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Tuesdays with Mom
A daughter's caregiving journey

I'm Not ready

2/14/2018

2 Comments

 
​"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
2 Comments
Donna Reynolds link
6/15/2018 04:29:38 pm

Hi Deb,

Yes, you can do this. Yes, you are ready. The last six years have prepared you for this part of the journey. It is hard. It will BE hard. But it is the most loving thing you can continue to do at this late chapter in the story. You are the most well versed with your Mom's illnesses, health, and her various doctors.

As her advocate, you can probably call any specific health crisis event to mind, and remember each Dr that saw her in the ER, the ICU, the pre- and post- op rooms, and may even be on a first name basis with the nurses if you are a frequent-flyer to the same ward in the hospital. The folks at the VNA are wonderful, and the Somerset Hills office is superb! Each day it is hard to face whatever will unfold, yet you do it. Over and over. There is a numbness and there is also a comfort in the routine - even as it morphs a little bit each day.

Stay strong, my friend. Whether we like it or not, it is great work that we do here - and remember: we chose this. Yes, your mother's journey will unfold and unwind in its own time. Mine just ended in March after only 22 months. Yet I can tell you that along with the huge hole that suddenly opens in your days, you will be filled with the complete peace that is in your heart for the heroic journey that you walked alongside of her and your Dad. And it is a heroic path because you made things just a little bit better for her at every turn. To the best of your ability and understanding. And that is epic for your Mom.

As for my experience, the hospice folks were very caring, very understanding, and attentive to my mother's needs. The last three weeks I stayed 'round the clock, even through the nor'easters in Feb. The night nurse was especially compassionate and would remind me regularly to take care of my Self as well. And that was hard. It felt selfish when Mom was winding down. I completely understand the quandary and mix of emotions. I am here for you, Deb. Please let me know how I can assist you.

Sending Love and Peace-filled energy.

- Donna

Reply
Deb Wilber
6/27/2018 01:52:33 pm

Donna, thank you for your words of encouragement and sharing your experience. It's a journey. XOXO Deb

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    Debbie moulton

    Debbie is a wife, daughter, sister, aunt and friend to many.  She served as a part-time caregiver and full-time advocate for her mother, Barbara, who passed away from Parkinson's, Alzheimer's and Dementia in July 2018.  Her mission is to help caregivers not only survive but thrive during their caregiving journey!  

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