If I think of family plus caregiving, it always equals a stressful situation no matter how functional a family might be. Throw in some poor family dynamics, established sibling patterns, control issues usually involving physical, emotional, legal and financial concerns; mix in the overall lack of planning and variety of personal regarding; sprinkle on top some exhaustion and emotionality; and you have a recipe for disaster: WrestleMania Family Caregivers Takedown!
When Michael TS Lindenmayer of Caregiver Relief Fund suggested the "WrestleMania" title, I laughed. And then I stopped laughing when I thought of my own story of caregiving alongside my sister in the case of our grandmother.
My sister and I definitely had some difficult and strained moments while providing care for our beloved grandmother, who was more than 3,000 miles away. In fact, we had a blowup on a small commuter plane, which led to us deserting each other in the airport upon landing. What I learned was that discord in caregiving was rooted in our own sibling relationships from childhood. My sister and I have very different personalities. Furthermore, we had never really worked in tandem on anything. I was married to a doctor and my sister is an attorney married to an attorney. Our grandmother's caregiving was divided down that line: I was medical and my sister was legal. We each had two children and worked and lived on the East Coast while our grandmother lived in sunny California.
Our grandmother, Dee, moved to California from Detroit when she was 80 years old! She was youthful and full of life. She found a job, volunteered, drove around to familiarize herself with the area and made many new friends. She led a full and healthy life with no major medical problems.
Until the day she fell and broke her hip. As with many older adults, this was the first domino in her deterioration. Ironically, it happened while my sister and I were flying and mid-air returning from a visit with her. She was 93 at the time and had recently stopped driving. During this particular visit, we had interviewed and hired a caregiver to come in three times a week to drive her to medical appointments, grocery shopping and to see friends.
When we landed and I called my grandmother to let her know, I was shocked to hear her caregiver recount the story of how she fell. My heart was broken. As I was medical, I quickly realized that this was the beginning of a well-defined downward spiral. Broken hip, rehab, disorientation, etc. -- this was an all-too familiar story. From experience with my own mother-in-law and others, I knew that this caregiver who accompanied her to the hospital, then to rehab and finally, home again, was to be my grandmother's new family. Again, my sister and I divided the duties. She paid the caregiver weekly and I did all of the groundwork and interfacing. To me, writing the check was the easy part. I felt the burden of long-distance caregiving and began to resent my sister for what I perceived as her lack of involvement.
Because we were sisters, I wanted something that felt 50/50. This arrangement did not feel that way. Perhaps it was our old (and normal) sibling rivalry rearing its ugly head? Lack of involvement and emotionality is my sister's personality while I am the more emotional and effusive one. We were in our already well-established patterns. It is only recently that I have come to understand that. My sister and I came together when necessary for decision-making and then reverted back to our normal pattern for everyday life.
The idea of family was also redefined in this process. My grandmother lived in a "board and care" with a loving group of warm, immigrant caregivers who were happy in their jobs, thus creating a warm and loving home. It is a residential home that has been modified to accommodate wheelchairs, walkers, etc. While my grandmother lived there, there were about six residents with varying mental and physical abilities. She loved it! She sat in the kitchen during meals and served as the sous chef and gave cooking tips to the staff! They became her family as they took care of her, and she loved them for it. And my sister and I took a deep breath in unison.
We tried to visit as much as possible, but with kids in tow, time changes, and indirect flights, it was difficult. We sisters were stressed each time we met in Phoenix. For that short flight into Palm Springs, we would be tense, on edge, emotional and exhausted, trying to juggle our individual and shared responsibilities. One trip, we had a big fight over taking my grandmother shopping and out to eat. My sister is more cautious and was worried about taking responsibility for our grandmother's caretaking on our own by putting her in our rental car and going to the mall. I understood that but was not uncomfortable. We both knew of my grandmother's passion for shopping. I convinced my sister finally by stating that I took full responsibility if she died at Macy's!
Here are some common-sense tips straight from the Caregiver Relief Fund, which may help:
1) Talk, Talk, Talk -- it's a no-brainer! Say how you feel and why; otherwise, there will be even greater misunderstandings.
2) Listen, Listen, Listen -- if your sibling (or other family member) speaks, be certain to listen without judging. Work to gain consensus.
3) Everyone is allowed to have opinions but must come together for the common good of the patient.
4) Ask for help if you need it, and don't judge or criticize when it is offered -- whatever the form.
And remember that old patterns are difficult to break. If you are not accustomed to working in tandem with siblings or family members, remember that each is as valid as you. Each sibling has a different relationship with the same parent or grandparent. Recognize this important fact and you will will avoid much anguish later.
Its difficult to caregive and deal with sibling relationships at the same time. Hopefully, reading and sharing this article can help some siblings come together for the sake of their parent or other loved one.