Juggling Living, Breathing Human Beings

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.





Click here to see all my posts related to Alzheimer’s.






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16 Responses to “Juggling Living, Breathing Human Beings”

  1. Serena Says:

    I truly admire your friend. She and her loved ones are in my prayers.

  2. Phil Bolsta Says:

    Many thanks, Serena.

  3. Jackie Rose Says:

    Wow. Can I lend a hand? Reading this I would love to help in any way. Please, if you feel comfortable, pass along my contact info. We most all remember to breathe. Come up for air, take a quiet moment and breathe.

  4. Phil Bolsta Says:

    Very kind of you, Jackie Rose. If you were living in the same state, that would probably be appreciated.

  5. Patty Says:

    Thank you for this posting on caring for the elderly. My family has been going through this experience with my own mother for some time. The experience within a large family can bring about a full range of emotions with each individual family member trying to cope with the grief.

  6. Phil Bolsta Says:

    Yes, every person grieves differently and caring for cherished family members is one of the most difficult and challenging tasks we face. Best of luck to you, Patty.

  7. sajerosa Says:

    I appreciate and admire your friend for her compassion and dedication to her family. She chose not to send them to nursing home instead took care of them all. Kudos to her. May God continue to bless her with strength.

  8. Phil Bolsta Says:

    I’m sure she appreciates your kind words and good wishes, sajerosa.

  9. Ellen Besso Says:

    Yes indeed, this is a very powerful story. I too have experienced the depth of growing love and spiritual connection with my mother (who has Alzheimers) over the past 12 years; this has increased exponentially as her ability to speak decreased. Your friend is a very special person Phil.

    Ellen Besso
    MidLife Coach, Author, Caregiver
    “Surviving Eldercare: Where Their Needs End & Yours Begin”

  10. Phil Bolsta Says:

    I’m glad to hear that, Ellen. I wish all people facing such difficult situations adopted your approach.

  11. vic Says:

    Hi Phil,
    Thanks for posting this article, I was crying while reading it. It makes my problems seem trivial compared to these caregivers in the article! Keep doing and loving and giving inspiration.

  12. Phil Bolsta Says:

    I’m glad the post touched you, Vic. Yes, we all need to have a perspective check now and then.

  13. Judy Dunn Says:

    Phil,

    Thanks for directing me to this post via Twitter. I have the deepest respect for the children and spouses who step up to the plate and provide loving care.

    As a (grown) child with a father in final stages of cancer, I do feel guilt because I do not live close to my dad. (Two hours away). My brother (5 minutes away) does and he is the one my dad calls when he needs help. I thank God every day for my brother.

    Thanks for sharing this heartbreaking but inspiring story.

  14. Phil Bolsta Says:

    My pleasure Judy. My friend’s love and devotion to her husband and parents is nothing short of breathtaking. She is still spending 70 hours a week managing their care.

    Thank God indeed for your brother. My sister moved back home to Minnesota from Oregon to care for our dad and she now lives with my mom, who is in great health. We should all be so fortunate to have someone care for us so deeply and so well in our darkest hour.

  15. Debra Schumacher Says:

    Your friend is indeed a wonderfully caring individual. What struck me the most, however, was the status of those she cared for between the 2 updates. I had to go back and check that the 2nd message was truly 9 months later. Her mom is in remission, again; her dad’s Alzheimer has not progressed to the next stage; and her husband’s health has stabilized. Miraculous! The power of love is amazing.

  16. Phil Bolsta Says:

    Yes, Debra, I don’t think she expected the three of them to be doing as well as they are at this point. I have no doubt that her caregiving has played a major role in their longevity and quality of life.

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