"I'm going to make the referral for hospice". At first I thought, "Great, we will get more help with Mom!" Then it sunk it, while hospice does provide more help, it's end of life care.
I can keep a stiff upper lip and positive outlook most of the time. The palliative care nurse visit was on a Thursday which was followed by 4 days of Mom not doing well. Lethargic, uncooperative, distant.
When the first hospice company called on Friday to schedule an appointment that afternoon, I said OK. They called back 15 minutes later to say, we were not in their territory and the referral was being transferred.
The second hospice company called on Saturday and this call was different. Lots of information that I really wasn't ready for, more 'end of life' discussions. But this agency was a VNA and not my VNA. After that call I thought, if we are going to do this we will do it with my friends at the VNA of Somerset Hills (VNASH).
Monday morning I hopped on the phone with the Palliative care company to change the referral to VNASH and they were happy to change the referral to an agency with which we were comfortable. Tuesday morning I confirmed the referral had been made and we were in process with an agency we know and trust.
Monday was a particularly hard day. It was a struggle to get her up and out of bed, washed and dressed. She didn't want to take her meds. She refused to eat 2 different breakfasts. She has more strength in her lips and her hands than I do. I sat at the kitchen table frustrated with tears in my eyes. I kept asking her to eat, to respond, to give me more information. Nothing.
I walked with her to the family room and she barely made it down the 2 stairs and into her chair. Once she was settled, it was time for me to go. I left with tears in my eyes and a lot on my mind.
What if this was the beginning of the end? My practical self starts worrying about logistics and finances. My emotional self is simply sad. While Mom doesn't have a great quality of life, she's still there and I can get her to smile and hug me.
I cried my way to Mah Jonng (MJ) and my wise MJ ladies picked me up. They have been through this before and shared stories of bad days followed by good days. One is a hospice volunteer and shared that people go on and off hospice all the time if their health improves. Their message was compassionate and at the same time a pep talk: chin up you are strong and will get through this. I believe people come into your life for a reason. My MJ support team has been with me on this journey with sage advice, a needed laugh and compassion.
Monday night I was still upset (in spite of the MJ pep talk) and couldn't even call my Dad to see how the evening went. When I slept that night I had vivid dreams of a loose tooth. It was odd. It recurred multiple times.
Tuesday morning as I drove to my parents house, I had a pit in my stomach. We had a Dr's appointment for Mom which meant getting her out of the house and into the car. I couldn't imagine this with her behavior the past 4 days. What are we going to do?
When I walked into my mother's room, there she was...bright eyed and ready to get up. She wasn't sweaty. Her blood sugar was great and she was able to sit up and stand up. It was a good day. She ate her breakfast, drank her coffee and walked down the stairs to her chair. The tide had turned, at least for the day. We made it to the Dr and back without incident and I left late in the afternoon feeling OK.
My dream of a loose tooth wouldn't leave me, so eventually I googled it and there are lots of interpretations out there on dreams of losing teeth. I didn't lose a tooth in my dream, it was very wiggly and loose. My interpretation of my dream is a realization that I'm not ready. I'm uncertain of the next steps for my mom and we need to keep pushing forward, asking questions and getting help.
The first step in any plan is to understand the problem you are trying to solve. In my case, the realization that I'm not ready to let go is a big part of planning for the next phase of my mother's life. It's an interesting quandary: It's not about me, it's about her but I can't lose sight of my needs, my father's needs, my sibling's needs, etc. Isn't that the essence of caregiving?
Have you dealt with a family member or caree going on hospice care? What was your experience? I can use moral support through this process and I hope you share your experiences in the comments below.
Wishing you peace, love and sparks of compassion, Deb
Deb is a daughter, sister, aunt and friend to many. She is currently a part-time caregiver and full-time advocate for her mother, Barbara, who suffers from Parkinson's, Alzheimer's and Dementia.