The Caregiver Finds Something That He Will Remember

If you have ever been on a long plane ride, say more than 12 hours, inevitably you have prepared by carrying on all sorts of things and clothes and snacks to stay you through that long journey. Equally inevitably you have built your seat and its immediate surrounds into your personal habitat. Things meant to be easily accessible are removed from where you had stowed them, a sweater pulled out and unfolded, books and magazines in the pocket, everything that you want or need for those hours is available.

As the end of the journey is in sight, the realization that everything that is unpacked needs to be repacked, long before the plane actually touches down, you have begun to put things back in their stowed-away places and readied what you need for the exit from the plane into a new world.

I am in that place now, Jackie is in in-home hospice. Hospice is an existential state for Jackie’s disease; there was never any cure or even treatments of the actual disease but only attempts to beat back situations that would hasten her death. She is now past that point; since her last UTI, her situation has degraded to a point where the end is somewhere within sight. She recognizes me and her daily care givers, she is accepting of the presence of others with a kind of bland smile that shows no understanding of who they are.

She cannot walk at all or sit without support. She seems to understand only very little and cannot speak intelligibly, except on the rare occasion when a garbled phrase has some plausible meaning in the situation. Yesterday she said to her daily caregiver something that could, with all positive intent given, be understood as ‘I haven’t seen you for a long time.’ It is painful that the one phrase she seems to have said reveals how her memory is dissolving.

She spends her days watching friendly television, costume pieces or children’s programs or sitting in a wheelchair in the sun room. Strangely enough, she who loved plants and flowers and the views out of the window and, just a week ago would sit, paging through colorful magazines and catalogs, now just stares at the world around her usually with no indication that she is thinking or feeling anything.

Although I don’t know when my beloved Jackie will die, I have recognized that her death will bring a sort of paralysis of grief in me and I won’t have the energy or the desire to sort through things thus making mistakes and discarding what, in retrospect, I would have wanted to keep.  So addressing this clutter, this mess, this need to sort and order our enormous accumulation of stuff will serve as the perfect activity for this time, useful and just engrossing enough as a puzzle that it should fill all the reaming months.

Besides filling my time with useful work,  the activity is soothing in an odd way in that I know will not have face this task later. It also reduces the irritation I felt constantly when faced with the enormous mounds of paper and just plain stuff. My office became filled with 35 boxes and four file drawers packed full of paper – my wife not being able to discard any kind of paper, or for that matter discard much of anything at all. Perhaps I am lucky in that we actually threw out garbage routinely.

I am learning about a part of my wife I didn’t know; I am finding mounds of unworn clothing, tags still on, many pairs of shoes, soles unmarked and lots of every conceivable kind of things acquired to meet some anticipated need that never seem to emerge.

There is another habit of Jackie’s that started out irritating but to which I have become calloused.  She has always been the ‘ZipLock Queen.’ If it can fit in a Ziplock, no matter what it is, it goes in a Ziplock. So, as I sort, I come across Ziplock bags everywhere filled with papers or collections of unneeded but kept objects., even finding some large Ziplock bags full of smaller Ziplock bags. This becomes yet another bunch of things to gather and contain; this bunch slippery and prone to cascade off of any chair or table if not firmly situated.

Trying to sort and isolate is a recursive process; I run into problems and places to put things so each room, for a long while, looks as if it was the site of a midsize dumpster explosion.

I was almost done with our bedroom and the attached walk-in closet – not packing things, just gathering up and sorting into what I want to keep and what can easily be given away or donated, when I noticed a bag on the bedside table on Jackie’s side.

These tables are a remembrance of my wife’s grandmother that she had had refinished and fitted with glass tops. They are small, mahogany oval topped with delicate cabriole legs and are clearly not made for anything much more weighty than a book or perhaps a lamp.

Even standing at the foot of the bed, I could see the bag contained a small, disorderly pile of different sized and colored pages; as I got closer, I recognized my possible-to-read handwriting from a long time ago, before typing had let the fine muscle movement of my hands and subsequently my handwriting degenerate .

During the first half of our marriage I traveled an enormous amount and would often write Jackie, even though I knew the letters would arrive home after I did. My trips were routine so my notes were, what would have been thought of as, ‘love letters.’

Since her wont was to save every scrap of paper including bills from stores no longer in existence, it seemed she had kept every one of my letters.

Evidently, sometime in the past few months when her memory still functioned sporadically and she could still walk, in anticipation of a time when she wanted them beside her, she gathered up these letters from wherever she had stored them and put them on the table next to her bed.

She had placed the letters in a spot where, even lying down, she could have seen them just by inclining her head and, if she wanted, could reach out and touch them.

In our back yard, seen from the sun room and framed very nicely in the center of the window is a red bud tree. It is a small tree, yet long-lived, and in the spring for just a few weeks the tree is covered with glorious pink flowers.  I have just now decided that, when I receive Jackie’s ashes, I will bury them, unmarked, at the base of that tree.

The tree is small, not imposing, yet so well shaped that even when the flowers are gone and the branches are bare or covered in snow, there is a constant reminder of its former beauty.

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12 thoughts on “The Caregiver Finds Something That He Will Remember”

  1. You have a way of expressing thoughts and emotions that is poetic and touches the reader. Your observances remind me of behaviors in my own loved one. You take the time to reflect and cherish. Thank you for sharing. One day, i hope you publish this memoir.

  2. Thank you, Lew. Thank you for your deep caring for your wife. Thank you for your observational and analytical powers. Thank you for describing so beautifully what is a painful and oft times mysterious process as the person one loves retreats further and further from being there, being accessible. I am still bereft in grief, but find comfort in my last conversations with my husband; he looked at me directly and said “You know I love you, don’t you?” and “Don’t go.” Then he descended back into psychosis. I am glad for you that you are able to go through this process thoughtful and with the depth of caring that is reflected in. your writing.

  3. Lew, this brought up many emotions in me and I cried, for you and Jackie, for me and Maxine, and for all whose loved ones who have been stolen away by this disease. Knowing how you feel and the place your expressions touch in me, I will grieve Jackie’s passing with you.

  4. Beautifully written. I can relate as I sort through 2 barns and a double garage. May God Bless you, as you approach the end of this journey together.

  5. Your writing is powerful and moving, Lew. So many things resonated in your story. I believe Jackie put that bag on the bedside table for her own comfort, but also for yours — so that you might know what she considered treasure.

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