TL;DR Post: When facing the reality of being the primary caregiver

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    May 11, 2014 2:49 PM GMT
    If you don't like long posts, then don't bother reading any further. You won't like this one.

    In a private message to another RJ'r, GAMRican wrote

    I am on point as the potential primary care giver in my parents' situation. My brother, although my elder, is not situationally able to be a primary care giver. I am, by my life experiences and professional experiences, the more logical option as primary caregiver. My parents' temperments are much like your parents. At this time, my mother is taking care of my father (she is the one "in charge"). We have been facing the reality of our parents' declining health and living capabilities since my father's first Type II diabetic incident in 2010. At that time, he was in the hospital for several weeks, and at one point we weren't sure he was going to make it. That series of events set into motion a series of conversations which were authentic, meaningful, and forward looking.

    Our reality which we, through conversations, have come to mutually accept is that if the natural order of life were to happen then dad would pass first, then mom, then my brother, and then me. Talking about death is not something which a lot of people do ,nor like to do, nor do well. Because of my experience living with HIV for about 30 years, I've grown accustomed to having real and unvarnished conversations about death and dying. I was and am in an informed and emotionally centered place from which to facilitate conversations on death and dying with my family. During early and later conversations we put together "if-then" scenarios. We have been able to address both the technical/logistical and emotional aspects of our most likely scenarios. Granted, we can plan all we want and all those plans may fall apart when a life event occurs, but the process of talking through and planning for inevitable futures does help to make individuals and the entire family more emotionally ready for a death which will come. And, it is for sure someone will die first.

    This trip, the coming reality of a life event is that much closer to being a present reality. Dad has had some more diabetic incidents, he has some leg wounds which are healing very slowly, he has been fatigued to the point where he nods off in our presence, he is not as socially engaged with us in our presence, and he is facing surgery to have a pacemaker implanted. He doesn't have a lot of fun stuff to look forward to on the near term horizon. Mom is tired as she attempts to take care of dad and herself. She's not in the best of health herself and she cannot physically maintain her current burdens. My brother is here for a short trip (at my urging) because the annual Christmas visit where the four of us are usually together may be too far away and may never happen as "the four of us".

    Although I'm not a health care professional, mental health professional, home health care professional, or other family services professional, I do have some real world experiences from which I have learned and am continuing to learn. My first suggestion is to find yourself a good mental health professional. A psychotherapist who is familiar with death, dying, grief, and family communications type experiences would probably be the most valuable guide.

    Second, start doing your homework. Seek out other professionals in elder care, hospice care, and other related professionals in order to make yourself aware of what you may be facing as a primary caregiver to your family. Read. Start learning about end-of-life issues now so that you can become aware of the issues and start working through your own emotional grieving processes now...while everybody is still alive and as cognizant as possible. If you're going to be the one who is "on-point" then you have be have your own mental/emotional "house in order" before you will be able to provide rational, calm support to others in your family.

    I had a conversation with a good friend of mine who's father passed away about 18 months ago. He told me that no matter how much you may prepare, be prepared for the unexpected to happen. People will react and respond in different was depending upon what emotions are tapped and triggered at any particular moment in time. Losing a parent is an event for which nothing can completely prepare a person who is the child.

    That's what I've got to share at this point in my own life situation and process. In the end, you have to do your own gut check to determine if you're the one who has what it takes to be "on-point". And, whether there is another more capable person or if you're the only one you have to come to a personal and family decision on whether you're going to defer to another more capable and willing family member or if you're going to have to suck it up and be the "on-point" person whether you like it or not.

    It's not an enviable situation to be in. I know. I'm in that situation.

    I hope that you, your mother, and your family may have a meaningful and memorable Mother's Day.

    Aloha and Be Well!

    If you've gotten this far in the read, thank you!

    Considering the suggestions which I shared with a fellow RJ'r, do any of you have first hand experience from which you can share suggestions with me on how I can better prepare to be the primary caregiver to my parents?
  • AMoonHawk

    Posts: 11421

    May 11, 2014 3:17 PM GMT
    I'm not thinking about it until the time comes. Mine is pretty healthy, both mentally and physically at mid 80's. Who knows, I could croak first, so why plan for what you do not know.
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    May 11, 2014 3:20 PM GMT
    AMoonHawk saidI'm not thinking about it until the time comes. Mine is pretty healthy, both mentally and physically at mid 80's. Who knows, I could croak first, so why plan for what you do not know.

    I hope that you and your family get to continue enjoying long life with great health. I was told that I was going to croak first 30 years ago from HIV. Plans may not be valuable, but "planning" is invaluable. Thanks for the input.

    Are there any other RJ'rs out there who may have some suggestions for me?
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    May 12, 2014 4:37 AM GMT
    Diane Keaton in one of those quick interviews in a mag I just received...

    Q: How would you like to die?

    A: Like? I have no soft spot, fondness, admiration, respect, attraction, or esteem for death...

    Odd for me to complain about thinking too much but prearranging the order of deaths could signify overthinking. We've a sense that one generation predeceases progeny but even that fucks up and certainly within each generation the rule has never been first come first severed.

    Caregiving is so stressful that with Alzheimer's which you didn't mention but probably with lots of stuff, the caregiver--particularly when of that elder generation--often dies first. I've seen that with friends twice.

    You won't be flipping a coin to pick the primary caregiver. It will be whoever naturally comes to the task and then hopefully the other sibling will kick in as much as they can to offer relief. That could mean financial help or running errands or filling in for a week or two at a time to offer the primary caregiver respite, etc.

    In most situations that I've known of, with rare exception including mine, the responsibility mostly fell to my friends with their siblings doing very little. I've one friend it almost destroyed. So damaged. I was one of the lucky ones. I took on most, as mom and I were such good friends but when my brother became involved he did an excellent job with our mom and with me. And my sister in law could not have been more supportive. Metta8 and his sister sound like they're doing an excellent job together. But I've rarely heard similar such stories told.

    What's my advice to prepare for this adventure? Fly by the seat of your pants, utilizing, as you're outlining, all the resources of society. It's so complicated living someone else's life for them that you can't think of everything beforehand. You'll make some mistakes, but you're a good guy and you'll do right by your parents. The instruction book for life is in living it.