Recently I’ve (re)connected with a nonprofit agency to let them help with aspects of my mother’s care. The agency works with people with developmental disabilities and older adults, and can do a large variety of roles, including guardianship and power of attorneys. The agency is run by the mother of one of my former dance classmates. Small world! We transferred my mother’s financial power of attorney to them.

Karen (head of agency) and Jan (my case manager there) wanted to find a way to semi-compensate me for my past work with my mother. This had to be done carefully because of Medicaid rules. They asked me to write a list of caregiving duties/tasks I did for my mother prior to her entering a nursing facility last year, along with an approximate start date. Easy, right? Nope.

This homework was probably more stressful for me than it should have been. I was thinking that this task would be difficult because the things I do are variable, and more things are added on over time. As I’m sure a lot of you can relate to, as caregivers, we do what needs to be done, because there’s no one else to do them, and as more things pop up, you do those too. And in terms of how long you do certain tasks, it’s not like a regular job where you clock in and out. In my case, you’re on call all the time.

I reached out to someone I know at Senior Services who leads a caregiver support group I used to go to infrequently. I hoped she had worked with someone who had to create a list like I was being asked to do. No such luck, but she did find a couple websites with possible tasks. I found them lacking in the specific focus I was looking for, but here they are if you’re interested:

http://www.familynursingcare.com/home-care/caregiver-task-sheet/

http://www.agis.com/Document/12/home-care-tasks-checklist.aspx

https://www.vantagemobility.com/blog/caregiver-duties-responsibilities-home-care

After putting it off for a while out of fear that I wouldn’t do a good job or forget something important, I used the links as a rough guide for how to categorize the tasks, and then added things that were more specific to my situation. I finally got out of the house and camped out in a cafe for a few hours to put all of this together.

Here’s what I came up with:

Personal Care

  • Sponge bath/bed bath
  • Toe nail care
  • Skin care
  • Monitor for bed/pressure sores
  • Dressing assistance
  • Medication reminders

Nutrition

  • Prepare meals and snacks
  • Encourage fluid intake
  • Purchasing vitamins
  • Purchasing nutritional supplements – Ensure/Glucerna shakes, Pedialyte, etc
  • Meal planning

Companionship

  • Emotional support
  • Providing transportation – scenic drives
  • Coordinating outings in the community – musicals, shows, zoo, arboretum, etc.
  • Accompanying to appointments
  • Reading aloud
  • Playing games
  • Watching videos

Toileting

  • Assistance with bedpan/in-bed toileting when needed
  • Emptying catheter bag when needed
  • Assist with commode transfer from wheelchair

Medical

  • Assistance with blood sugar checks
  • Assistance with blood pressure checks
  • Monitoring vitals
  • Setting up weekly pill organizer
  • Filling prescriptions
  • Picking up prescriptions
  • Coordinating care between doctors and other medical professionals (PT, OT, etc.)
  • Working directly with medical providers
  • Communicating with doctors outside of appointments – preparing and asking questions
  • Scheduling medical appointments
  • Transportation to medical appointments
  • Coordinating transport to appointments via DART/Access, etc. when needed
  • Following medical professional’s care plans
  • Calling insurance company
  • Advocating for services – in-patient rehab, physical therapy, etc.
  • Planning ahead for potential medical issues – Multiple Sclerosis relapses, surgery complications, etc.
  • Educating myself on Nancy’s medical issues – Multiple Sclerosis internet research, webinars, teleconferences, Can Do MS in-person workshop weekend
  • Researching opportunities for participation in research studies – Virginia Mason medical center, Bastyr University, online surveys from National MS Society’s databases
  • Working with case manager from NMSS to address medical, financial, and other needs related to Nancy’s MS, and other issues
  • Be aware of fluctuating MS symptoms (heat sensitivity, fatigue, mood, incontinence, cognitive ability), and adapt schedule accordingly

Mobility

  • Transfer assistance from wheelchair
  • Transfer encouragement (emotional support)
  • Assist with home exercises – physical therapy, range of motion
  • Supplement exercise
    • Dance for PD – drove, helped with transfers, assisted with the exercises and demonstrated
    • MS Yoga at Swedish Medical Center Cherry Hill – drove, helped with transfers, assisted with adaptations, manual correcting body positions, prompting the next exercises, demonstrated, practiced exercises with Nancy at home
    • Seated exercise/MS-specific exercise/breathing videos – found them online, encouraged Nancy to do exercises, assisted with exercises

Household

  • Laundry
  • Dishes
  • Gathering and taking out trash
  • Decluttering wheelchair pathways
  • Picking up mail
  • Vacuuming, dusting bedroom and living area
  • Making bed
  • Changing sheets
  • Organizing medical supplies
  • Temperature control – keeping it manageable for heat sensitivity
  • Organizing pantry and fridge – ensuring accessibility

Shopping

  • Prepare grocery list
  • Meal planning
  • Run errands
  • Buy food and supplies
  • Purchasing incontinence supplies

Financial

  • Pay bills
  • Set-up autopay
  • Manage finances
  • Prepare fares for DART bus when
  • Meet with professionals – bank employees, attorneys, etc

Preparedness/Day to Day Changes

  • Heat sensitivity – have supplies ready – cold packs, cooling scarves, washcloths, cold drinks, etc.
  • Incontinence – have supplies ready – feminine pads, underwear, absorbent sheets, extra clothes, towels, know where nearby bathrooms are anytime Nancy is out of the house
  • Be aware of symptoms (heat sensitivity, fatigue, mood) and adjust plans accordingly

Despite not having a guide for this, and surprisingly not finding much help online, the consensus was that it was a thorough list, and that I did a good job. Not simple, but another unforeseen thing off the never-ending to-do list.

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Deborah
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Deborah

Amy, you did an excellent job. I had to do a similar list to account for being paid as my mother in law’s “helper girl” after she was approved for Medicaid. People don’t realize how many tasks people who are caregiving do for another person. As the new guidelines were developed for Medicaid that allowed family members to be paid for caring for people in home, they have to be able to have a care plan as well as document what care they are giving them. Your list is very comprehensive and well thought out. Another thing to remember is… Read more »

Goldie
Member

Wow! I’m impressed! I never would have imagined being compensated for taking care of my parents. I’m glad there is a way for this to happen. It can be a full time job. I see you took your mom to Dance for PD! I participated in the program here in Denver – for myself. I have PD. It’s an amazing program. When my parents went back on Medicaid, we had to provide documentation for every penny spent. As my dad occasionally wrote checks for cash, it was impossible to do. They were penalized by delaying their Medicaid for several weeks… Read more »

frogger16
Member
frogger16

Thanks for sharing your lists. Its amazing all that a family caregiver does!
Although caregivers obviously give from their big hearts with no expectations, I hope you will see some compensation.

John
Guest

This is a great list of care tasks for caregivers as it can be hard to remember everything and it can sometimes be overwhelming. This would make a great printable to hang up on the wall!

Margaret Moss
Guest
Margaret Moss

Thank you Amy. I am my mom’s full time live-in caregiver (for a few years) but am just now catching up with the documentation. Your list is excellent!