Some decisions are harder to make than others. And usually the most difficult decisions must be made in the most stressful circumstances. No wonder we don’t always choose the best solutions to the agonizing challenges of Alzheimer’s.
Drawing a line in the sand in the beginning of the caregiving journey isn’t a good idea. It leads us to believe we have no options. The truth is, we always have options.
My father was losing his sight due to macular degeneration, but he refused to let “strangers” come into their home to help him care for my mother. He also vowed never to put her in a care facility.
The second choice he justified on the basis of his experience with his own mother many years earlier. When my grandmother was bedridden as a result of a stroke, one or another of my father’s siblings arranged for her to live in what was then called “a nursing home.” My father visited her one time, with me and my sister. We wandered the halls and finally found her room by the sound of her crying “Help me help me help me.” We entered to see Grandmother lying naked on top of the bedclothes. Dad’s first reaction was a shout at me and my sister: “Get out!” As we scuttled out the door, we heard him cursing at all the nurses and doctors who were nowhere close enough to hear him. Years later, I wasn’t surprised to hear his promise to keep Mom out of a care facility. She was better off at home with him, he said, just the two of them.
So I stepped in to help care for Mom. Someone had to. Untrained, inexperienced, and, yes, frightened of what the future might look like, I spent most of my days at their home, returning to my family after dinner. As grueling as the schedule was, as difficult as the challenges became, Dad and I managed. But only with the help of God. He alone could have helped me come up with the practical ideas I came to call miracles. I tried out first one and then another and then another until the problem of the day—or the hour—was addressed. With His help, we not only survived, but Mom was able to enjoy pleasures we thought were long past.Still…I should have pushed Dad harder to get professional help. A trained aide would have added greatly to Mom’s safety, especially with bathing and other issues of hygiene. I was surprised to see that, when Mom did have to be hospitalized for a broken hip, she gave the nurses much more cooperation than Dad and I had enjoyed. Later, because she couldn’t do the rehab necessary to walk again, the doctors said she must go to a care facility after all. We feared she’d fight the caregivers there, engage in the long term shouting matches we had experienced at home, or refuse to eat, drink, take her medications. None of that happened. Mom was calmer and seemed much more comfortable at Golden Acres than she had at home. Dad visited every day. He made lots of new friends among the “strangers” at the home, and was free to enjoy more activities both at home and away than he had in years.
So Dad’s decision to reject outside help worked out ok. But in hindsight, I see that everyone—Mom, Dad, and I—would have been better off with the additional expertise of a professional. No less important, Dad and I would have benefitted greatly from some time away from caregiving. Three or four hours a week in the beginning, three or so days a week as the disease progressed—having that kind of help would have allowed all of us to enjoy more of Mom’s last years.
In addition, I see that, because the doctor overruled Dad’s decision to keep Mom out of a care facility, her last weeks were comfortable for both of them. Someone else, not Dad or I, talked her into eating and taking her medications. Someone else took care of her hygiene. Which left Dad with the opportunity to just spend time with her. He could see for himself she was not upset to be away from him. He could see her needs were met. And he could see in her eyes that, even in a place strange to her, she still knew him.
My point is that lines drawn in the sand at the beginning of a caregiving journey may be erased. Tides such as additional information, progression of the disease, or just clearer thinking can wash away the logic or emotions of early decisions. What’s important to remember is that we always have options. If we can’t see them, someone less involved often can.
We have to believe. Believing we have choices helps us find them.
Save me, O God! For the waters have come up to my neck. I sink in deep mire, Where there is no standing; I have come into deep waters….
Hear me, O Lord, for Your lovingkindness is good;
Turn to me according to the multitude of Your tender mercies. (Ps. 69:1-2,16 NKJV)
Father, please give us wisdom to care for our loved ones. When we struggle to help them, let us seek Your guidance. Remind us that You are always with us, and Your desire is to give us and our loved ones abundant life. Thank You, Lord.