My friend Dave recently moved into a care home. He and his partner decided it was best for both his care and her well-being. At the time, I didn’t know how to think about that. Is it something we could talk about? Or is this one of those topics that is too sensitive to raise? Can I initiate the conversation, or do I wait for him to bring it up? Then my mom died, and I wanted to share this with my good friend Dave. But will talking about Mom’s death be difficult for him?
When I thought about Dave, I struggled. Sometimes I felt selfish in wanting to share my own struggles. Sometimes I wanted to be compassionate and supportive for him and his challenges. I frequently found my mind in disarray as I considered what to say to my good friend. Often, I did not call, and I felt badly for not calling.
Struggling with these questions was difficult but also instructive, and I hope sharing this process will benefit others. This article is the result of the conversations that I have been having with Dave and with myself. I was moved by Dave’s courage to face and accept his condition. As a result of our conversations and with the strength I received from my own support network, I felt closer to him and more at ease about my mother’s death. Perhaps, I will become more at ease about my own.
As a facilitator of Death Cafes in my local community, I was alert to various issues around death, and I was not prohibitively uncomfortable with discussions about dying. Additionally, Alzheimer’s has been an issue in my family, so I was sensitive to the kinds of struggles that families have around this illness.
The dialogs presented here are not transcripts. I did not tape our conversations because I did not have the foresight to recognize that they would be so significant for me. I did, however, take notes. Something inside me said that I was learning something important, and the teacher in me wanted to be able to share what I was learning. I knew his words were wise, but, at the time, I needed them just for us, Dave and me.
The Beginning
We met four years ago on an Alaskan cruise, and unexpectedly Dave and I connected. From the beginning, we were able to talk about serious matters as well as joke around with each other in the same conversation. It was an instant connection of friendship. Our homes were 2000 miles apart, so our friendship was maintained electronically, phone and Zoom, except for two visits, one at each other’s homes.
In the most recent visit, we had the following dialog. I repeat, this is not a transcript of the dialog, but a recollection or re-creation as I remembered it. The sentiment in the dialog is accurate, however, because I chose to write it within a couple days of the event. I was so moved by his courage and attitude that I decided to commit it to paper with no intent at the time of what I was going to do with it.
November
Dave had previously mentioned that he was dealing with Alzheimer’s, so this conversation came as a reference to our previous talk.
W: How are you feeling about having Alzheimer’s?
D: Well, it’s kinda what I’m dealing with right now. I mean I am planning to beat this thing, so I’m
taking some actions through this study I’m in and also to deal with ….. that other thing.
W: Diabetes?
D: Yeah, that’s it. For some reason I cannot hold onto that word, Diabetes. Diabetes. Diabetes.
Anyways, I have already seen improvements since making changes in my diet, and there is this
fellow out of UCLA who believes Alzheimer’s is not a result of …. Whatever that is that is going
on with our brain cells. He thinks it is a matter of nutrition and taking care of our bodies. He thinks
the symptoms of Alzheimer’s can be reversed. I haven’t read his book yet, but M [Dave’s partner]
is half way through it.
W: What have you noticed that changed?
D: Well, a couple months ago I was forgetting things that I should have remembered. Now, that
doesn’t seem to be happening as much. I think working on my diet because of … What was that
other thing. I am always forgetting it.
W: How would you describe it? Sometimes rather than just trying to remember a particular word you
can make some other connection to the word or the idea. Go at it from the side. I use this technique
with my students. If they can describe what they mean without the word then the word sometimes
comes to mind. Or, perhaps they do not need to remember the word at all, just the description.
D: Oh yeah, someone else can provide the word.
W: Yeah. You could describe it as that sugar problem and even refer to it with a different name.
D: Oh, then the person I’m talking to would ask me whether I mean Dia… diabolical…
W: You mean Diabetes.
D: Yeah. So, you can provide the word from my description and I do not look so dumb.
W: Tell me more about how you are feeling about having Alzheimer’s.
D: Well because of this study I am hoping that I will get on the right side of the medication trial and
get treatment.
W: Rather than receiving the placebo?
D: Yeah, but if I do get the placebo, then I will have helped them figure out how this thing could
improve. So, if I end up on one side of the study then I get the treatment. If I end up on the other
side then I am helping others. I can’t lose in that, now can I?
W: I don’t know if you are aware, but your attitude is itself helpful. Learning to be accepting of your
situation will have the benefit of reducing your stress, which cannot do anything but be helpful.
How do you keep that attitude?
After this conversation, I confirmed with Dave’s partner that the information he provided was mostly accurate. He was involved in a research project, and dietary issues were a key element of the project. Dave was optimistic about the results of the different treatments he was undergoing.
Over the next couple of months, we had conversation about holidays and family visits. There was a lot of small talk along with updates on the progress or lack of progress in his treatment. It became clear that Dave was not doing well. He had to give up driving, and he and his partner made the decision for him to move to an assisted living facility. His partner had explained that she was concerned that something would happen that she could not manage.
Dave explained it with such loving care for her. He realized that his issues were not the only ones to be considered. For her protection (his word) Dave needed to move out of the home they shared. It was clear that he needed assistance that she could not provide. Additionally, they realized that she too had needs to be considered. She had her own life and activities that were important for her well-being. Dave said he had to be alert to her situation as well as his.
