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

  • Aug. 21, 2020, 10:22 a.m.
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  • Public

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.


Telstar August 21, 2020

My dad took care of my mother during the last 7 years of her life. We were all working and he never complained. We knew mother was having problems, but were never there for the Sundowner episodes.

I'll drive 100 miles to see him tomorrow - as I do almost every week. And yes, that puts an extra 10-11,000 miles on my car each year. It's well worth it because it gives him enjoyment.

But nothing I do for my dad will compare to what he did for my mother and what you did for your mother.

Oswego Telstar ⋅ August 21, 2020

Your dad is a remarkable man, and your parents raised a good son. Do what you can for him. That long drive each week is a sacrifice and an act of love. I’m sure it means a lot to him that you are willing to do that.

Marg August 21, 2020

“She can’t help the way she is, but I can help the way I am.” I loved this :)

mcbee August 22, 2020

My brother was the only living child in the same area as my mother. I am 400 miles away and my sister is 1600 miles. When my mother started to fail, we were able to have a daily aide with her for a long time, she seemed lovely and my mother called her "my best friend". At some point we discovered the " best friend" had been getting my mother to write her extra checks, beyond her paychecks. We did let her go because she was manipulating my mother, but it was so hard knowing how much my mother loved her. My brother and his wife decided to start her in assisted living. I went down for the weekend, toured all the choices, and we found a lovely small place where she would have her own apartment and great dining, a beautiful courtyard, etc. It was small enough where Mom wouldn't get lost in the shuffle. Unfortunately, within a very short time, she got some sort of intestinal infection and was hospitalized. In the hospital she fell and broke a hip. It was her second broken hip. And this time she was not having it. She had done rehab and worked back to a quality of life after the first one, but after this one she just wouldn't cooperate with rehab,or try to walk, and she just gave in to being bed ridden. My brother then found a good nursing home which is still never ideal. That being said, my brother was there to see her every day. He would go by during his lunch hours from work, and longer visits on weekends. If he couldn't go his wife would go. I would come visit for occasional weekends and try to help as much as possible, but my brother was the one who took this burden and carried it for several years until her death. I truly believe his daily diligence is what kept her going and also what kept the staff committed and caring. He would thank them and praise them and give them hugs and gifts, they knew they were appreciated for doing the hard parts. All this resulted in decent care for my mother. Even so, my brother has shared that he holds a grudge because most everything fell on his shoulders. I have to agree with him. At the time, my sister and I were raising children, working fulltime and living too far away to be any daily help. Because he lived close, worked close and didn't have children it just naturally fell to him. He knows we will never be able to repay him for all his time and dedication, but this is just how it worked out. My brother was the baby. He was always her favorite. Like you, he was the one who could always get my mother to smile. Even in those last darker days. I hope that knowledge will carry him over any resentment he has about the responsibilities he inherited by default. So I look at your situation and I know that your daily caretaking was even more of a gift than most of us imagine. I enjoyed following your daily struggles and rewards. I know how much being there meant for you and your mother. You are to be praised for remembering that you are human, but you figured out the magic in handling this type of loving committment. And there is magic. Not many people ever see that part.

Oswego mcbee ⋅ August 22, 2020

You and your sister did as much as you could. There are a lot constraining and determining factors as to which sibling takes on the bulk of responsibilities for caring for a parent. I took it on because I had no immediate family or attachments other than work, and part-time aides enabled me to keep on working for years after I moved in with Mom. The “magic“ that enabled me to cope with the daily stress and worry of my commitment to Mom was love, pure and simple. I couldn’t bear the thought of anything happening to her at a care facility, even if I was there every day. Fortunately, she never had to go to the hospital in the last eight years of her life.

ConnieK August 22, 2020

Your patience was just fine. No caretaker can be Superman, but we come close. It wasn't easy, but I'm glad I took care of her because I know she was not mistreated. You probably feel the same.

Oswego ConnieK ⋅ August 22, 2020

I’m just so thankful I could always be here in this house to be near her and take care of all her needs. The thought of her being anywhere else but home became inconceivable in time.

MageB August 23, 2020

Just a quick thank you. I so appreciate you. I appreciate G too. He got me out of that assisted living and nursing home just in time. Now he puts up with me.

Jinn August 26, 2020

It was a true expression of love that you cared for her the way you did. She must have been a wonderful Mom. ❤️

Oswego Jinn ⋅ August 27, 2020

She was, indeed!

Jinn Oswego ⋅ August 27, 2020

:-)

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