Could her ‘accidents’ be on purpose?!?

Soon thereafter, we got a call from Clara’s assigned nurse from the Department of Aging. She was required to come out periodically to check on Clara’s status, re-evaluate her need for care, etc. From an earlier visit she knew that my son was getting married and asked about that. I told her a bit about it, and then told her that it seems like every time we are away, the day after we return home Clara has an accident. I told her while it is annoying to deal with, it also makes me feel guilty that me going away has such a detrimental affect on her health. The nurse told me it was very likely Clara was doing it intentionally, as punishment. I could not believe that could be possible, that someone would actually soil themselves to make a point? The consistency of it happening, each time after we were away, made me start believing it was the case. That was information I wished I never knew. At least before when I would feel angry or frustrated, I would try to tell myself this also had to be difficult on Clara, not even having control over her own bodily functions. Now, even the possibility this was ‘payback’ for me getting a break away was hard information for me to swallow.

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After the wedding…

We went down the day before the wedding for the rehearsal dinner, and then came home the morning after the wedding.  I found when I would get a break from caring for Clara, the closer we would get to home, the tenser I would become.  I had to mentally start preparing myself to go back into that role of caregiving.  When we got home I was describing how everything went to Clara and she seemed to enjoy hearing about it.  I excused myself to go unpack, and that is when the phone rang.  “Michele, I had an accident.”  In my mind I was starting to call them an ‘on purpose.’  Reality slapped me in the face way too soon. 

Mike wasn’t leaving until Sunday morning for his honeymoon, and before leaving he called home to thank me and his Dad for all we did, and for the kind of parents we are.  That made everything okay again.  The joy of the wedding memories returned. 

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Changes in the family

I had more things on my mind than Clara, my firstborn son Mike, was getting married. Mike was Clara’s first grandchild, and we lived under the same roof. My feelings were conflicted, on one hand I wanted her there at my son’s wedding, on the other hand, I wanted to enjoy the day and not have to worry about her being there and needing help. Clara was starting to be resistant to the idea of attending the wedding. I spoke with one of her daughter’s who said, “Of course my mother is coming.” I told her that I would be busy that day and she would have to take care of her mother at the wedding and reception. She agreed to that. By now Clara had made up her mind she was not going. Her argument was that the wedding was on a Friday, a dialysis day, and it was a two hour drive away. I told her that her dialysis could be switched to Saturday. Clara said she finds weddings boring and to sit that long in a car, then at the wedding and reception, then the return ride home was too much for her. Part of me had hurt feelings that she wasn’t willing to put much effort forth to attend her grandson’s wedding, feeling confident she would put that effort forth for one of her granddaughters. The other part of me was happy because I could enjoy my son’s wedding without the distraction of my mother-in-law. Clara’s other daughter said she would stay back to take care of her mother. I hated that I felt happier about that decision than sad, but it really did work out for the best.

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That sly fox outwits again!

After a week in the rehabilitation section, Clara was making it loudly known she wanted to go home.  I quietly did love not having her home.  I met with her team again, and they felt confident with Clara continuing her exercises at home, she would continue to gain strength.  I explained that I had arranged for Clara to have physical therapy at home in the past, and while the therapist would come, Clara would give one hundred ten percent knowing the quicker the progress, the quicker her release.  However, she would never continue her exercises after being discharged from therapy.  I expressed my concern that after she was discharged from their care, I was confident she would refuse to do any of the exercises, even the ones she could do sitting down.  This team felt Clara had a renewed enthusiasm for getting better and they were confident she would continue her exercise program at home.  By now I think I was pleading with them not to send her home just yet, saying she needed a few more days of therapy under her belt.  Part of it I wanted a few more days too without being the primary one responsible for Clara.  I was assured things would be fine and at that point I relented.  I knew that sly fox Clara had tricked them into thinking she enjoyed her exercises and would continue with them at home.  Sure enough, she was discharged later that day, and the next morning when I went over to do her exercise routine with her she said, “Not now, maybe later.”  As predicted, later never came.  Clara came home in better condition than before her stroke, but in less than a month, without continuing the exercises, she was back to where she was before all of that therapy.  I had to remind Clara again, physically it was too demanding on me to lift her out of the chair; she had to do it herself. 

 

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“When can I go home?”

The next day I met with her team; her nurses, therapists and social worker.  They asked me what my expectations were.  I told them I required three things from Clara; that she can get out of bed in the morning on her own, get out of her chair without assistance and to the bathroom unassisted.  I then heard their report, Clara had significant loss of motor function on her right side from the stroke, but they were surprised that her left side was also affected.  I kept my mouth shut because most of what was described to me was Clara’s condition before the stroke.  The team felt confident they could help her gain her strength and I knew the stronger Clara was when she returned home, the less wear and tear on my body.  After our meeting, I went to Clara’s room and her first question was, “When can I go home?”  I told Clara she would need some more treatment, and reminded her that she needed to be able to get out of her lazy girl chair at home by herself.  This floor kept Clara busy with differing types of therapies, and she was missing most of her stories in the afternoon, she was not happy.  I reminded her that the more effort she put into physical therapy the quicker she could come home.  I would only visit Clara for about an hour each day, I felt this was my time to get what I needed to get done before Clara’s return home.  Her daughter would come after work and stay until after visiting hours each evening, so I felt like my visit during the day was enough.  Once her other daughter returned from Italy and learned of her mother’s health crisis, she rushed to the hospital.  Then she was back to work and limited in her time to visit.  One day when I arrived for my daily visit, I walked by the nurse’s station to go to Clara’s room and noticed a large group of patients were sitting around a table.  I continued down to Clara’s room and it was empty.  I went back to the nurse’s station to find out if Clara was in therapy, and the nurse pointed to the table of patients.  I didn’t even see Clara when I had walked by before.  The floor was hosting an ice cream social and Clara was in the midst of the patients chatting and laughing, it was nice to see.  Clara seemed delighted that I was there.  I noticed Clara’s hair had been done and when I complimented her on it she told me a hairdresser actually came to the hospital and washed and set her hair.  She was so tickled about that and asked if I had money to pay the girl, when I said yes she said, “Be sure to leave her a good tip.”  I thought back to the morning of our beach trip, looking into Clara’s vacant eyes hearing her grunting, to now, a little over a week later, with a sparkle in her eye and communicating perfectly.  The lady next to Clara asked, “Are you her daughter?”  I answered, “No, I’m her daughter-in-law Michele, it is nice to meet you.”  Clara piped in, “But she is as good as any daughter you could ever hope for.”  She actually teared up when she said it, Clara didn’t express much sentiment and her remarks deeply touched my heart.  I thanked her and told her how delighted I was to see her doing so well.  The ice cream arrived, so I told Clara I would come back later so as not to interrupt their ice cream social.  On the way home I had tears in my eyes as I thought about Clara’s kind words. 

I was Clara’s full time caregiver for 8 years.  I mentioned earlier in this blog that I am posting exerpts from my book, Life with Clara – One Caregiver’s Journey.  My goal has always been that my experience and honesty could help others in this life changing role.  My entire account is available at www.createspace.com/3469034

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