BUILDING A CAREGIVER TEAM
There are times when those afflicted with amyloidosis need assistance — a caregiver. In some instances, such as a stem cell transplant (SCT), the treatment is so extensive that securing a caregiver is required before treatment commences. It is for these situations that we thought we’d share some thoughts about how to build a caregiver team.
CONSIDER YOUR NEEDS
The role of a caregiver can be intensive and draining. In particular, SCTs performed on an outpatient basis, while deemed to be good for patients, shift a significant amount of work to the caregiver (see https://mm713.org/transplant-inpatient-vs-outpatient/).
Begin by itemizing the different aspects surrounding your caregiver roles, such as the following:
- Expected duration of treatment
- Meals (e.g., cooking, shopping)
- Basic medical monitoring and care (e.g., drug administration and tracking, food and liquid intake tracking, vitals monitoring)
- Administration (e.g., insurance)
- Care for kids and/or pets
- House sitting
WHO IS AVAILABLE TO HELP
Family members are often the first call to offer caregiver support. Neighbors and good friends often stand at the ready to help as well. Embrace and accept their help.
HOW TO ASSEMBLE THE TEAM
Particularly if the expected duration is long, caregivers need breaks. The caregiving process itself can be intensive and draining, and they have their own daily needs to attend to as well.
It is not uncommon to have multiple sequenced (one after another) caregivers during a four to six-week SCT treatment. However, another way to think about assembling your caregiver team is to line them up to work in parallel and together. You may be able to extend the duration of each caregiver if their tasks are narrower in scope. In addition, assign tasks consistent with each caregiver’s skills.
In my situation, I needed to prepare for having a SCT on an outpatient basis. I was extraordinarily fortunate to have four family members live with me throughout the entire treatment process. We figured it would be most productive to allocate responsibilities based on skills and that we would build in breaks from the intensity. Here’s how my caregiver team looked:
- My Dad. He was in charge of room and transportation. We needed a place to stay for five people for up to six weeks (we found a fantastic transplant-friendly house through HomeAway near the Mayo Clinic in Rochester). We also needed transportation to get all of us to/from Rochester, and determine how best to get around during our stay (a combination of fly and drive so that we had a car). Four of us were coming from the Washington D.C. area, and one from the Los Angeles area. Lots of logistics to consider.
- My Mom. With her strong organizational skills and squeamishness towards all things medical, she was in charge of all things administrative and insurance-related. She was in charge of making the list of things we needed to bring or buy to set up the household and kitchen. She brought favorite recipes so we could more easily muster grocery lists. In addition, she would collect receipts, track mileage, and made sure there was good coordination between our insurance provider and Mayo Clinic. This is a procedure that requires advance authorization and is expensive, so attending to the financial aspect is important.
- My Brother. He is three years younger than me (20, and I was 23), studying pre-med with a keen interest in becoming a physician, in addition to a strong interest in sports and nutrition. His role was three-fold: exercise for all of us (myself included), nutrition, and assist in monitoring my vitals and food/liquid intake. Our rental house neighborhood was flat and had sidewalks, offering an easy way for all of us to get some fresh air even if just for 15 minutes at a time. We also found a local fitness club that we could join for a month-to-month low cost, offering another way for the caregivers to rotate to work up a sweat and work off stress.
- My Aunt. Being an oncology pharmacist, she was the obvious pick to administer my drugs, which were extensive, and monitor my vitals and food/liquid intake. In addition to the required drugs, there was also the as-needed drugs for pain, nausea, fever, etc. that she would collaborate with the Mayo medical team. Her expertise was priceless, particularly during those days when things were most difficult.
For our two pups, we found an extraordinarily loving “free range” place that lets the pups play with other like-sized pups all day, and then boards them at night. It gave us great peace of mind knowing they weren’t caged all day and night for a month. In addition, we arranged for them to send us weekly pictures, which quickly became something to look forward to.
Once we began the SCT process, I worried about nothing other than myself. I left it to my caregiver team to do all of the worrying, errands, purchasing, preparing, communicating with Mayo, etc. I loved having my family around, as I found it extraordinarily comforting and appreciated their attempts at distracting (for example, we must have played Monopoly 20 times).
BE CREATIVE AND PLAN AHEAD
While everyone has a different situation, my biggest suggestion is to be creative, mindful of who and how many caregivers you assemble for your team, and don’t underestimate all that is required of your caregiver(s). Think about your needs, as well as their needs, expertise, and time availability to commit. Listen to any guidance provided by your healthcare team. There is no question there is a lot to plan for, but the more thought you put into it will no doubt pay off in your experience. After all, while you are going through treatment this will be the last thing you are interested in or able to focus on. Advance planning is critical.