A few weeks ago, Hospice called to let us know Dad was entering into his last stages. He had been winding down for a long time and often the end stages of the death process can last weeks. We kept visiting, but did not see a precipitous decline the way my own mother had died. After some consideration, I decided to take a quick trip to Muskegon while Mike visited Dad. His first visit found Dad sleeping so he came back in the evening. Dad was still sleeping so Mike stayed with him about an hour just talking to him. He decided to go and come back the next day. Half an hour later, when the aides checked up on Dad, he was gone.
Mike felt he should have stayed longer. I felt I shouldn’t have gone to Muskegon. But the truth is, we took good care of Dad, loved him well, and a few days short of his 98th birthday he was ready to go.
The following day found us taking care of business. Contacting the funeral director, calling friends and family, arranging with my sister-in-law to come and stay with us, contacting the church to arrange the funeral, and by the end of the day we were spent and sad.
I was staring out of my office window when I noticed a butterfly in the back yard. Frequently, there are monarchs or cabbage whites in our yard but this one was unusual. It was an Eastern Tiger Swallowtail. Usually butterflies will flit from plant to plant and then leave. Photographing them has always proved challenging. This one stayed in the yard for over twenty minutes. It was if she were posing for the camera. I called Mike to see it and we watched for several minutes. I decided to get my camera and take some photos. I opened the window, hung out the side of the house and took about fifty shots.
There is a tradition among some that believe that the happy dead in the form of beautiful butterflies will visit their relatives to reassure them. A sign for those who are grieving. It is a comforting thought that Dad stopped by to say goodbye. There are those who would criticize me for being superstitious at this point. I prefer to look at it as a gentle kiss from God assuring us that all is well. After all, God is an artist and a poet.
Eldercare frequently throws you a curve ball. Just when you think you are in your groove, things change. That’s what happened to us this Thanksgiving.
Our plan was to spend the mid-afternoon with Dad and have lunch with him. He no longer knows the days, dates, or holidays. We do these things more for ourselves than for Dad, really. We visit almost daily and that’s what is most satisfying for him. But we still want to give him a sense of festivity so we try to make holidays special.
However, Dad woke up very confused. He was convinced it was WWII and that he had eaten something bad and was confined to bed and wasn’t supposed to eat. There are still times when he’ll have a kernel of truth, but embellish a story to make sense to his confused mind. So I went in search of the shift nurse to see if he’d had some sort of reaction to food lately. No, she said. He was just very confused. I went back to the room and tried a different tactic. In the past, I’ve been able to get him out of bed and dressed. And slowly get him out of his room to either have something to eat or go for a short walk.
But not this day. He was not going to get out of that bed. No way, no how, no time, no place. No. So I read a card his daughter had sent him, showed it to him and then after a very short visit, we left. The next day he did get out of bed, but still refused to eat. It may be that we’ve entered into a new part of this journey. Earlier this year, Hospice got involved with Dad’s care, but then he improved to a point where they signed off. We will be monitoring the situation and may be getting them back into the care team.
So this Thanksgiving, we are grateful for many things that include a great care team for Dad, for a lovely, safe place close by, and for the work and ministry of Hospice. Peace be with you.
There was a note on the kitchen table.
Fix Dad’s glasses.
“Did his glasses fall apart again?” I asked Mike.
“What happened this time.”
“I don’t know. The lens fell out.” I looked at the glasses.
“You mean both lenses fell out,” I said. Mike came over to look.
“What?? I just had the technician put on bolts to the screws to keep them in longer!”
“I think Dad may have undone them, although where he got a screwdriver to do it, I have no idea.”
“No, he just keeps stepping on them. There’s no way he could see and concentrate to do that.”
And so Mike took Dad’s glasses in for another repair. We talked about maybe not bothering with his glasses anymore since he can’t read and doesn’t watch TV (the remote is too complicated for a dementia patient). But he does need them to be able to see his plate when he’s eating a meal.
That lasted for about a month. Dad breaking them, Mike taking them in to be fixed. And just as suddenly as it started, it stopped. Then some other behavior changed that we had to problem solve.
And so it goes with caregiving for a dementia patient. You barely have time to get your bearings, when the problems change and you need a new strategy.
Never a dull moment.
Donna Kemper put aside her art career to care for a mother she hadn't seen in over a decade. For seven years she followed her mother's journey into dementia, caring for her and putting forgiveness into action.