Category Archives: Last day

“Deathiversaries” and Post-Death Birthdays

Mom n Dad laughing

What do you call a birthday when that person is no longer on this earth?  I guess it’s still the anniversary of his birth, although we are no longer counting the years he has lived.

Dad’s birthday is April 30th.  I wrote the first draft of this piece back in February on the first anniversary of his death.  But then I set it aside to read it and revise it later.  And “later” turned into another month.  And now I’m dusting it off one more time.

It’s not easy to remember death.

There are so many wonderful, wonderful things to remember about Dad: his teasing and horsing around; his affection for his wife, kids, and especially his grandchildren; all his years of hard work supporting his family and never complaining; his love of naps; the way he always had time for his family; his dedication to the churches he attended and served; all the little vacations we took together; his love of food; his gregarious personality; his gratitude; his love of nature.  I could go on and on.  But sadly, I seem to be stuck in an endless review of his last few months.

If he had started to drastically decline and then simply continued that decline, I think I could have accepted that.  After all, death comes to each one of us, and after several years suffering the indignities of Alzheimer’s, I’m sure, at some level, he was more than ready to let go of this life.  As a matter of fact, for several months, while he was still living in his home, he would repeatedly tell us, “I’m ready to go home.  Please take me home. Please take me home.”

We had thought he was confused and couldn’t remember that this was his own home.  We tried in vain to convince him that this was the home he’d built with his own two hands when the rancher had become too small for his burgeoning family.  We pointed to all the pictures of the family on the mantle.  We said, “See?  There we all are!  This is your home.”  But it made no difference.  He was caught in a sad loop, not realizing he was in his own home.

At least that’s what we thought at the time.

It was heartbreaking for us as well as frustrating.  We had worked really hard to make sure he stayed home as long as possible.  So over and over we tried to convince him that he was home.  Only a week ago did I realize we were absolutely doing the wrong thing.

I had been a spiritual counselor for two different hospices, so I should have known better.  Unfortunately, I had never read the book Final Gifts during my time at those hospices.  If I had read it then, I would have understood that often dying people speak in metaphors.  Instead of dismissing Dad’s comments as the mark of a very confused man, instead of trying to re-orient him to this earthly consensual reality, we could have been brave enough to say, “Dad, are you talking about your heavenly home?”

I cry to think how much peace we could have given him if we had opened the door to this conversation.

When he was admitted to the nursing home in November of 2013, he had definitely declined further, but he was still walking, talking, and eating.  Then he fell and suddenly he couldn’t walk or eat on his own any more.  Suddenly he also began to exhibit very bad tremoring, shaking and sudden jerking which the doctor believed was an indication of more advanced Parkinson’s.

The jerking was heartbreaking to see because it had come on so suddenly and it completely interrupted his ability to rest.  Rest had always been very important to Dad, but even more so as his Alzheimer’s escalated.  It was as if he just needed to escape from the world for a while because it had become way too confusing for him.  For a while, he was sleeping, off and on, about fifteen hours a day.

Because of those horrible jerks, we started Dad on this medication that relaxed his body so the jerks would cease.  But unfortunately it also meant he was rather “out of it” a large portion of the day.  The nurses hated giving him that medication because just as he was coming back to himself, talking and joking around, it was time for the next dose.  We didn’t know what to do.  But it seemed he was safer and calmer, as well as more rested, so we opted to keep him on it.

Then something happened that took the matter out of our hands.  He fell into a bad fever.  He got so weak he could no longer safely eat anything.  Even drinking became hazardous.  And so they had to discontinue the med.  There was no way to safely give him anything.

And then, miracle of miracles, he got better!  His eyes were open, he was talking again!  We were so relieved.  And the Parkinson’s symptoms never came back!

By this time, we had put Dad on hospice care.  And because of the lingering effects from the fall, his prolonged fever and his lack of food, he had become very, very weak.  Once in a while they tried to walk him down the hall, an aide on each side and one behind him with the wheelchair in case he needed it.  But generally he was in a geri-chair (a kind of cushioned chair/lounge chair, like a recliner on wheels) or in bed.  And he began to get a bedsore, which often happens when people are lying down most of the time and not getting enough nutrition or circulation.