During this time, Dave’s partner told us of complications with medications and other issues. They felt good about Dave’s new home at which Dave was receiving very good care. Dave described it with a light heart and as a necessary process. He chuckled about having more space for his things than he was used to, and “the food, oh my, the food is wonderful.”
February
At the end of January, my mother died, and I called Dave as a friend to get support for my own situation. Somehow, no matter his current condition, I knew he would be there for me.
W: Dave, I called because I wanted to tell you at my mother died, and I just felt a need let you know.
D: Oh Wade. How are you doing?
W: I’m OK. Every day is a little better. This is just part of what happens. We all travel this road.
D: Yeah, I suppose we all do. That certainly is the road that I’m on now.
W: How are you doing with that?
D: Well it’s just what I’m dealing with isn’t it?
W: I admire you for your courage and honesty. You are not ignoring reality, but facing it for what it is.
That inspires me.
D: Well, thank you. It means a lot that you see it that way. I’m writing a letter to my boys about this
because this disease is something that gets passed on from father to son. That’s how I got it. My
dad had it but never really faced it. My brother, too, but he is just having a good time and not
talking about it.
W: We each face things in our own ways, I suppose he is doing what he can do.
D: Yeah, that’s certainly true. I cannot change what is going to happen, but I can make my sons aware
of what may happen to them.
W: I would be honored to receive a copy of that letter, I think I would learn a lot from your words.
D: Well, certainly, I would be glad to include you. Thank you for asking.
W: Actually Dave, I think there are a lot of people who would benefit from reading your letter. You
are showing so much courage, and you are so honest. I think people would appreciate hearing from
you.
D: Thank you for saying something. I’m just sliding down the slope. Sometimes I feel like I’m out of
control, but I suppose it’s a slope we all slide down at some point.
W: Dave, as you slide if you come across a snag, grab on and give me a call.
D: Heh heh! I could do that. Thank you for bein’ there for me.
Dave introduced the notion of “sliding down the slope” in our conversations, and the metaphor became a central part of many of the talks we had as he described what was happening to him.
When we spoke of the slide, I would visualize the fear-filled joy of sledding down a steep snow-covered slope that is filled with trees, rocks, and other snags [his word] along the way. There are also, however, portions of the slope that are just plain fun.
The fear part of the ride comes from imagining what would happen should I smack into one of those snags. Focusing on the snag rather than the ride interferes with experiencing the joy and creates a frightful story of tension and distress.
The joyful part of the ride comes when I let go and sail past the snags. Sliding past a snag without a second thought allows me to be in that moment. I can enjoy the love that I experience as people around me remove or cushion the snags. Just as Dave did for me by providing this metaphor in our on-going conversation.
People offer support because they care. Care givers choose their profession because they care about easing the pains of others. Loved ones remove snags because they love us. By his example, Dave is teaching me to let my loved ones love me.
March
D: Hey, I am calling those who have left me messages just to make sure we connected. How are you
doing?
W: So great to hear from you. To be honest, I am a bit overwhelmed with all the issues around my
mom’s death. Some of the stuff I am dealing with is really hard which is to be expected, but some
of the estate stuff feels just painful without reason.
D: Yeah. I have a lot of folks around me who are smoothing my slide.
W: Your slide? What’s happening on your slide?
D: Well, this is my final slide down the slope. At the bottom of the slide, I will be gone.
W: Dave, you are showing such courage and acceptance.
D: Well, it kinda doesn’t matter how I feel about it, so I may as well just enjoy the slide.
I have heard it said that of 100 things that we worry about only 8 come to pass and most of those are not as serious as we make them out to be. Mindfulness practice creates the opportunity to view those snags for what they are, just snags on the path. If we choose, we can notice them as we sail by without building up a story around them.
Dave is teaching me to enjoy the slide. Many of the snags will have little or no effect on the ride so long as we do not dwell on them. Sometimes we must notice a snag in order to steer around it, and by sharing the slide with others, people who care about us will manage the snag with us or for us. We are providing them with opportunities to relieve us of a snag as an expression of their love.
Dave, thank you for sharing your slide with me. Thank you for providing a loving example of the power of letting go. Thank you for giving me an opportunity to express my love for you and to ease your snags somewhat. I did not always know what to say, but as I bumbled through my words, you just let me be. In just being, I eased your slide, and in easing your ride I am now better able to enjoy my own slide. I don’t know when my final slide will begin, but you have given me courage to let go and enjoy. Thank you, Dave. I love you.
Postlude
Dave has moved to a memory care facility to provide more security and services as he faces diminishing capacity. He continues to receive support from his network of friends and family. Sometimes he struggles with fears of life, which I suppose is true for all of us throughout our lives. Why would we expect the worries in our mind to disappear simply because our memory takes an interesting turn?
Dave also continues to love and support those around him as he always has. He continues to live a life with everyday frustrations and also with activities and thoughts of bettering the future for others. His partner recently reported, “Last week, he was running for president of the US; this week he is part of a group of men trying ‘to change the system’.” Dave inspires those around him. He certainly inspires me.
By Wade McJacobs