Wednesday, September 16, 2026

Diary of an end of life journey

September 16, 2026

If you know me well, you probably know I process most of my feelings through writing.  It is a way for me, a somewhat emotionally uncomfortable person, to step outside myself and let me work through things without having to deal with the emotion of it all immediately.  So it stands to reason that, in one of the most emotional situations of my life, I would need to write and journal my feelings about my mom's end of life journey.

I have debated sharing these thoughts and feelings with the world, but in the end, I decided to do it sometimes, not because I thought it would help me, necessarily, but for the reasons I always share my blog posts - I hope that it helps someone else who might find themselves similarly situated.  In a world that feels increasingly isolated and lonely, sometimes it is nice to know that someone else out there is going through the same thing, feeling the same way at the same time, and you are not alone.  So over the coming days and weeks, I will share my thoughts on the process, and you can read or not read, whatever you choose, but I will do what I always do - put it out there and bring my authentic self to the table, as honestly as I can.

Two months ago, my life was what I considered normal.  My aging mother, 99 years old, was certainly struggling somewhat and required a lot of time and attention, but was still living on her own with daily assistance and healthy and happy in her own home.  Her congestive heart failure had not really progressed beyond the early stage, but I noticed she had suddenly lost a lot of weight.  That was the first sign that things were deteriorating.  I started bringing her meals daily, started spending a couple hours a night with her, I started paying more attention, and the check in calls and texts became many times a day, rather than just the usual five or six that it had been for years.

Then the cascade began.  Her breathing got rougher.  Her memory got sketchier.  The weird dreams got weirder, and her night time visits from dead relatives got more frequent.  Her ability to do things got more limited.  It all came to a crashing conclusion after she awoke in the middle of a television documentary and thought it was real time, and was unable to understand it wasn't.  When you can't make sense of reality, you are in trouble.  We were in trouble.

Suddenly, the strong, independent woman was gone and a version of her that I didn't recognize was left in her place, one which needed immediate and constant attention for her own health and safety, and which left us in a big conundrum.

It was a rough introduction to the limitations of just how badly elder care is lacking in this country, especially for families that are scattered around the country, as so many are.  Resources are not readily available, you have to work to get at what there is, and you have to make appointments and have time available to take them places, all while they may not yet be willing to admit they are in declining health to begin with.  It is a difficult situation for everyone, especially when you have to work, or you have small families or only one child, or possibly no child, on hand to deal with it, or a multitude of other complications that can arise.  And everything takes so much time while their health is declining by the day.

For me personally, I was unprepared.  It sounds ridiculous, I suppose, to think that you are unprepared for your 99 year old mother to suddenly be in poor health.  But she has always been so healthy, so to go from good health to bad health in what seemed (to me) an instant was just unexpected, and I was, indeed, unprepared.  I had a very difficult time wrapping my mind around the reality of it all; the immediacy of the need, moving at warp speed was just too much, and coming on top of some other huge life changes I had a hard time not just shutting down, which is my preferred response to these intense situations, so I can take a breather and get a handle on things.

So, for this first post, I guess my takeaway would be, if you feel overwhelmed by a parent's sudden serious decline, you are not alone.  The one person you are used to being your rock is suddenly the one you have to anchor, and its a tough pivot to make.  Give yourself some grace, its hard, but you will get there.  Your goal is for them to feel loved and comfortable and cared for, and you will manage, but you also need to care for yourself in the process, or you will burn yourself out, and then you will not do anyone any good.  That is why hospice is so valuable - they care for the whole family.  More about that later.

Take care.