Diary of an End of Life Journey. September 24, 2026

I grew up on a family farm that has housed several generations of family.  My mother, just shy of 100 years old, was born in this house, and has always been determined she will die here, and as usual, she is quietly but determinedly getting her way on this, as most things.  So as my brother and I care for her, we find ourselves looking around at everything in this house, and realizing just how much of our own stuff remains, the detritus of childhood that never had to be dealt with, because, well, why?  Mom is always there, she didn't care if our rooms remained the same, and while we cleaned out the bulk of it, a few things hanging on the wall, or laying in a drawer or on a closet shelf didn't seem to be that big of a deal.

A few nights ago I started looking at those "few things" and realized just how many things a few things added up to, and just how much work was going to be involved in just getting rid of my own belongings in this house, sentimental items I don't really want in my house, but didn't really want to part with, either.  So Mom's house was a good parking place for them.  Oh dear.

I have stacks of little tiny photos from grade school of my friends that we exchanged with each other.  We were so young and innocent then.  The world was full of possibilities back then, and we had no idea how hard adulting would be.  Sometimes I would like to go back to that time.  I slept a lot better at night back then.  My biggest fear was the dark.  And that wasn't even real.

I have the doll my aunt and uncle brought back from their trip to Japan for me.  She is a pretty little doll, and sat on my dresser for many years, a reminder that they loved me and thought of me, even when they were on the other side of the world.  They are gone now, but this visible reminder of them is hard for me to part with, even though I rarely look at it.  But I know its there, and somehow, that knowledge brings me comfort.

I have a little Shriner's cap that I got at the circus when I was a kid.  I have no idea why they were giving out these caps, but I have had it for years, and every time I see it high on my shelf, I smile, because it reminds me of fun times and childhood pleasures.  Do I need a Shriner's cap?  No.  But its been nice to have it there and get a glimpse of it every now and then all these years.

I have a little set of figurines that a friend made for me when we were teens.  She is an artist, and they are really special because they are genuinely beautiful, not the little craft that you say is pretty because your friend made them.  They have sat on a corner shelf in my bedroom for 50 years, a reminder of our enduring friendship through thick and thin.  How do I simply discard something so meaningful?  But how much can I keep from a whole lifetime of sentimental keepsakes?

Everywhere I look in this house I see things that have to be gone through, decided on, that will require emotions to be put aside and hard decisions made.  I have heard friends talk about how difficult it is, how frustrating it is, how overwhelming it is, and how they wish their parents had done things differently.  But as I look around, I suddenly understand why my mom hasn't done that.  She loves her comfortable familiar home, with everything in its spot, and the sentimental spaces all filled with things that have always been there, reminding her of the happy, busy life she has led.  She takes a sentimental journey whenever she looks at her things, and it brings her joy and peace and comfort.

A lot of things are changing really fast, but this house remains lost in time for now.  There is some comfort in that for me.  It will change soon enough, but for today, I will continue to enjoy the sentimental journey.

Diary of an End of Life Journey September 23, 2026

I've had a lot of complicated feelings over the past year or so, and I didn't quite know how to put a name to them.  I've watched as my mom slowly changed in physical ability, personality and mental acuity, and it saddened me, losing little pieces of who she is, yet she is still entirely here and present.  It felt wrong, almost, and I felt sort of guilty, but couldn't put my finger on why.

Most of the time, she was almost the same.  She still craved my time and attention, even making up reasons I had to run out to the farm in order to spend time with her.  (She could have just asked me to come, I would have gladly done it, but I guess that felt too vulnerable or something.  Ms. Independent.). She would text and call me many times a day, and if I went more than a few hours, she would be upset at not hearing from me, worrying something was wrong.  Then she would forget we had talked just a couple of hours earlier, and upon being reminded, be annoyed with me for reminding her!  She wanted to know about my day, what I was doing, and always wanted to help me with my work, or at home, or whatever I was doing.  And she was still always there, ready to listen to whatever I wanted to talk about.

But her filter had changed.  A lot.

And it changed her - who she is, who she was with me, and who we were together as mother and daughter.  I wouldn't know from day to day who she would be - the mom I have always known, or this new, slightly cutting, more irritable person that was not quite happy with me, no matter what I did.  And as her primary care person, I was often in the position of having to insist on things she didn't want to do, so there were plenty of opportunities for her to be annoyed with me. 

I don't think anyone else really noticed the changes, although I may be wrong about that.  But her temper was much sharper with me, and she was more willing to use it.  Her words were less filtered with me, and she was less concerned about their impact.  Her interpretation of events was sometimes wildly skewed from the reality of the situation, which I found confusing and sometimes hurtful.  I would remind myself that she was aging, often in pain, especially her knee, she was slowing down and everything was harder for her which was frustrating, and not to take all this so personally, but it felt personal, because of course, ultimately, it is.

I just came across a term that really resonated, and I finally can put a name on the feelings I have had.  I wish I had known it awhile ago, because it would have helped me come to grips with some of the emotions, so I'm sharing it here, in case other people are going through the same thing.  It is called anticipatory grief.  I have always thought of that as something you go through in the time immediately before a death; hours, or maybe a few days.  I didn't realize it could start much sooner; that it began when you started to notice changes that profoundly change the person you love and the relationship you have always had with them, and which, even unconsciously, trigger the knowledge that death is coming, even if its a ways off.

Over the past year or so, as my mom reached the advanced age of 99, I obviously understood that death was inevitable and unavoidable.  People just don't survive much past 100, and while I expected her to reach 100, I realized intellectually that her health probably would take a turn at some point and we would have to face life without her.  But it was an intellectual exercise, not a reality for me at that point.  Or so I thought.  But deep inside me, I now realize I have been anticipating and preparing myself for what was inevitably coming, the loss of my mother, one of the foundational people of my life.

