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!

 

The Worst Day Of My Life

The single thing that I’ve dreaded most since my mother’s stroke has come to pass.  We transferred her to a skilled nursing facility.

I thought I was prepared for having her in the nursing home, but I completely fell apart.  The feelings of guilt, shame, and defeat about not being able to care for her at home just overwhelmed me.  After nearly four months of struggling through, I was right back to the worst case scenario we were trying desperately to avoid right after she had the stroke.

After migrating between the rehab and the hospital several times and, finally, going to a hospice house, it seemed that death was not imminent for my mother.  It was also clear that she really was not going to get better. Truthfully, she has been declining since her first rehospitalization after the stroke.  She did pretty well in rehab the first month after the attack, but appeared to start on a downhill road when she went back into the hospital for some auxiliary issues.  That road included several moves between the hospital and rehab facility.  That road was pitted with many physical, emotional, and mental obstacles.  While the doctors were able to stabilize the physical obstacles, her ability to process thoughts and communicate seemed to be fading away.

It appears that she continues to suffer from stroke-related language and cognitive impairment.  This is fairly common in stroke patients and, given my mother’s particular set of circumstances, it is likely that it will get worse over time.  It is similar to Alzheimer’s Disease, except that the cause and progression of the condition are different.  The condition can cause death, but usually the patient passes from something else first.

By the time she went to the hospice house, the medical staff believed that the combination of the obstacles she was fighting would prove to be too massive for her to overcome.  They believed it was likely that she would pass within a few days or weeks.  However, something clicked in my mom’s brain, and she started to adjust to her condition.  The hospice staff changed the prognosis.  They still believe her condition is terminal and they are still going to provide supportive care, but they no longer believe she is in her last days.  Because the actual hospice house is only intended for patients in the last stages of death whose symptoms cannot be managed in a “regular” (home, nursing home, assisted living, etc.) setting, the staff reluctantly advised me that it was time to find a longer-term residence for her.

Before she went to the hospice house, I worked with staff from what I call an “assisted living plus” facility.  It is an assisted living facility with additional medical certifications that allow them to provide a higher level of care than most places.  For most of my mother’s illness, our goal had been to get her strong enough to be able to live there.  It seemed an ideal answer. It would be like she was living in a little apartment of her own, with privacy and as much independence as she wanted and could manage.  Unfortunately, by the time she was facing release from the hospital for the last time, the assisted living facility staff evaluated her status and found that her needs were just too far beyond what even they could handle.

Kicking and screaming, I started looking at skilled nursing facilities.  This is a tricky matter for many reasons, but one of the most difficult to manage is the fact that many nursing facilities operate at full capacity. They have lengthy waiting lists.  In evaluating the residences, I had to balance quality ratings from Medicare, online reviews, my own observations on visits, availability, and proximity to my home.  Of course, the facilities with the highest ratings were also the ones with the lowest availability.  I ultimately picked one that seemed okay, had reasonably good ratings and reviews, and had availability.  An added bonus was that the facility is very close to my home.

When I checked on my mother once she was at the new place, she seemed okay… calm and content.  I was far from okay.  The residence was not bright and shiny and new.  The neighborhood wasn’t affluent.  At times, I could hear other residents crying and yelling.  Some of the other patients were holding stuffed toys or baby dolls, clearly convinced that these objects were real.  I’ve always said that, wherever my mom ended up, I hoped she would have a quality of life approximating or at least reflecting what her life was about when she was living it fully.  I wanted her to be in a setting that would help her form a social network with people who could become friends.  I didn’t want her to be the most able person and be surrounded by people living shadow lives.  I thought that would depress her and lead her down the same shaky path.  Now, I was leaving her in a place where she was living with people in just the situation I dreaded.  Unfortunately, the gut-crusher is that she became one of those people before she ever got to the nursing facility. In fact, I’ve learned that it isn’t so much that people who live in nursing homes have a severely reduced quality of life.  It is more the reverse.  People who have a severely reduced quality of life move to nursing homes.

Paradoxically, part of the sadness and guilt over placing my mother in the nursing home comes from the fact that my mother’s cognitive and language skills seemed to improve somewhat over the past couple of days before the move. Originally, I didn’t feel quite so bad about the nursing home because my mother seemed to be withdrawing from the external world- not being very communicative or alert.  Everything I read about hospice talked about this withdrawal as being typical when people approach the end of life. The way she was withdrawing and sleeping so much, it didn’t seem to matter too much where she was.  As long as it was clean and safe and met her basic needs and I was there frequently, I didn’t think it was going to make much difference to her.  Then, just as the hospice people were getting ready to transfer her to a nursing home, she started consuming a bit more fluid and nourishment, staying awake much more of the time, and talking more clearly about more sophisticated ideas than she had since the stroke.  I was almost sorry because it made the move to the nursing home seem worse.

Still, as time goes on, I am encouraged.  My mother is truly only experiencing the tiniest sliver of the quality of life she enjoyed before the stroke.  However, she continues to seem content, comfortable, and reasonably happy at the nursing home. Her cognitive and language skills are spotty, but I appreciate that there have been times when I’ve been able to communicate with a person who really did seem like my mom again. Because the nursing home is the longer term living situation, a lot of things are easier… both for my mother and for me.  The health care professionals are very responsive and practical.  The administrative side of the operation has been helpful and understanding.  Between the nursing home staff and the hospice folks that work with them, they are finding ways to make my mom’s life more comfortable.  They spend time with her.  They talk with her.  They are truly caring.  On the other hand, they respect her wishes and don’t bother her by pushing her to do things she doesn’t want to do.

Maybe the most important factor in my journey towards acceptance of this new reality is that my role as caretaker is changing now.  Since the medical staff is pretty much on the same page as my mother and me as to the type of care she wants, I have to fight fewer battles as her advocate.  Since she is now where she is going to be for whatever time God has left for her in this world, I don’t have to keep analyzing different residential options.  I’ve retained a law firm to help me with the financial burden and I’m working through the administrative issues more methodically, so I find I am spending less time and energy on those problems.  My caregiving is now much more about just being with my mom, showing her I love her, and letting her love me.

Since my mother has been in the skilled nursing facility, I get to be just a daughter again.  That has been the best unexpected positive result…. Of the worst day of my life.

My mother has been in the skilled nursing facility for about two months now.  All things considered, everything is going okay.  My mom seems reasonably chipper and content.  I am with her at least six days a week.  I can’t completely shake the sadness and guilt, but I’m holding it at bay most of the time.  My current challenge is finding new ways to communicate and engage her as her language disappears and her thinking becomes more muddled.  Anyone have any ideas for me?  I’d appreciate any suggestions!  Please share your perspective by leaving a comment.  In the alternative, you can email me at terriretirement@gmail.com.

Have a loving day!

Terri 🙂