Wednesday, February 17, 2021

Update And Mood


Update:

My father is still in the hospital.  Not much to report - or nothing great, anyway.  Refuses to take his medication.  Not eating well.  Speech is "garbled", although we are not clear if that means "unintelligible" or "mixing words".  They have reduced his blood thinner as they may order a lumbar puncture (tapping of the cerebrospinal fluids - warning that the picture on Wiki-everything article is not for the faint of heart) - not confirmed as ordered, but in the doctor's notes.

Also, still restrained.  Notes comment on his strength.  At 81 years old.  

I stopped by and saw my mother as well today.  It was not such a good visit.  She is ready to leave, but as I spoke with her I realized that I think she thought I was my father.  An odd feeling, one that is slightly uncomfortable  Told her she was still working on her memory, and we would be by to see her again soon.

Thoughts:

Glen asked me a question that I had to think about a bit before responding:  How am I doing?

That is an odd question, odd both because I do not know how to fully answer it and odd because it is something my sister and I were discussing yesterday.

In a very real way, times seems to have completely collapsed.  A little over a month ago, I had taken my father to the doctor and he had passed his general physical as well as his cognitive test.  Within that period of time we have gone through three versions of "The Plan":  a) Move both of my parents into a retirement home; b)  Move my mother into a memory care facility and my father staying at The Ranch; c) Move my mother into a memory care facility and my father into assisted living.  And now, d)  Move my mother into a memory care facility and my father into a "skilled nursing facility", yet another term I am learning.

Plans b through d have all been in the last two weeks.

My future planning has narrowed to very small windows of time:  get my mother moved in, get my father moved in, get my father out of the hospital, get my father moved to whatever the next stage is.  I (and my sister, I think) are no longer planning in bigger chunks than this.

As their mail comes in, we triage everything.  At this point, we are making a few choices about what stays and goes (the satellite TV, for example, goes) while the rest of it - home insurance, auto insurance, utilities - we are maintaining as is as much as possible for n ow.  That is an issue for another day.

Am I frustrated we cannot do more?  I do not fully know how to answer that question.  We have certainly gone back and looked at the last period of time: Did we miss anything?  Should we have moved sooner?  Was there some significant health issue we missed?  Should we doing more now?

The answer keeps coming back as "No".  Four months ago my father was as he had always been.  The decline accelerated within (literally) the last two weeks; everyone involved has noted it.  And currently, given The Plague, there is little we could do that we are not doing:  We cannot go to his room and even if we did, I have no idea what we would do if we were there.  We are not medical personnel.  Maybe I could convince him to eat or take his pills - but the comment this morning was that he was not always responding even to his name.

I do not think I could do any better than a trained nurse in this matter.

Everyone has been unfailingly kind and understanding in this, from people involved in the various facilities to the various nurses and doctors we have spoken with to the pharmacists and receptionists and everyone in between.  I would hope that they are responded to with the same sort of courtesy and kindness from those that they are serving, although the more cynical side of me doubts this to be so.

The events of Great World "Out There" - the national goings on, the Arctic Disaster currently inhabiting the Midwest and South - are things  I should care about.  I have family and friends impacted by the Arctic wasteland that is the South and Southeast right now.  I actually have thoughts and opinions on such things, and occasionally the rattle around in my head as postings as I drive back and forth or as I walk the dirt roads here to make myself get out of the house.  But they all have an unreal quality to me at this moment, even as I acknowledge that eventually - whenever the "New Normal" appears (yet another reason to hate this phrase) they will impact my life.  

Literally, my world has shrunk to my parents' house, a hospital, a window at a facility, and the roads that connect them.

I worry, perhaps a little of all things, that my writing has also shrunk to this narrow band of experience and reality.  On the one hand, it feels like I should at some point be writing on different things - on the other, the reality is that I do not know how many people write on this, or at least individuals that are not professionals.   One cannot endlessly natter on about one's emotional and personal experiences when there is so much else going on to write about.

