We are pleased to share this blog with you. It first appeared on Cynthia’s WordPress site in April 2015.

 

by Cynthia Greb

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.

 

This entry was posted on Thursday, July 16th, 2015 at 2:36 pm and is filed under Alzheimer's Disease, Emotional Support, Grief, Hospice, Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.