Today, I am watching her life in the closing chapter, knowing that she might not make 100 after all, and the anticipatory grief is different yet again.  It is more present, more at the surface, and comes more readily as I realize we are doing this or that for likely the last time, or her health takes us for a roller coaster ride, and we don't know where we are heading next.  But I'm not sure it is more raw, its just different.  The realization surprises me, how raw the emotions have been, and I've been stuffing them, as I always do.  Perhaps its a survival technique.  It hasn't made it less painful.

Anyway, here is what I'm learning through all of this.  If you are dealing with an elder (or someone with a terminal illness) and you feel things shifting, give yourself and them some grace.  You aren't imagining things.  They probably are changing, and you are, too.  Its inevitable.  Anticipatory grief is painful, and the wound cuts deep.  No one likes change, especially to our most core relationships.  Just lead with love, and find a couple of safe people who have been there and truly understand to vent to when you need it, and you will have the tools you need to manage.  The feelings are real.  And there are so many of them.  You get to have them.  (Your loved one gets to have them, too, BTW.)  You aren't wrong to feel what you feel.  (They aren't wrong to feel what they feel, either.)  Overwhelming love.  Sadness.  Joy.  Memories.  Old hurts.  New realizations.  Happiness.  Laughter.  Fun moments.  Tears.  Sudden grief.  Momentary irritation.  Gratitude.  Impatience.  Tenderness.  Guilt.  Yearning.  Wishes.  You can hold all the feels at the same time, and they are ALL valid.  Every single one of them.

That's what I'm telling myself, anyway.  I'll let you know somewhere down the road if I'm right.

Diary of an End of Life Journey Sept 21, 2026

I have been contemplating what it will feel like to want to tell my mother something, and she will not be there any more.  For over 60 years, I have had her there, listening, hearing me out, at the other end of a text or a phone call or on the other side of the table or  in her chair.  

Let's be honest for a moment.  One's mother can be annoying at times.  Its her job.  She doesn't always meet the mark you set for her.  Sometimes she thinks you are wrong, and she is the one person who doesn't hesitate to tell you so.  Its annoying to be told when you are 60!

But for the entirety of my life, my mom has been my sounding board, my go to person, the one who knows it all.  I have picked up the phone almost every day and talked to her, through some of the worst times, and she has been there, and picked up the phone in the best times, and she has been there.  I have worried over her more than anyone knows, especially in the last years, and I have put thousands of miles on my car in four mile bursts running out to fix the remote and the cell phone and sort out this or that when she was confused or just needed some company.  We have gone places, and done things most 90 year olds don't do, and every single one was a joy and a delight and a gift I will treasure for the rest of my life.

She went camping in Pipestone at 98 with us.  She went to see the Twins play last summer.  She went to a concert to see her nephew conduct.  She traveled to Alaska just a few years ago.  She has gone out to eat weekly.  She has spent time at my house, eaten many a meal with me, sat in the sun on my patio, and recuperated in my guest room.

I am lucky to have more memories than a lot of people do, perhaps.  But I don't think there can ever be enough.  Recently, my mother told me, quietly weeping, that she missed her own mother, who died when she was only 23.  I think of all she missed out on, and I know how lucky I am to have had so much more.

One thing this time is giving me is the opportunity to appreciate and reflect on everything while I still have the time to let her know how much I love and appreciate her.  I feel like I am in the storm of my life, but perhaps this is the glimmer of a rainbow in the midst.

Diary of an end of life journey Sept 19, 2026

 September 19, 2026

Watching someone you love as much as life itself slowly lose their life is a painful process.  It is like seeing pieces of the person you love slowly peel away and drift off, like bark peeling off a branch in the water.  The person is there, present, real, substantially the same, but somehow the essence of who they are is slowly being lost.

Of course, the process started a long time ago.  The vital, active woman who was my bestie hasn't been the same for some years.  She has slowly diminished in capacity and ability over a period of years in ways both small and medium.  She moves more slowly, thinks more slowly, has more trouble with things like her remote control on her television (phone calls to come out and fix that at least three or four times a week!) and her cell phone (another three to four times a week visit,) decision making became more challenging, and even just moving around and getting things done was harder than it used to be.  But my essential mom was still there, I could still talk to her, vent to her, soak up her love and attention when I needed it, and count on her to be the mom she has always been.  It just took longer.

But now, for the first time, my mom forgot my birthday.  I don't really care about my birthday.  I am old enough that it doesn't matter all that much to me and is pretty much just another day in the life.  And, of course, its not really about the birthday, anyway.  But she has always made it special. by starting the day with a birthday wish and song, and this is the first time that I had to remind her.  And that hit harder than I expected, even though I knew it was coming.

It was one more reminder of what I am losing as I slowly lose her.  The person who truly puts me first.  Who thinks of me when she wakes up, and when she goes to bed, and a lot of hours in between.  Who wishes she could help me when I'm underwater on something.  Who still, even a few days ago, said she wished she could help me in my work because I am behind, and she doesn't want me to struggle.  Still trying to ease my path.  Just wanting to spend time with me.  Who has spent more time with me than anyone over the last years, and somehow, never got tired of me, and still wished she could see me more.

When you are young, life stretches out endlessly before you, and it seems like you have forever with the people you love.  You take for granted they will be there, until they aren't.  Because I lost my dad so young, I haven't really had the luxury of taking her fully for granted.  I know how quickly life can turn on you.  But I have been awfully comfortable that she was strong and healthy and still had a lot of years left.  As those days dwindle, I count them as more precious than ever, cherishing the time with her, thankful that of all the people who might have been chosen to be my mom, she was the one that was chosen for me.  I am indeed a fortunate daughter, and so proud to call her my mom.

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.