During this time I continued to agonize.  Should we take him off hospice so he could get some physical therapy?  Did he have a chance at recovering if we pushed him a bit?  Would he be able to walk again?  Should we try to take him out to breakfast? (This was one of his favorite things in the world, although it was increasingly less pleasant for the rest of us because he would become agitated when the food didn’t arrive right away or if the waitress wasn’t prompt enough bringing refills on his coffee.)

Dad kept going up and down, up and down.  I could never figure out exactly if he was dying or just going through a momentary dip in his health.  I kept on second-guessing our choices.

Then one day he came down with another fever.  This time he didn’t recover;  he was gone by the next morning.

Ironically, only two days earlier, I had called the hospice social worker so I could talk over whether or not we should take him off hospice so we could get him into physical therapy again.

I had assumed this fever would be similar to the last one – unpleasant, but temporary.  Instead it was one of several signs of his approaching death.  I wish the hospice staff or one of the nurses would have recognized the signs and given us a heads-up so we could have been around him while he was still conscious that last day.  I wish I had recognized the signs.

I had been with Dad until about 2:00 pm.  I left when he appeared to be more at ease.  I wish I had stayed.

I’m sure a lot of us do this when our loved ones pass.  We wonder what we could have done differently.  We wish we had been there more, shared our love, withheld our anger.  Fortunately, I know Dad knew how much I loved him.  And I’m also grateful we only had one episode of anger toward one another in my whole life.  I realize that this is a tremendous gift.  But I have been having trouble letting go of those last three months of his life.  I can’t seem to let myself be at peace about it all.

Perhaps writing this right now will help to shift that.

Sending you love, Dad.  Maybe we can start counting the anniversaries of when you went Home.  Congratulations on so successfully completing your life here on Earth.  And congratulations on completing your journey Home.

You are not forgotten.  We love you still.  And always will.


Dad’s Last Day

Once again, there is a part of me that would rather avoid writing about a day that is painful to remember.  But I’m beginning to learn that I need to acknowledge how I feel, even when it’s not  pleasant.  Otherwise these things get stuffed into the subconscious corners of my mind and hidden in my body’s cellular memory.  It’s healthier for me to remember, acknowledge, feel, and heal.  Also, I believe this could be helpful for others who are witnessing the decline of a loved one. There aren’t always professional people around to help guide us through these tough times.

So, two and a half months ago, my father died.

I was with him the morning before, as I was almost every day for three consecutive months.  I obviously knew him well and when I touched him that day, I had the feeling he had a fever.  I reported my concern to the nurse on duty and my intuition was validated.  This was the second time in three months I noticed him having a fever.   The nursing home staff missed it.  Both times.  I also noticed his breathing seemed compromised.  I heard some rattling in his throat.

Now, I have to confess that I have worked for two different hospices.   Thus I was quite familiar with the term “death rattle.”  It happens to many patients as they get close to the time of their death.  I knew this, and yet I was in complete denial that he was close to death.  I rationalized that rattling sound.  I thought, ‘Well, he seems to have a cold or the flu.  Some people probably make this sound when they have a cold and can’t breathe well, right?’

He’d had a bad fever before – maybe 40 days or so prior to this.  At that time, he was so weak he couldn’t eat, swallow liquids, or talk.  We thought he might die at that point, but miraculously, he came through.  After about three days he got more energy and was able to eat and talk again.  I foolishly assumed this fever would follow the same pattern.

I didn’t really think he was unconscious.  True, he was no longer verbally communicating, nor was he opening his eyes, but this, too, he had done before.  He was just resting.  That’s what I told myself.  He was tired and weak from the fever and he was resting.

He was still inputting and outputting.  He’d had food the day before.  He was still urinating and defecating.   Don’t the digestive systems of people nearing death shut down?

There were so many reasons I thought he “just had a fever.”  And although I was very worried about his comfort level, I certainly wasn’t worried about him dying.  Not right then.  (Although I confess I found myself thinking of that phrase “death rattle” over and over again that day.   I remember mentioning the rattling sound to a  nurse, but I guess I was too scared to specifically ask someone about the significance of it.)

