The Worst Part of Caregiving
For you, the caregiver or spouse of the caregiver, the worst part of Alzheimer’s in your house is not the physical disease. It is the fact that it demands daily presence and work on your part. The daily-ness of it is what will get to you. And the “little things” will bother you much more than the major problems.
The Daily-ness of It All
The worst part of having Alzheimer’s in your home is not the sickness itself or any specific manifestation of the disease. You’ve heard enough about Alzheimer’s even if you just half-heartedly listened to several of the hundred reports on the daily news. You’ve heard about the change at the very core of a person who becomes struck by this hideous sickness. You’ve heard about the forgetfulness, the wandering of mind and sometimes body; the loss of awareness, the lack of interest, the shut down. You’ve heard about the incontinence, the Depends, and the need for constant physical care. In general, you know the symptoms. Probably at least six of your friends have a relative suffering from Alzheimer’s. If you start to ask, you’ll probably find at least two or three acquaintances that are actually caring for a parent with Alzheimer’s!
If Alzheimer’s comes to your home, the worst thing about it will be the daily-ness of it. Alzheimer’s never gives up. The symptoms never go away. Likewise, the need for care never goes away. If Alzheimer’s comes to your home, you will have to deal with it every single day. There is no vacation, no weekend break, no holiday. It is constant in its grasp of your loved one. Therefore, your election to be caregiver is a choice to deal with this constantly.
Anyone can rise to the need of taking care of a sick parent. But it takes courage, endurance, constancy, perseverance, and heroism to commit to daily care without ceasing or any end in sight. We can all care for an hour, for an occasion, or even for a year or two. But to care daily – every single day, for a long, open-ended time is true heroism. It is exactly this daily caring that Alzheimer’s demands. It not only takes the life of its immediate victim. It also demands much of the life of whoever chooses to care for its victim!
- To change your mom’s Depend is a nuisance; to
do it every single day is a hardship. - To shower your mom is a nuisance; to do it
every single day is a hardship. - To brush your mom’s teeth is a nuisance; to do
it every single day is a hardship. - To dress your mom is a nuisance; to do it
every single day is a hardship. - To feed your mom three meals is a nuisance; to
do it every single day is a hardship. - To clean up after your mom is a nuisance; to
do it every single day is a hardship. - To see your mom decline is always difficult;
to watch it every day is a hardship.
When I went to work after post-grad school, I quickly saw the blessing of variety. I vowed not to be in a rut, having a single job to do every day. I sought and found variety. Recognizing the kaleidoscopic aspect of life, I cherished a degree of complexity in my life. I did not want everything to be blue or red or magenta. I wanted to see them all, whether sequentially planned or randomly chaotic.
To a great degree I’ve been able to live this aspect of my life dream. But I notice that my wife does not have this luxury at this time in her life. As the primary caregiver to her mother, Penny is caught in a single-focus life. From when she gets up in the morning until she goes to sleep at night, the care of her mother is her single focus. She can be shopping or catching a rare and quick lunch with a good friend, but always on her mind is her mother and what she must do for her. It is the daily-ness of the disease that exacts from the caregiver a constant and daily focus of concern, worry, caring, and serving.
Even when she goes to sleep, my wife is burdened with the thoughts and worries of her mother’s care. A baby-monitor sits on the night-table next to her bed, ready to alarm her if Mom gets up in the middle of the night and falls or tries to wander off.
Every single day. Every single night.
How I Cope
So how have I coped so far? One answer (I explain 8 coping tools in this book) is found within that second definition above: “to face and deal with responsibilities, problems….” Exactly. I cope by facing and dealing with both the responsibilities and the problems. If I focus on just the problems, I will become negative and bitter. But if I balance the problems with a sense of responsibility, then I can cope. Penny and I constantly respond to people who ask how we do it with this simple statement: “This is what you do for your family.” Mom is family. So we take care of her because she needs taking care of. This fundamental sense of family and a sense of responsibility to family get me through many a day of Mom’s sickness.
A sense of responsibility is just one tool for coping. Another attitude, which I believe to be essential, is admitting. I admit that this sick woman coming to live in my house is a problem. For some strange reason, the word “problem” has disappeared from modern speech. Perhaps it is because people don’t like to face difficulties, so they don’t even accept the word “problem.” Now we seem to have nothing but issues. Well, dealing with Alzheimer’s is much bigger than a mere issue. Believe me. It is a Problem. With a capital “P.”
You will not cope with Alzheimer’s in your home if you do not see it as a problem on one hand, and balance it with a sense of responsibility on the other.
A Prayer for Courage
Lord, I’ve always been told that I would never be saddled with more than I can handle. Well, thank you for that assurance. In my mind I can believe it, but in my heart I’m worried. My patient can live for years with this disease. And the caring must be day after day after day. Alzheimer’s doesn’t take the weekend off or take a vacation. I’m scared. I’m afraid I may not have the perseverance to continue this caregiving for years. Just the thought of doing this every single day for years is daunting.
How am I going to feed her every day, for years?
How am I going to bathe her every single day?
How am I going to dress her, every single day?
Actually doing this each day is not the problem. It’s the very thought of having to do this that scares me. Give me courage, Lord.
How will I talk to her distorted mind every single day?
How will I smile at her unresponsive face every single day?
How will I say, “I love you,” when the words are never returned?
Actually doing this each day is not the problem. It’s the very thought of having to do this that scares me. Give me courage, Lord.
Give me courage.
Amen.
2009 by Joseph Skillin
