This life as a caregiver is nothing but repetition, day in, day out. It is the same story every day with only minor variations of a theme. Even the days of drama have a sameness to them. It is a waiting game, a race to the finish. Who will get there first? I wonder if I could even exist outside this shackled life, if my feet will fumble the moment I am off my Sisyphean path.
I have tried to stop the daydreams of other things. Of travel. Of love. Of variety. The sameness stretches out before me like a long, well-traveled road I know too intimately. Every curve, hill and bump has been covered countless times with only the timing of the inevitable end shrouded and uncertain in the distance. When I dream of a fork in the road, my way is always blocked. I cannot tear my way through because one of us cannot travel that route and I must not leave my companion behind. The daydreams must stop.
So I am destined to travel back and forth on this rutted path, covering the same ground repeatedly, wheels spinning, the ruts deepening. The few words spoken each day must not vary, the messages must be as simple as possible: "Arms up," as I pull off a sodden nightshirt each morning; "Put the pills in your hand. Now take a drink. Swallow," at the end of the day when even that action can prove too difficult to complete without instruction. I try other words, pretend to converse, but I am almost always alone, always stuck in a monologue.
We live in a circular present. We cannot make plans because there is no future for us together beyond the limbo we live in here and now, to be repeated how many more times. We are both drifting into the past in our heads, he in his choice of movies - old westerns and war movies from his youth - and I into the hazy memories of our past life together before this disease took it all away, those memories the only things that sustain me through the sameness. I travel those old roads daily to remind myself of the warm, devastatingly handsome man I once knew.
It is my dream life that knows no boundaries. It is where I travel. I love. I rage and roar. I laugh. I cry. I dance and scream. But it is of no consequence. It is but a fantasy world that cannot be reached on this road I travel. It is to remain an unwritten story.
So I bid adieu for now. I may be back, but unless the road widens and the landscape changes, I see no point in the travelogue anymore. It is but endless repetition.
It is time for me to write of other things.
*Sisyphus
So sad. Both for you and for Michael. I selfishly do not want you to quit blogging, hope you will find something else that interests you to write about. But I do know how much caregiving consumes your time. I feel so privileged to have found you, not only for your brilliant prose but for your friendship. Keep us posted at least on how Michael is getting along from time to time, and please, please take care of your own health! Love to you both!
ReplyDeleteBruce, you are a gem. I will most certainly keep everyone posted when there is something new to report, which could be sooner rather than later, you never know. I have appreciated your faithful and positive commentary. You are one of the strong ones who inspire me.
DeleteLove, Claire
Dearest caregiver and writer,
ReplyDeleteI guess that is it maybe, caregiver first and then writer. Not matter what, you need to listen to yourself and I respect that. I also feel that the time before your birthday is bringing up layers of "stuff" ( Rudolf Steiner) and that that too shall pass. Some other writings in some other season... Now it's time to swim as much as you dare, take M. out for a drive with open windows and loud music. he will love it as well, peut-etre.You write we love you, you do not write this blog, we love you. Some things that do not change are very good, as you know. Courage mon amie.
Claire;
ReplyDeleteI've read your writing faithfully since I first found you on the net, and will miss your well-written pieces, humor (black or otherwise) and realistic description of life as you live it. You have been an encouragement for me in both the writing (as we take a similar "day-to-day" approach) and your dedication to persevering (doing the right thing) even when it doesn't feel great. Your decision confronts my decision to proceed, notwithstanding that it has been three years as of next month. Our situations are different of course, as mine is an ever evolving/devolving game of strategy against my evasive enemy. But, if like you I no longer enjoyed the process, I would have to stop as well.
Blessings on you. Please keep writing, not just for your sake, but for mine. My favorite line out of "Finding Nemo" is Dorie the encourager saying, "just keep swimming". So…
Bob
Dear Bob,
DeleteYour comments made me weep. Thank you.
My writing will continue but is taking a different direction, thanks to the confidence I've gained through this blog-writing process. I'm dabbling in fiction..."dabbling" being the operative word since this caregiving job doesn't allow the focus needed for that craft. We'll see.
As for this blog, I will add an occasional post as new situations arise - and they will - but I am feeling as though there has really been nothing new for quite a while and I am going more into my own brain than the external reality of the job. But Michael is very good at throwing me curve balls so there may very well be new adventures to narrate in the not-so-distant future.
Blessings right back at you, Bob. Your story is a wonderful one to read. You are an inspiration as are all the Parkies I've met along this road. For all the people who say they could not imagine the path I am on, there are so many, like you and Michael and Bruce Potts (poet), whose journeys and stories are testimonies to the strength and resilience of the human spirit, who show true grit. I am merely one who humbly serves.
Claire
Claire, I was very sad to read that you won't be posting regularly any more. I can't tell you how important your writing has become to me over the last three years--both the beauty of the words and the ideas. Even though your life has been restricted, your words have soared around the world and have been an important part of our lives. I wish you and Michael all the best.
ReplyDeleteDear Terri
ReplyDeleteI've heard from many, both here as comments and elsewhere, that they wish me to continue. Please be assured that I will write again.
As I reflect on my last post, it was written in a moment of frustration at the height of a summer that stretches endlessly before me with little chance of any change in routine, a time I associate with travel and fun in the past. I have been struggling for topics lately simply because things are so stable with Michael - thank God - and anything I can write about, I've already covered.
Thank you for your kind words. I will post again but perhaps not for a while. Or maybe tomorrow if there's a reason to.
Dear Claire,
ReplyDeleteI just discovered your blog posts today after I was searching for an answer to an issue with my mother, who is battling sudden onset end stage Parkinson's now. I have only been living the "circular life" you describe since February but I so get it. I have seen most of the things you have described in some of your posts happen to my mother but in a closer span of time. She lives with me as well so I am the primary caregiver. Kudos to you for keeping it together and sharing with the rest of us. I'll go back as time permits and read more of your posts. You have a wonderful talent. Wishing you both well,take care.
Sincerely,
A kindred spirit also named Claire....