Caregiving is a nonstop rollercoaster ride

Suddenly my life was all about diapers, wipes, laundry, and sippy cups. I slept in spurts between cries from down the hall. I ate my meals on the run. Instead of showers, I dashed deodorant on my armpits and hoped it would keep me from stinking. I could not leave the house without finding someone to sit with the one for whom I was caring. My life back in Oregon faded into distant memory.

Had I acquired a baby? No, for most of April, I was in California helping my father, who went to bed on April 2 and has not gotten up on his own feet since then. After nine days of the most intimate caregiving at home, the pain in his legs and back got so bad I called 911. Since then, my father has moved back and forth between Kaiser Hospital and a skilled nursing facility, with me, and sometimes my brother, at his side, signing papers, interacting with doctors and nurses, and keeping track of his belongings. As if we were his parents.

It has been a rollercoaster ride, with brief ups and steep downs. Shooting pains sent Dad to bed. Then he had an inflamed gallbladder. Then the doctors were watching his kidneys and liver and monitoring a cough that might turn into pneumonia. Suddenly doctors and social workers were pushing me to decide what to do if the worst happened. Resuscitate? Tube feeding? “Ask him,” I insisted, even though Dad’s mind drifted in and out.

He recovered enough to go back to the skilled nursing facility. I came home to Oregon, hoping things would calm down for a while. I wasn’t even all the way home before a nursing home employee called to say they were testing him for a virulent gastrointestinal infection. The next caller said the test was positive. At this moment, he is still in the hospital but might be discharged to the nursing home today.

My father is tough. Yesterday he turned 97 in the hospital. In the last decade, he has survived heart surgery, a broken hip, a shattered leg, and too many falls to count. Up until April 2, he was living alone in the home where we grew up, with a caregiver coming just a few hours a week. He moved around with a walker. Everything, from getting dressed to carrying a cup of coffee from the coffeepot to the table, was difficult, but he kept going. Now we don’t know what’s going to happen, or maybe we do know, but not when. I’m not going back yet, but I’m keeping my suitcase handy.

Many times I have wondered how God could thrust me into caregiving again after all I experienced with my late husband, but I also think maybe it was always his plan that instead of caring for babies I would care for the sick and dying in my family. It’s a hard job, perhaps the hardest. If I had been a mother, would I have been better prepared? At the least I would know how to feed someone without getting it all over his face, how to open the stupid plastic container of wet wipes, and how to clean his most personal parts. I could pick up a baby and carry him to the ER instead of calling 911. And yet I find I’m getting pretty good at this caregiving business. If I don’t know how to do it, I figure it out. Isn’t that what mothers do? Or so I hear.

It’s not the same, of course. With luck, a baby grows up and learns to care for himself. A baby does not have the language to complain and criticize. Nor is there so much history. This is the man from whose sperm I was created. Hour after hour, I sat with him in that same bedroom, studying the flowered wallpaper, the crucifix over his head, and my mother’s dresser with the same perfumes, pictures, and music box that were there when she died almost 17 years ago. I wanted to be the “good girl,” taking care of everything. But time and again, I failed. He was wet, hungry, in pain. The coffee was cold. Gritting my teeth, I did my best to take care of it, but there’s all this baggage. When he yelled, I was still the same scared kid I was long ago.

When Dad was in the mood, he talked about the ranch, WWII, his career as an electrician, and people who had died. He said he was not afraid of dying, that he looked forward to meeting my mother and the rest of the family in heaven. I treasured these talks, knowing how precious they were, knowing this might not happen again. We cried hard when I said goodbye last week.

So that’s where I have been. You can read more at my Unleashed in Oregon blog. I have never missed so many weeks of blog posts. I hope to get back on schedule now, but I make no promises. I may disappear again. Caregiving is 24/7, and Dad has no Internet connection, even though he lives in the heart of Silicon Valley.

Have you been in situations like this where you used your parenting energy in other ways? Please share in the comments.

God bless you all. Mother’s Day is coming. Prepare to duck and cover.

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12 thoughts on “Caregiving is a nonstop rollercoaster ride

  1. Sue, my heart goes out to you – I looked after my mother when she became suddenly incapacitated and spent months in a whirlwind of work, visiting her, running around trying to sort things out for her in the background, you can imagine I’m sure.

    Regarding motherhood compared to caregiving, it’s a totally different scenario caring for sick and elderly parents – the legalities, the assumption that you have the time to do this because you don’t have children (even though you may have a mortgage and a job and your employer doesn’t recognise you caring for your ailing parent as a responsibility – I had that to deal with too). You have more leeway with employers when you have children, most employers offer flexible hours for parents and can even adjust working hours for parents. Forget the luxury of flexible working hours if you’re a carer. I’m based in the UK by the way, so appreciate things are different in the USA.

    I hope you get a chance to relax a little now you’re back home before being thrown back into the fray with your father again… my thoughts are with you.

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    • Thank you, Bamberlamb. It’s the same in the U.S. This whole situation has been tough on my job and everything else. I got a lot of sympathy at work but lost a whole month’s pay, and if the woman who subbed for me wasn’t clear that she does not want my job, I might have lost it. And yes, being the one without children or husband to come home to, I am the one who is expected to do the caregiving. I would do it anyway because I love my father, but it does make things different.

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  2. Thank you for your beautiful article. I can fully relate to it. I also agree with the differences you mentioned between parenting and caregiving, which make the latter emotionally so hard.
    I wish you all the strength you need, please try to take good care of yourself too!

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  3. This will be my reality someday, as the only child with children.

    It’s never easy, but it has to be done, and it sounds like you’re doing your best – that’s all you can do.

    Remember self care in this time, too. Make sure you do something for you.

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  4. I missed you too. I was worried as to why you were not posting. I thought you must have been ill. I’m glad you are not, but sorry to hear about your father.

    Gut instinct tells me caring for parents and kids is not the same. Our parents are the ones that cared for us. They have been fully functional adults and are losing their own capabilities. We expect babies to be dependent on us, and they are going in the opposite direction developmentally. Perhaps parents with a child with a disability or specific lifelong condition might relate to this, where they are not developing in the normal way.

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  5. And as one expert put it, for some wives, caregiving is “a roller coaster ride from hell,” with each day bringing new challenges, demands and adjustments. What outsiders see as a gift, the wife may be experiencing as “a dirty little secret,” Diana B. Denholm wrote in The Caregiving Wife’s Handbook,” recently published by Hunter House.

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