Diary of an End of Life Journey September 28, 2026

I have said all along we are on a crazy circus ride, and the ride continues.  We will take the good days and enjoy this little rally that Mom is experiencing for as long as we can, admiring her, as usual, for the trooper that she is.  The Energizer Bunny has nothing on her, that's for sure.  Never has.  Never will.  And her attitude remains optimistic, as always, which is interesting, given that she recently said to me, "I'm in a mess, aren't I?"  There wasn't a lot I could say to that beyond, "Ya, Mom, I'm afraid you are."  Then we both laughed, because what else are you gonna do?  I can't think of anyone else in the same situation who would call it a mess, though.  What an interesting take on the situation.

I have read that the one regret most people have regarding hospice is that they didn't enter it sooner, and I understand that completely, because it changes the end of life game entirely.  When you make the difficult pivot from extending life and preventing death to extending comfort and preventing pain, somehow it seems to also extend life in ways you don't expect.  I think extending comfort makes life more worth living again, so people have more energy to fight for their life or something.

Hospice care has changed the game for us, without question.  So if anyone is on the fence about whether it is time for hospice care, I would say, with unqualified fervor, yes.  Try.  I had no idea what a difference it would make.  In retrospect, my mother probably would have qualified several months earlier, if only I had realized it, and it would have added to the quality of her days so much.  So I totally understand that sentiment.

In my opinion, the number one game changer for her has been the hospital bed.  She resisted the idea for a long time, even though I gently suggested it,  because she thought she didn't need it.  But keeping her head elevated and being able to raise her knees and feet in the way only a hospital bed can do has totally revolutionized her sleep, allowing her to breathe comfortably at night while still fully relaxed and resting her body in a way you just can't achieve, even in your favorite chair.  And sleep is magic medicine.  I have seen with my own eyes just what a good night's sleep can do for a person, and its genuine sorcery.  I wish I could sleep like that myself.  Maybe someday.

Nurses visiting twice a week, monitoring her health, assisting with questions large and small, have taken a burden off of us as caregivers, trying to understand the finer points of her condition and figure out how to manage the harder aspects of CHF.  With their help, we suddenly have knowledgable and experienced people on hand to explain and prescribe drugs to assist with breathing and other difficulties that come with the body slowly coming to its natural conclusion, and it has made a world of difference.  No longer in the dark, but able to handle middle of the night problems and reassure someone who is slightly panicked at breathing difficulties is everything.  Hospice has provided that.

Aides who come in and provide help in showering and personal care weekly take the burden off family in a weekly fight that many would rather not battle.  It is so nice to be able to hand off a difficult task Mom hates to someone else, who is professional and caring, but then leaves.  Showering is exhausting for a person who is already tired, and it is easy to put off.  But it is good for the skin and good for the mind, so having someone else to do the dirty work is good for everyone involved!

Chaplains, music therapists, massage therapists, social workers - all play a role in hospice care, and all are so appreciated and valued by both patients and their families.  They assist in so many ways, and I think it is truly a calling, not just a profession, to be a hospice carer.  I have benefited from their care as they have cared for my mom, and also for us, taking time to explain, listen, reiterate, evaluate, and work with us to keep mom as comfortable and happy as possible in this closing chapter of her life.

Together with the care my brother and I are giving her (being waited on hand and foot by her two favorite people left on earth is definitely giving her some incentive to stay here!) hospice has changed the way my mom's final chapter looks.  Instead of the chaos we were looking at a few weeks ago, we have a calm, organized routine, with managed care and steady guidance.

If I could give one piece of advice to someone considering whether it is time to call hospice, my advice is to do it sooner rather than later, if you think your loved one is at the point that healing is no longer in the picture.  They will give you peace of mind, and some very valuable tools you need to help your loved one (and yourself) get through a challenging time that will come to all of us eventually.

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.