetes and eat if I'm out at noon. Once a week I get a 4-hour reprieve to run errands when the weekly housekeeper comes. And our sons and their kind wives have their father come for 4- or 5-day visits every few months, which is quite restorative for me.

 

As I've read more about the disease and my husband shares his feelings about the experience, I have developed a searing grief. This is a grief that doesn't go away. It is what one goes through as a caregiver for anyone with prolonged illness. Because you have not "lost" the person to death, you are not consoled in the same fashion as when death occurs. I didn't know what it was until I read Nonfinite Loss and Grief by Elizabeth J. Bruce and Cynthia L. Schultz. You must learn to live with grief day in and day out.

 

My dearest one's decreasing abilities, especially in the use of words, and my own loss of personal freedom to come and go haunt me. I am overwhelmed with the boredom from routine and frustrated with the inability to make personal plans that would take us away from the Northwestern University's Alzheimer's Disease Center hospital where he is so emotionally tied to a regular, ongoing Early Stage Alzheimer's group.

 

My faith has been my greatest support during the first 2 years of his illness. Despite this change in lifestyle, I thank God for this chance to care for the man who so expanded my horizons. However, last year when my husband was hospitalized and in so much pain, I got very angry with God for letting all this happen to us-to our marriage, to our families, to our lives.

 

As I see other friends in their 60s with freedom and energy, I am envious. As one caregiver I know said, "Whatever happened to the golden years?" Fortunately we are invited to many functions; our friends and family have not forgotten us.

 

As my husband's condition inevitably worsens, I know I will have even less freedom. I wonder how I am going to cope. I try to get out of the house every day. Warmer weather, regular exercise, and writing about my experience, are all helpful.

 

I have a strong support network. I rely on my faith, family, and friends when I am low. And I have a spiritual director, a 12-step sponsor, and a licensed counselor who are truly a blessing.

 

Yet the losses I feel intensify daily as my husband's abilities diminish. The challenge of living with Alzheimer's in the one you love is perhaps best addressed by this quote from Charles Dickens'Dombey and Sons:

 

And can it be that in a world so full and busy, the loss of one weak creature makes a void in any heart so wide and deep that nothing but the width and depth of vast eternity can fill it up.