The Long Haul

It has now been over nine months since my mother’s stroke. We’ve experienced several seasons of her prognosis. I’ve felt that each season has required a different response from me.

When my mother first had the stroke, I stepped into the war zone of my emotions, trying to be ever present and functional as medical staff triaged her towards “survival.” This season lasted only a day or two.

During the next season, my mother worked hard at rehabbing. The goal was for her to improve from “precarious existence” to “some truncated version of independent living.” During that time, I rabbitted around doing, doing, and doing. My focus was on doing all the administrative things to keep her life on hold and making sure nothing fell through the cracks so there was nothing to distract my mom from just getting better. I also invested my efforts in being her cheerleader and motivator.  I concentrated on trying to share the rehab process with her, as if my doing the exercises with her could somehow take part of the yoke from her shoulders. I also tried desperately to provide some sort of normalcy and memory of what “real life” was like. I remember regularly pushing her wheelchair around the rehab facility in the hot, humid Florida weather. My goal for that little adventure in exhaustion and dehydration was to remind her how much she enjoyed just being out of doors.  I wanted to show her that she could still enjoy some of her favorite things about living.

I think my mother knew before I did that things were not going to work out in the way I wanted. The season changed. It became darker and bleaker. The rehab wasn’t working.  My mother’s life got smaller instead of larger as she kept struggling with the physical and occupational therapy. As her life got smaller, so did the number of life experiences she could still enjoy. She became so, so weary. She declined physically and emotionally.  We seemed to have entered a season of good-bye. The hospice people believed she would pass quietly within a few days or weeks.

When someone you love is in their last days or weeks, everything in life changes. My life became all about her. During this short-term season, I spent much of my time just being with her at the hospice center. We didn’t talk much. We didn’t really do anything. I was just there. She ate almost nothing.  She slept a lot. I think she was just worn out from the months of battling to make progress in rehab and from the emotional effort it took her to accept her reality and decide to just let things be.  I did nothing to keep my life running that didn’t absolutely have to be done. I didn’t make much progress on the tasks needed to manage the financial side of my mother’s life either. Anything that wasn’t boiling over got pushed to the back burner, including my own feelings.

Once my mother had this opportunity to rest her weary body and soul, she stabilized and the season changed again. While it was clear she was never going to get better, it appeared that she would survive beyond the short term… whatever that might be. She was still journeying rather purposefully towards the end of life, but she was traveling at a languid pace. Sometimes, I think that pace has slowed for a reason.  This new season has given her time to look at the totality of her life in a clearer, less confused way than she could during the rehab or hospice seasons.  It has given us both the chance to reconnect in a more meaningful way.  Whatever the reason for the slower pace, it is her pace and it needs to be what it is.

Now, we seem to be managing her illness and journey towards her end of life for the “long haul,” if one can speak of the journey towards the end of life as the “long haul.”   The response must change. My role in this season has been to suggest and implement ways to make her memories and connections more satisfying and concrete.  I’ve bought laptop computers and portable DVD players to show her family pictures and videos. I’ve suggested particular movies and television shows for us to watch together that have meant something to us in the past. I call and face time my brother regularly from her nursing home room so that they can interact I’ve kept up with her friends in California, which results in those folks sending her emails and cards.

I have to acknowledge, though, that it is no longer possible for me to react in the same way I did while my mother was at the hospice house. All those practical and logistical tasks that I postponed during that sad, strange short haul have to be dealt with at some point. I must invest some time and energy in other relationships, if I want those relationships to survive the long haul of my mother’s decline. I have to feel the feelings that I pushed to the back burner when the only thing that mattered was my mother’s comfort. I need to take time for myself to replenish the reserves of strength that I’ve been depleting over the past nine months.  Over the long haul, my life has to be about more than watching my mother come to the end of hers.

I struggle with how to prioritize and balance over the long haul. I’m confident that my mother likes it when I live in a world outside her narrow one. She enjoys the pictures and stories I bring back to her after my “day off” each week. It is still pretty excruciating to leave her, for a lot of reasons. It is still exhausting to conduct my life with the extra layer of hurt over my shoulders that doesn’t ever really disappear. In some ways, of course, the short haul season was more difficult because it was so dark and intense and lonely. The long haul has been lighter and more purposeful. On the other hand, the long haul is just so relentless. I am so aware that I have no idea how much longer this way of life will continue. I have no idea how much longer I will be rearranging my days to visit the nursing home during my mother’s “sweet spot” of alertness. I have no idea how many more days I will have to do what needs to be done to manage her affairs. I have no idea when I will run out of strategies to keep her engaged.  I have no idea how long I can handle the grief. I have no idea what is ahead and how far ahead it is, except that the situation is likely only to get worse. As difficult as the “now”  is and as difficult as it is to journey this path with my mother, it hits me in the gut that the day is coming when I won’t be traveling with my mother anymore. That reality sneaks up on me from a dark, cold corner of my brain on a regular basis.  I am terrified of what it will feel like when it happens.

Sometimes I think I cannot face all the sorrow and fear one more day. Then I realize, I don’t have to face it for one more day. Right here, right now, I only have to do it today. I do much better when I keep my eyes and heart focused directly in the present. I can go to the nursing home today. I can think of ways, however small, to make my mother happier today. I can handle seeing her pain today. I can avoid experiencing the pain associated with my mother’s eventual death today.

What is the answer to handling the stress of everything related to my mother’s illness over the long haul? The short haul.

What do you think?  How does a person balance the needs of oneself  with the needs of others?  Please share your perspective by leaving a comment.  In the alternative, you can email me at terriretirement@gmail.com.  

Have safe travels today!

Terri 🙂

PS For those of you who read last week’s post, I wanted to provide an update.  Last Thursday, when I was walking into the nursing facility, I noticed that the warped places in the pavement are now covered by cement structures that look like speed bumps.  Apparently, my nice gardener guy did more than just help me up and clean up my mess.  I’m glad they fixed the problem!