Diary of an End of Life Journey October 3, 2026

The loss of one's mother, at any age, is immense.  The last couple of days have been busy as we worked through arrangements for her funeral, talked to the florist, the funeral director, started going through belongings and discussing other details, and trying to get her affairs in order, some of which have gotten in disarray in the past month as we just got through the days caring for her.  There are so many details to deal with - it is overwhelming, especially when you are still exhausted emotionally from the past month's roller coaster ride.  But it also allows you to put aside some of the heavier emotions while you deal with it all, which is probably good, at least temporarily.

However, this morning I have been thinking about my mother's hands, and how many times I have held her hand in my life.  As a child, she would hold my hand tightly so I couldn't dart into the street or run in front of someone and get in their way.  On walks, she would lightly hold my hand to steady me so I wouldn't fall if I tripped over a tree root or uneven ground.  (I've always been a klutz.)  She was quick to grab my hand over the years, and I am used to the touch of mom's hand on mine.

Over the past few years, she grew more concerned about falling as we walked places outside, especially after a bad fall she took because of an uneven sidewalk.  Each time we went somewhere, I carried her purse and held her hand, and we went there together, the two of us.  I thought about how years ago, she didn't need a cane, just my arm to walk to the car.  Then she decided she better have the cane, too.  Eventually, I took her arm, because we thought it would be safer, in case she stumbled.  And in the end, I would take her arm and we would hold hands as we walked, because it helped her steady herself, and I think she just liked the silent reassurance that I was there.

She remarked a few weeks ago that I was now caring for her just like she cared for me when I was little, and it was true, even to tucking her in at night.  I knew just how she wanted her pillow tucked around her neck, and her shoulders covered.  There is comfort in having been able to do that for her, in having been able to provide the care for her that she needed in her final days, just like she cared for me when I needed it as a child.  I think that is something my brother and I can take forward with us - we each gave back to her what she gave to us, and the circle of love was, in some ways, unbroken.

Death may end a life, but the journey is not over, certainly not for awhile, and I have a feeling this one never will be.  My mother lives on inside my head and my heart, and I still feel my mother's hand in mine.  I hope I never forget it.  It is the feeling of love, the pure, unadulterated, unearned, unconditional love you can only get from your mother.

Diary of an End of Life Journey. October 1, 2026

 Life moves too quickly, even when it lasts for almost 100 years.  And my mom's life moved too quickly, especially at the end.  One minute she was fine, living her life as always, and the next, she was not.  And suddenly, she is gone, and I am just supposed to go on without her, like an earthquake didn't just tear my entire life apart.

I am not sure how I move forward from this point, honestly.  I have already thought a dozen times, I need to call mom... I need to text mom... and then had to realize I no longer have that option.  My heart is shattered.  There is no other word.

But every other person who has lost a mother has managed to pick themselves up and move on, including my own mother, whose example I have followed my entire life.  So I guess I will have to do the same.

She lived her life with joy and optimism, fully sure of her faith and her salvation, which gave her freedom to live her life well and fully.  She loved with fierce devotion, espcially her children.  She served with strong dedication, wherever she was serving.  She worked hard at whatever she was doing.  She carried her life long friendships with her.  She was a role model for everyone of courage and strength and honor and the power of love.  And above all, she showed the power of faith as she surmounted every obstacle life threw in her path with dignity and grace.  She didn't talk about her faith, she lived it, each and every day.

I am a fortunate woman to have such a mother, who prayed over me for all of my days until now.  Rest in peace, sweet mama.  Until we meet again.

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.