Send Cathy a text:)

It’s strange to plan out the next 6 weeks of your life.   It’s figuring out everything.   Denis won’t be able to come home and if I do, it will be for a short day or so (if that’s even possible).  I sure wish it was planning a trip for 6 weeks vs this

The unknown and uncertainty can bring up a whole lot of things.   Emotions, anxiety, stress, and more.  But it also can be a reminder that we don’t have control over what happens.  

To be honest, I hate it.   I want to be in the driver’s seat. And If I can’t drive, I want to be sitting in the passenger seat, giving them the navigation instructions.    The transplant coordinator is scheduling everything out right now.  Dates, times, a calendar that looks like a project plan.   But the plan also reminds me of a school schedule - each day is a time/ procedure, location (building, floor, room and where to park each day).  Each procedure has preparation, during care and after care instructions.  

At any given time as a caregiver, our loved ones disease, illness and path can change.  When that happens, our role as a caregiver changes.    Just when you think you are “getting it” and mastering all the skillsets, it changes.   Your caregiver role pushes you to another level and you may not even asked for it.  

As I am reading this Blood and Marrow Transplant  / Autologous Transplant Guidebook this week,  it had over 300 pages of very good information explaining the process, procedures, and therapies.  It goes over diets, resources, maps, and all the care instructions from pre transplant through post transplant.     But again, what I found is that there is very little information for caregiver instructions.  

People who undergo a transplant need a personal caregiver to help with their treatment and recovery. Your caregiver should be a responsible family member or friend who can provide physical care, observation, and emotional support for you throughout the transplant process. As part of planning ahead for your transplant, it is important to decide who can be your caregiver.

This next stage of my journey is like  a new job and the job description isn’ written.   I kind of know what I have to do but not exactly.  So I took a step back and listed out my new responsibilities

• Getting him to every apt and accompanying as his advocate
• Providing emotional support
• Physical care (meds, cooking, bathing, cleaning, laundry), monitoring his medical changes
• At lodging and at home care will look different - grocery shopping, pharmacy 
• Home - maintenance for next 6 months
• Home sitter and dog sitter 
• Communication with doctors and coordinators
• Insurance process, filing claims
• Finding time for myself - volunteer services 

As caregivers, we'll never be able to figure it all out.  But we have to do our best.   Part of doing our best is being real with ourself and the situation.     Things will not go as planned and you can’t control everything.  What I know I can control is myself.   There will be down time and I need to take advantage of that.    I know what works for me  - exercise, eating well, journaling and rest.   

Let me share Maya Angelou’s quote   "Do the best you can until you know better.  Then when you know better, do better. " 

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