Caregiving 101: when patience is pushed to the limit in Daydreaming on the Porch

After caring for my mother for ten years , I learned many important lessons about diabetes, dementia and the extreme amounts of love, forbearance and patience that are required.

I had a lot of patience with Mom, but I wish I had been granted more of that vital quality. One of the most trying and difficult things that tested my patience, and I’m sure that of so many other caregivers, was Mom’s total incontinence the last few years. I don’t know how many times I had to lift Mom to the portable commode next to the sofa or at her bedside, donning my gloves and marshaling moist wipes and adult diapers. This could be any time of the day or night. Obviously Mom couldn’t help it, and for years she was able to let me know when she had an accident. But near the end she stopped doing that.

Most of the time I could handle this unpleasant task pretty well. I became very efficient and accustomed to doing it. It was my duty. I had assistance from the part-time caregivers who were with us most of the day, but I did most of the work.. Occasionally though, just after I had finished and everything was clean and ok, it would happen all over again, and I’d have to start over. Poor Mom knew I was upset, but what really upset me was if I had just lost my patience out of sheer exhaustion and frustration, particularly if it was 1or 2 in the morning. I might spontaneously yell or say angry things I knew I’d regret, directed not at her, but at myself, or just the whole situation in general. How many times did I find myself saying under my breath, “I don’t know how much more of this I can take.”

Sometimes you feel you’re almost at a breaking point, but you steady yourself, take a deep breath, and carry on. You have to, and the necessity and benefit of almost everything you do in caregiving provides the needed strength and determination. Whenever I had totally lost my patience, I felt terrible, of course. Mom was mostly silent when this occurred, helpless to do anything about that awful problem of incontinence which afflicts most of us as we age. For someone in their 90s it’s very difficult, if not impossible to control, not to mention the indignity of it all. Despite her dementia, however, Mom mostly had more patience about this than I did. But by and large, I felt my efforts were always rewarded when Mom was once again clean and comfortable. You could tell by the look on her face.

Then, as my patience continued to be tested night after night during a particularly bad week, anger and resentment made their ugly appearance. “Why me?” I’d think. “How did my brother and sister escape Mom’s seemingly endless need for 24/7 care?” My brother lives in a nearby beach town about ten miles away. My sister lives north of Seattle, 3,000 miles away. They called her every night, and Mom always enjoyed hearing their voices, but what could they really do? Besides, I can be a total take-charge person. This mostly worked to my benefit, and Mom’s, because she trusted me, and I was consistent in how I cared for her and her many needs. I was the one who called the doctor when necessary, and also the one who learned how to handle Mom’s diabetes, which gave me some terrible shocks when she’d have extreme sugar lows out of the blue. Those frightening episodes alone, when I had to give Mom an injection of high potency glucose, require an entire, separate blog post, as much as I learned about how diabetes affects someone with dementia. To put it more simply, I was not only resigned to handling everything myself, but I wanted to. I was the sibling who was single and unmarried. I was the one who, it seems, was destined for this role in the family. I also made use of the vast experience of our part-time caregivers/home health aides, whom I hired without having to go through an agency. I often thought about how fortunate Mom was that she didn’t have to live in a memory care facility. I was going to see to that, even if it took every last bit of my strength, willpower and patience. With the appalling mortality rate in nursing homes for months now with the coronavirus pandemic, I honestly don’t know how family caregivers and their loved ones cope.

At times Mom and I would be on the sofa after the last caregiver had left for the night, and then “Sundowner syndrome” would set in as her anxiety levels and confusion began to soar as the evening progressed, hence the term “sundowner.” Mom would start repeating things dozens of times. My patience would be at a breaking point. I would pray for calm and the ability to know what to do. . What I always discovered was that if I spoke to Mom in a gentle and kind tone of voice, after consciously calming and collecting myself, that would in turn calm her. So it worked both ways. I am only human, and above all I needed to practice calm then, and also now that my caregiving responsibilities have ended. Despite Mom’s severe dementia and sudden personality changes, she knew I was her son and that I loved her dearly. I told her this frequently and a smile would appear on her face, that beautiful, radiant smile that always melted my heart, and which does so today whenever I look at a picture of her. And she always has that smile in those pictures, unprompted, natural and pure.

Sometimes the only thing that could calm Mom in her agitated state was an Ativan (a benzodiazepine sedative drug). I didn’t hesitate to use that medication when I had to, even if it made her sleepier and harder to move and get ready for bed.

Patience is born of both love and endurance. I think Mom knew I was in it for the long haul and that I loved her deeply. She was able to achieve a level of contentment that I continue to marvel at today, seven months after her passing, given the awful inner suffering and confusion she lived with but which she somehow managed to deal with and overcome in her own way, despite the dementia.

In preparing this post, I thought back to a chapter in Nell Noonan’s wise book, “Not Alone: Encouragement for Caregivers.” In it she remembered some sage advice she had received from a soft-spoken man whose wife had severe dementia. In a support group session he said, “If I can stay calm and am sensitive to the tone of my voice, she responds to that. She always responds to a friendly voice speaking her name. She likes a smile and a loving pat, too . She can’t help the way she is, but I can help the way I am.”

One of the reasons I was as patient as I was is that she was my mother and I was her oldest son, getting up in years myself. I must say I was amazed at the near superhuman physical and mental strength I could summon if I had to. The fact of having made it to nearly 70, as well as the length of time I had been caring for Mom, gave me a sense of quiet satisfaction and the knowledge that together we could overcome almost any challenge or difficulty that came our way. God would do the rest.