Family Caregivers

Posted byembrace-the-suck.blogPosted inUncategorizedTags:

November, 2021

Someone in ALS Land named November Family Caregivers Month. This pushes me to blog, and post a couple of days early, about a subject I should have blogged about earlier, and that is the wonderful clutch of the family caregivers of Team Waldo. They have helped me so much in my ALS journey that I just have to tell you all about them, knowing full well that being mentioned in this blog will certainly lower their reputation in the community. At some point I’ll have to tell you about the professional caregivers that help me through my day.

First is the Commander in Chief of Team Waldo, St. Laurel. What she does for me is remarkable, all the while expertly handling an extremely demanding job. I can’t list all she does to keep me alive and eye tracking, but here’s a sample: orders the endless stream of medications and makes sure they are timely squeezed through my feeding tube after due pulverization; coordinates appointments with hospice medical providers and attends each session to insure I get the care I need; wipes my endless production of drool; orders the brown sludge that constitutes my sole source of nutrition while enduring hours of bad hold music; deals with the medical industrial complex to make sure bills are paid before credit records are damaged by incompetent billing staffs; feeds me; arranges and graciously hosts visitors; takes the wheel when I’m seeing double; and generally lives and cares way beyond her vow to love me in sickness and in health.

Then there’s the unruly siblings, the product of loving Catholic parents. Big brother J took over the family LLC and cleaned up some matters to which I should have paid more attention. He also lets St. Laurel pour his expensive wine down my feeding tube. I mean, why not? And there’s his wonderful partner D and her lovely sisters who have become part of the family whether they like it or not.

Then there’s exceedingly clever younger brother C who can build and fix anything and even has the right tool for the job. Without him the chair d’ commode would have been much more cumbersome and the front door ramp would now be in shreds. He got so sick of me hitting him up for favors that he moved to Minnesota with dear S who leaves great blog comments.

Then there’s Sister M and her family. As a nurse, she has helped guide us through the medical industrial complex and provided early assistance in palliative issues. Burly bro in law A helps transport me to appointments and shots, replaces smoke alarm batteries in high ceilings unreachable by St. Laurel, and says wildly inappropriate things that can’t be repeated in a family oriented blog.

Up from behind the Orange Curtain come sis in law L and bro in law R. They bring joy and mirth and fine wine whenever they arrive. Accompanying them is my favorite mom in law J, whose painting graces the homepage of this blog and whose garden bounty often graces our table.

When this bunch gathers, the decibels flow like a fine libation. In this season of thanks, I am grateful for the cheer and selfless aid they each bring to Team Waldo. Happy Thanksgiving!

See you next time.

17 thoughts on “Family Caregivers”

  4. Happy Thanksgiving, Bob. Your team is amazing and deserves the acknowledgment, and you deserve the best for all the good work and contributions you have made to this community and your clients over the years.

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  5. You get all this great love, care and treatment because each one knows you would do the same for them. That said, you are one lucky man, especially for having St. Laurel, who you had to beg to marry you (or was it to date you?), as I recall from a story once told. That was a very prescient move on your part. Love and happy Thanksgiving to all of you!

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  7. Hey, Bob! My thanksgivings include being inspired each time I read one of your impeccably told, witty and brave stories! My best to you and St. Laurel!

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  8. If there was ever a reminder to give deep thought, and creative juices to one’s own list of important people for whom we are eternally grateful, and attempt to articulate that, this is it. Thank you Mr. Bob, thank you very much. And we have the extra with your descriptions, we actually get another sense of your world.

    You will certainly love and enjoy that family gathering. I am off to the Dewees sibling Thanksgiving in a house that will hold us all in Tomales.

    Affectionately, Jeanne

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  11. Bob you are right of course! There’s no one like family and fortunately they all have terrific skills. I wince in pain that
    Managing the medical industrial complex is so difficult. Saint Laurel could have earned her RN license in the
    Time she spent on hold! I called to make an appointment yesterday and was referred to the website which was down getting maintenance and so it goes— just plain craziness; agreed. Ahh
    I remember when it was health CARE
    Not a business model…..I date myself!
    Looking at blessings since it’s Thanksgiving tomorrow and family is the greatest of blessings. Love Marie

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  13. You move and inspire me, Bob and Laurel. Your care for each other, and for family, friends, and community, and your aliveness in the face of challenge are the definition of love. Blessings, Kim

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  14. Awwww…. C and I really miss you guys. The shock of moving is now wearing off and we are clearly seeing what we are missing in California — FAMILY!! There’s always a trade off, right?!! Part of the big plan before ALS, was to host you here in our home once we were settled. You have always been my home away from home. Wish we were there…. Hugs! xxx S

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  15. Hey Bob
    Happy Thanksgiving to you and your familial care team. Sounds like you have a great team with varied skills to help you thru this ALS journey. This was a great tribute to that team. Enjoy this day of gratitude. 💕Pedie

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  17. Bob, thanks so much for fleshing out your support group and giving us a wonderful picture of your family.

    By the way, re wine/feeding tube: I did same with Nancy. Helped her cope a little better. I had to be careful – too much and she might have had problems. She was totally mobile but if she fell, who knows how i would have managed.

    Your friend, Michael

    >

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