After about four hours, Dad seemed more comfortable.  He seemed to be resting.  And so I allowed myself to go home, making sure to first tell the nurse to call me if he anything changed.   Allowing myself to go home was something I had learned over the past few months.  I had discovered that if I visited for more than  four hours or so at a time, I started to crash energetically.  So I had finally begun to be more gentle with myself.  I generally stayed for two to four hours at a time with Dad.  And then I also visited for a few hours with Mom, who lived on a different floor.

“Home” at that point was my parents’ home, although neither parent lived there any longer.  Due to financial considerations, they were both now in the nursing home.  So the family home was now empty of humans except for me.  I was back in Pennsylvania for an extended period of time  trying to support both parents as they adjusted to a new living environment.  I was also supposed to be sorting through and dealing with all the family possessions at the house so that it could be transferred to the bank.  (We’d had to get a reverse mortgage.)

Anyway, after this long and exhausting day monitoring and constantly trying to fine-tune Dad’s environment so he could be more comfortable, then spending time with Mom, and then going home to be with my two sisters for a bit, I crawled into bed at about 9:30.  As always, out of habit, I turned off my cell phone before going to bed.  There just weren’t enough emergencies in my life to warrant keeping the phone on.  I’d come to value my sleep.

I slept soundly that night until about 1 a.m. at which time I woke to go to the bathroom.  I glanced at my phone before climbing back into bed and saw that I’d received a text from my sister, Karen.  She reported that she was with Dad and that he was on oxygen and morphine.

Amazingly, I was still in denial.  I still didn’t really think he was dying!  But thank goodness, I went in.  I also checked my other phone message and discovered it was the weekend nurse reporting to me that Dad had taken a turn.  I had missed her call, too!  It was by the grace of God that any of us got those calls from the nursing home because my sister seldom looks at her phone at night either.  But uncharacteristically she was up;  she was babysitting her new grandson while her daughter and son-in-law were at a going-away party.  I will be eternally grateful for this divine timing.  If Karen hadn’t been awake, she might never have gotten that call.  If I hadn’t had to pee, I might never have seen Karen’s text.  I can’t even imagine how I’d feel if none of us had received these messages and Dad had died all alone.

So there my sister and I were, at his bedside, watching him as he lay there very still and breathing very rapidly.   We held his hand.  We whispered to one another.  We walked out into the hall to make calls to family members.  We prayed.

Finally at  about 4:00, my sister tried to catch a couple winks.  She hadn’t had any sleep at all that night.  Unfortunately or fortunately, there was no comfortable furniture for her to try to relax in and so she was still half awake when Dad’s breathing suddenly and unexpectedly slowed.  Karen, a registered nurse, became alert immediately.  We watched him for a minute or two and then she said, “I think I better go get Mom.”

Karen left the room, caught the elevator, woke Mom up, quickly talked with her, got her dressed, got her in the wheelchair, caught the elevator again, and brought Mom into Dad’s room in record time.

Like me, Mom was slow to realize how very, very close to death Dad was.  We wheeled Mom next to his bed and she held his hand.  Karen left the room to call her husband and at that time I saw Dad stop breathing.  I looked again, of course, checking to make sure it wasn’t simply a case of apnea.  No, he’d stopped breathing.  I was surprisingly calm.  Whether it was to protect Mom or because there was some relief that his long struggle was finally over, I don’t know, but when Karen came back in, I simply mouthed, ‘I think he’s gone.’

My sister wisely said to Mom, “Why don’t you give Dad a kiss?”  We both helped Mom to stand so she could lean over and give him a kiss.  And a minute later Karen told Mom that he was gone.

Dad waited for Mom.  He had timed it perfectly.  Also, amazingly, the  whole entire family, save one son-in-law, was in town.  My youngest sister and niece were visiting from Georgia, Karen’s son happened to be visiting from Alaska, my niece Sarah had just had her first baby and her husband had not yet left for basic training.  I was there, of course, visiting from Colorado, and both my brothers and my one brother’s family all lived nearby.  Except for my one disabled brother-in-law, everyone in the family “just happened” to be in town.   Dad’s wife, all five children, all six grandchildren, and two great-grandchildren.  We were all there.  We’d all be able to say goodbye.  What a blessing.

I am convinced that somehow Dad “knew” this.   I believe at some level his spirit knew the appropriate time to leave.  I believe all of this was divinely orchestrated.

Dad chose how to live and he chose when to die.

He was a model for us all.