A friend of mine sent me an update on her caregiving challenges that took my breath away, not only because of the magnitude of what she’s dealing with on a daily basis but because of the grace, beauty and wisdom contained in her final paragraph. With her permission, I am sharing her words so other caregivers can find hope and inspiration in her compassionate approach to dealing with loved ones who can no longer take care of themselves.
You may know that for seven years I’ve been caring for four elderly members of my family, in various states of illness and decline, and slowly cutting back [my workload]. Our 99-year-old died around the first of the year; a very good thing for her, as life was miserable.
My husband is now 91 and in seriously failing health, with congestive heart failure that we’ve not been able to stabilize, and advancing prostate cancer. The drs. are having a hard time finding the right balance of diuretics and beta blockers, and I’m concerned about adding two more serious drugs (that block testosterone production) for his prostate cancer. He loses abilities from week to week, and you will understand that he is number one priority for my time.
In addition, I’m caring for my very elderly parents. Alzheimer’s progresses from Stage 1 to Stage 7; Stage 7 being where the disease process shuts down the heart or lungs. My dad is in Stage 6 — totally uncomprehending, personality gone. He’s begun the hallucination phase. I did not realize that Alzheimer’s has a psychotic phase, which does pass as the disease worsens. But he’s there now, with full blown paranoia, voices, and hallucinations that are as real to him as this computer is to me. He wanders, often at the prompting of his hallucinations, and it is as likely to happen at 2 a.m. as 2 p.m. Mother frequently wakes up in the night to realize dad is gone, and calls me to come help find him.
Mother is in stage 4 cancer, her doctor has said she perhaps has two to four months. She’s surprised us once before by going into remission, but the dr. doesn’t see any sign of that now. She’s almost completely lost her appetite, isn’t able to do the shopping, cleaning, cooking, bookkeeping, dealing with medical/insurance/pharmacy stuff any more — so that is where a lot of my time is focused. I’m glad to be able to take over the daily living chores so she can focus on keeping Dad safe. No small task now that he’s begun hallucinating, and acting on his hallucinations.
it is very much like parenting in reverse. Instead of watching each one gain abilities, fluency, etc., the movie runs backwards as they lose ground from day to day. Remember the sense of joy and astonishment when your daughter rolled over the first time, took her first steps, put her first sentence together? Dad’s descent into Alzheimer’s is exactly the opposite — from week to week he loses cognitive skills, memory, even the ability to speak. This certainly isn’t what my parents expected or planned for in their last years.
Every now and then I have the sensation that I’m juggling — but juggling living, breathing, human beings, each of whom I love dearly. I cannot drop any one of them. But even with the constant stress and tasks that must be accomplished, it is a very, very rich and rewarding experience. It is calling forth depths of patience and understanding that I didn’t know I was capable of. And it is a time of healing and letting go of past hurts, and realizing what a truly amazing thing love is.
UPDATE: Nine months later, my friend sent me this update. Again, I found her words inspiring and worth sharing.
Thanks for checking in.
Dad is transitioning from Stage 5 to 6 of the Alzheimer’s progression. Unable to make a sentence of more than two or three words. Working vocabulary of maybe 12 words. Sudden rages, strings of profanity, striking at Mother and me. We understand it is the disease and not him, it is totally non-volitional. But still it is hard, harder for Mother than for me. We are becoming adept at distraction, AKA bribery with food. Which is fine, as he is still 6′ tall and weighs 114#. When two of us are caring for him, it isn’t too much of a load, but if she is alone with him for more than a day, it is too exhausting.
Mother remains in remission, but she’s wearing down. I’ve started dropping a very gentle, “Well, there is always assisted living, if you need a break or can’t do it anymore.” She isn’t resisting as strongly as before. We shall see. I have a hunch when he becomes bladder and bowel incompetent, which is the next coming milestone, then she’ll do it.
My husband’s congestive heart failure is in good control right now, with hype-rvigilance on fluid intake and outflow, and diet, and adjusting meds daily to keep things in balance. Just got a statement from the hospital that his two days in ICU cost over $22,000. Thank God for excellent military insurance, none of that will be out of pocket. But I sure wonder what happens to people who aren’t insured.
I’m doing remarkably well in all of this. Grace. Pure grace.
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