Yet every time I sit down, this is the only place my words seem to run to.

I do not find myself particularly tired or emotionally exhausted or "out of sorts" the way I have read or heard from others.  There is a strange limbo-like quality to all of this, brought on perhaps by the fact that I am displaced from my normal surroundings and habits and schedule.  I work, but it almost feels like I am simply filling the time between when I get up and the time that I quit, waiting - and dreading - for the phone to ring or a message to present itself.

In a very real way, I am a nomad living in a prairie of shifting grass mounds; I have surrendered any hope of passing through the prairie at this time, and am only concerned with getting over the next mound.

20 comments:

  1. From my lofty vantage point up here on the Thunderbox.... Your focus is right where it needs to be, TB. Hold fast; that living, shifting grassland buffets others too - and you are their anchor and their blessing. It is a time for faith, focus and thankfulness. It always is, I suppose, but sometimes more so than others.

    It’s okay to take a break too.

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    1. Thanks Glen. It is always good to have the second opinion of a friend.

      A break...It feels like I am nothing but on a break now, a very odd break where there is not much I can do but wait. At some point I need to start doing certain things here. I almost put them off, as if somehow performing them makes reality more really, finality more final.

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  2. Anonymous5:02 AM

    Your priorities are your parents and no one can fault you for that. Taking care of the people who raised you and your siblings is to be strongly commended. My condolences to your family in dealing with this responsibility - aging is not easy for both parties.

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    1. Anonymous - Thank you. Maybe it is a leftover from a society that seems practice multi-tasking as a way of life.

      It is not easy. I had known it was not easy on them; I had not anticipated its impact on myself.

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  3. I find your writing about this transition period with your parents very interesting. I spent 9 years taking care of terminally ill people in their homes, so it really strikes a nerve for me. It is so hard for the families and caregivers to see and accept the decline of their loved ones. Often the very best thing you can do is to take it a day at a time and consciously make the most of every moment you have. There is a wonderful book called "Being Mortal" by Dr. Atul Gwande that deals with end of life issues from both a personal and a medical perspective that is well worth reading. There is also a 60 minute segment on PBS Frontline that is narrated by Dr. Gwande. You can find it on YouTube.

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    1. Mary P - Thanks so much for stopping by and commenting.

      Yours is an interesting perspective. I would say that I could not have done what you have done - but six months ago I do not know I would have said I could do what we are doing now. One day at a time is hard for me - I always tend to be looking out there, on the horizon. In that sense, it has been a very humbling experience.

      Thank you for the recommendations. I am familiar with Dr. Gwande from his book on Checklists (thought I recognized the name, though I had to look it up).

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  4. To me, after some amount of time reading a blog is a lot like marriage. I continue to read it while the author goes through sickness and health. Like Glen said, I think your mind is where it should be. Someday in the future, you can go back to your great orations on a variety of subjects. I will be there now and then god willing.

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    1. Thanks Ed. To be fair, I am the same with others. Again, part of my argument of the value of the Social Internet: we actually do life together instead of "fire and forget".

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  5. You are skilled at management. And you are writing the text book as you go. Like Glen said, you are on target and on task.

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    1. Thanks you STxAR. If nothing else, I hope someone can benefit from my experiences. One way or the other, we are all destined to face this sort of thing on both sides of it.

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  6. I've read what you have written about the mental and physical decline of elderly parents.
    And I have not mentioned what is going on in our family because of both privacy and also of not wanted to be a "me too."
    Both of my wife's parents are still with us, and they are also our neighbors and have been so for more than 35 years.
    They are in their decline, both physically and mentally, and if we didn't live next to them, they no longer would be able to live in their home.
    There hasn't been a rationale discussion with them about their future, because by the time we noticed the degree of decline, their ability to have a rationale discussion had passed.
    They are adamant that they "don't need our help" but they also demand that we help them for any and everything.
    When you said, "... and am only concerned with getting over the next mound." It resonated so strongly that I had to stop and take a deep breath.
    I've likened it to a clock face that is divided only into, Yesterday, Today, and Tomorrow.
    And no matter what my wife and I do, and that includes trying for caregiver wellness time, we return to, "Yet every time I sit down, this is the only place my words seem to run to."
    I would only replace "words" with the word "thoughts".
    As STxAR said, and I will paraphrase a bit, we are all writing the manual as we go through the experience.




