The Emotional Toll of Caregiving

I spent my days in the hospital near mom when she was hospitalized with her last illness.  She started out optimistic (we both were) that she would make a swift recovery.  Every day there were setbacks and she started getting discouraged.  “Don’t leave me, Lori” she said.  “I need you”.  I promised I would be there with her every day and I was.  Still I was unable to get the doctors to communicate with me honestly so we could keep abreast of her health issues.  Day by day she was more and more uncomfortable.

I was mom’s advocate in the hospital.  I was the one who asked for a nurse to turn her to be comfortable, to ask for ice or some water for her thirst, etc.  Mom said “I don’t want dad to see me like this.  He doesn’t like hospitals.  He can visit me when I get to the rehab center”.  We called dad from mom’s hospital room so she could talk to him.  Before her second surgery, the doctor suggested that dad see her as she was 90 and might not survive the operation.  That was the only time he talked honestly about her chances.  Dad visited for a short time and then not again for about a week.

I asked the doctors daily for honesty in response to my questions about her chances of recovery.  The doctor remained overly optimistic and unrealistic in their prognosis to me.  Finally I decided to get a hospice consult even though it was in the midst of the holidays.  Everyone was busy but they talked to me for 45 minutes.  A few days later I asked them to talk to mom as she was very uncomfortable and I didn’t believe she was likely to recover.  It took 4 more days to get the hospice doctor to her bedside.  He explained the difference between “comfort care” and “curative care”.  She already had a DNR and other papers, but now it really had to be spelled out.  What did she want to continue and did she want pain relief.  About 4 hours later, she asked me to tell the doctors she wanted hospice.  She wanted just comfort care as all the tests they were doing daily were wearing her out, causing her discomfort and not likely to improve or expand her life.

It took 6 hours to get the 2 doctor’s signatures that were necessary for her to go onto hospice care.  Shortly after that I left for the day.  The next day I brought dad to visit and we went to her new room where she was sleeping with quiet music playing.  She slept too deeply and we couldn’t talk to her.  The nurse thought mom would be more likely to be awake the next day after she rested more from her exhaustion of all that pain and testing.

Instead she passed away in the night.  The hospital called me and I told dad the next morning.  It was such an emotional reaction I didn’t know how to react.   Dad just curled up into a little ball in his bed and said: “What am I going to do?  What am I going to do?”  I started to cry.  Dad then said: “Don’t leave me, Lori.  I need you”.  I promised dad I would stay with him and when he was ready I would move him to a new assisted living facility near my home.  He hadn’t wanted to live in the Northeast before, but now he was ready.

That was a year ago.  Now dad lives near me and I visit him almost every day.  Dad still has Alzheimer’s but is aware of who I am and where he is.  He forgets what we did last week but he knows most things from the more distant past.

About letstalkaboutfamily

I am a retired and was the primary caregiver for both my parents before they passed. I have children and grandchildren. This blog is an attempt to connect with other caregivers and share ideas and experiences. I hope you will let me know what worked for you if you had an experience similar to mine. The main issues I am going to talk about are elder care, death and dying, assisted living, family relationships and hoarders and hoarding. Other topics will come up as I address the issues and my relationship with other family members.
This entry was posted in Alzheimer's Disease, Caregiving, death and dying, Eldercare, Family and tagged , , , , , , , . Bookmark the permalink.

12 Responses to The Emotional Toll of Caregiving

  1. My heart goes out to you for your mom and your dad. They sound like wonderful parents! Thank you for sharing.

  2. Thank you, Christine. I am thankful to be able to be with my parents. While I was working full time it was difficult to find time to visit and to give them the emotional support and find the help that they needed. I used to pray that they would live long enough so that I could spend more time with them after I retired, and my prayers were answered. It was difficult, but very rewarding to be with them as they became more frail and then had problems with dementia. I wouldn’t trade this opportunity for anything.

  3. I was very moved by your story. Your mother was blessed to have you by her bedside in her last days and to pass in peace. And your father is very lucky to have you close by him and to keep him company. You are very kind and so giving. Thanks for sharing.

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