“Each person deserves a day away in which no problems are confronted, no solutions searched for.”
Maya Angelou
I'm heading to Florida this week to present at a conference. It has been quite a long time since I've done this. I miss traveling and meeting with colleagues. Traveling with Donna has changed exponentially over the past few years, and it is something we no longer do. We may go visit friends, but we no longer go to new places, no longer jaunt off on a weekend somewhere, no road trips, no planes. We won't ever make the drive to Alabama again to see my mom because the experience is so disorienting for Donna. So going to Florida feels as exciting as if I was headed to China!
I shall be wearing new jewelry too - on this trip, and every day - a Medical Alert bracelet. Mine says: Caregiver for ####. Donna's says: Memory Impaired... My name is Donna.
As a solo caregiver this means that if something happens to me then first responders will know that I am a caregiver and they can call or log into the information associated with the ID numbers on the bracelet. This is peace of mind for me that assures me that someone will spring into action for Donna if need be. Her bracelet reassures me that if she wanders then this is as close as a microchip as I can get to making sure she is 'returned to sender.'
I thought she might hate the idea of the bracelet, but she said, "Thank you, honey, thank you, thank you." I honestly believe that on some level she understands why we have these bracelets. She surprises me by her capacity to comprehend the subtle things, and her inability to make sense of the simple things. She still has times when she knows how hard things are for her. Recently I asked her, "Do you know what Alzheimer's is?" and she replied, "It is me." One thing is certain - Donna hasn't forgotten how to have fun! She experiences joy nearly every day. All the complexities and demands of life that bog us down as adults have disappeared for Donna. Yes, she is lonely. Yes, she is sad. Yes, she understands the loss of people who have disappointed us both by their disappearance. However, Donna is 'lucky' to not be plagued by the recurrence of those feelings. She simply moves on without any effort required.
I haven't had a trip alone in a few years, and when I have had a day or two of respite I have spent them at home alone. Last week someone told me that I had forgotten how to have fun. I've been thinking about that a lot, and recognize the significance of that statement. So, while Florida is not just a trip for leisure, it will hopefully remind me that I can have fun again, and that respite shouldn't always be a reclusive experience.
Donna will be staying with family because she can't stay home alone. Again, while I expected she might balk a bit at the need to stay somewhere else, she again said, "Thank you, honey. Thank you. Thank you." I can't impose on them too often, but they are the only option I have for respite now. In time, the caregiver may be able to stay here for a few days, but she is not familiar enough to do that yet. So, wish me well. No matter the weather I'll be glad to be somewhere other than home. I'll even try to have fun!
Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.
Lao Tzu
Anyone who knows Donna and I, not singularly, but as the us that we are would know that this quote embodies all that is the most simple and most complex truth of who we are.
Yesterday we went out to grab a bite to eat. I said it was in celebration of the news that the roof repairs would be far more affordable than I had feared. It was that, but also I was just too tired to cook. Donna loves wine, but I don't buy it very much because she simply cannot remember how much she has had to drink. I got tired of coming home to her being sauced, not to mention that I think it was making her more depressed than happy. But when we go out she savors that glass of wine as if she has crossed the desert and come upon an oasis.
After we came home we were sitting and listening to some music and I asked Donna if she knew what Alzheimer's is. She said, very matter-of-factly, "It is me." I was taken aback at her response and even more by what she said afterwards - which you must keep in mind comes in a circuitous pathway of words - but the essence was this:
"Every day I am glad to have another day, and I don't want to be sad."
I am frequently the recipient of messages that praise or admire my strength and my courage, but it is often only me who shares those sentiments with Donna. I tell her how much I appreciate that she fights to keep going, and that she tries to be happy. It is excruciating to watch her slip away, but she does not give in to the overwhelming sadness that the Alzheimer's diagnosis could bring. She never has. If you know anything about Donna's life history you might not be surprised by her resilience and yet shake your head at how she responds to the fate that awaits. Shortly after the shock of the diagnosis work off, Donna quipped, "You know, I had a hard life but I hope I forget all those times and remember the best years."
She, and Lao Tzu, are pretty smart!
“Not the power to remember, but its very opposite, the power to forget, is a necessary condition for our existence.”
Sholem Asch
It is sometimes maddening to live with someone who forgets almost everything. We can spend an entire day together out of the house, running errands, having lunch, laughing, enjoying the moments and when we pull into the driveway Donna will turn to me as she fumbles to find her house keys and say, "Where do you live?" The sting is immediate and harsh as if she'd slapped my face. I try hard not to let her see my reaction because she always looked so puzzled, as if to say, "What did I say that caused you to look so hurt?"
I have long since learned to live with the endlessly repetitive questions such as "Where are we going?" or "What day is it?" or "Did you have a good day?" If I couldn't live with these repetitions they would slowly but surely erode away my natural optimism. I made a choice early on that I was not going to live through these years in a state of aggravation over things she cannot control. Keep in mind I am not perfect. I lose my patience. Luckily she forgets quite quickly, but it takes me longer.
Forgetting is still a skill that I must practice. I practice forgetting the days that she doesn't know who I am. I practice forgetting how annoyed I can become by her complaints that she never gets out of the house. I practice forgetting the endless list of worries that can clog my mind like a backed up sink.
Every day I work to forget the things that could rapidly overshadow the memories I want to keep.