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    1. John:

      Wow. I had to read your comment, and read it again.

      It is a hard thing to have that discussion; I can only hope that if that time ever comes for me I will be able to have it with grace and aplomb and understanding. I hope I am also aware enough that I can have the discussion when I should, instead of when I need to.

      My parents were a bit different than yours, I think. My father was willing, near the end, to consider moving my mother to a memory care facility after he was willing to admit it should be so. It was clear that my mother no longer thought of "here" as home, which was the justification for staying. He was a little harder to convince about moving himself as well; I do not wonder (looking back) if whatever he is now suffering from had already started to take hold.

      I like (if one can use the word for such a hard concept) the concept of a clock face with Yesterday, Today, and Tomorrow. Because it is true. My life is now divided into morning updates, evening updates, and random updates during the day.

      Seldom does a writer get a higher honor than the one you have paid me in this. Thank you.

      We are all writing the manual, and I think in some sense we all have to. What I hope, perhaps, is at some point we can all write a little more together as well.

      I get the privacy thing. I truly do. But never feel like there is a "me too" aspect involved in commenting, at least on this blog. The only reason we get better or smarter is because we share (again, the power of the Social Internet).

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    2. The time to have that discussion with your loved ones is now. I read "Being Mortal" by accident when I was visiting my sister and my Kindle died. I was desperate for something to read, and this was available. Wow, life changing! I am 74 years old and in good health, but I have asked all my kids to read the book and have had that discussion with them. I have also executed a living will, advance directives and given two of my daughters my Health Care Power of Attorney. After spending 9 years taking care of terminal ill people (the most fulfilling thing I have ever done), one of the most heartbreaking things is when the family doesn't know what the patient would want.

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    3. Mary P. Absolutely true about the various Powers of Attorney.
      Among the many things we have learned is that we were woefully behind the paperwork curve for both of them and for both of us.
      We've gotten that task fairly well squared away, and we are a bit red faced that it took as long as it should have.




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    4. Mary P, fortunately my parents had executed the Powers of Attorney. That said, in speaking with my sister and brother in law there seem to be gaps even within that documentation. Fortunately, I think we have a clear understanding of what our parents would desire. I can make the call if needed.

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    5. John, let us just say I have more homework to do.

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  7. Your limbo like reality is normal. I just completed a 3+ year long odessy with my mother's dementia. She received her wings January 19th. I am still adjusting. It was a long journey for her and me. Focus on what is important right now. The rest of the 'world' out there will continue happening. Be aware, but focus on your family. This journey will only come your way once. Don't miss it.

    Fern

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    1. Fern - Thank you so much for stopping by and first of all, my condolences on your mother's passing - even as in some ways it may seem a blessing in that your mother no longer suffers.

      This is the tail end of a journey that started almost 7 years ago, and it seems that the chapter turn that I had anticipated was not at all what The Author had in mind. I am fortunate in that I have a sister who can share the burden directly and a wife that is able to manage things in what seems to be a longer and longer absence. Part of it, I suppose, is learning to appreciate different things in new ways. It has certainly given me great food for mediation and thought.

      Thanks for all you and Frank have written. I have benefitted deeply from your wisdom over the years.

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  8. Same as what Glen said. And we'll all continue to lift you all up in our thoughts and prayers. We're here if you just need to 'talk' or just sit quietly with you all.
    ~hobo

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    1. Thanks Hobo. Funny how much of a day by day process it has become. The world really has narrowed.

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Comments are welcome (and necessary, for good conversation). If you could take the time to be kind and not practice profanity, it would be appreciated. Thanks for posting!