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 🙂