Beth stood in the aisle at the drug store, looking at rows and rows of adult diapers. What kind to get? “Who knew there were so many varieties?” she said to no one in particular. Immediately, she was transported back 30 years, listening to her husband describe the identical experience. He had just returned from the store carrying three different packages of infant diapers and wearing a baffled expression.“I didn’t know what kind to get. I had no idea there were so many varieties.” Here she was, all these years later, trying to figure out which kind to buy for her dad.
The second R in care partner is for roles, because yours are changing.
And staying the same.
At the same time.
Chances are, you have a specific role with your loved one. You are the sister, the daughter, the friend, the son, the husband or the wife. You are comfortable in this role, and although you may seldom think about it, your role has evolved over the years. Being the son isn't the same as it was when you were five, or even when you were twenty-five. You aren't the same person as a wife as you were on your first anniversary. Without noticing it, people grow and change constantly and our roles evolve with us.
Your role as care partner may have been sudden. An event such as a stroke, a hospitalization or any other kind of sudden decline thrusts you into the position of having responsibility for another person and making difficult decisions about their care and their future.
Even if the changes happened slowly, there was probably a day when it struck you. Like the frog in the pot of slowly heating water, we can deal with multiple changes until it suddenly strikes us that change has occurred and it's permanent.
I remember the day I came home from work early because of a call from a visiting nurse. My husband and I had been through nine months of changes and hospitalizations. His health was steadily declining. Because he made most of the decisions about his care, got himself to appointments and looked after his own medications, I didn't consider myself a caregiver. I was a supportive wife. When I descended the stairs to the basement and saw him sitting in his recliner chair with pills scattered all over the carpet around him, I knew in that moment my role had changed. I was still a supportive wife, but I also needed to care for him and make decisions. My heart dropped and I was afraid.
There is no magic formula for finding a comfortable place in your new dual role. As is often the case, every person and situation is different, and you need to find your own way. Here are a few suggestions that might help.
1) You are going to experience a myriad of emotions. Fear, anger, frustration and especially grief may overwhelm you. You may feel immeasurably sad as you realize life will never be the same again. This is normal. Find someone to talk to. A counsellor with experience in this kind of situation would be ideal, but a pastor or trusted friend could help, too.
2) Find ways to connect which are outside of your care partner role. Don't allow everything to become about the disease. One daughter plays cribbage with her mother as they always used to. A wife has dinner in the dining room with her husband every evening. A family brings in Mom's favourite food and eats together on Mother's Day. A granddaughter brings her baby in to charm Grandma. Look for connections that are both normal and fun.
3) Isolation is often a problem. Choose a few trusted friends and explain to them the changes in your lives and how you are dealing with them. Then consider inviting one or two over to visit. If a meal is too much, have coffee together, but include your loved one. Don't allow your world to shrink any more than is necessary.
4) Take care of yourself. (Don't I always say this?) The energy involved in figuring out your role and living it out can take a toll. Make sure you are nourishing yourself, both with rest and with stimulation, outside of your role as care partner. You will be able to carry on.
5) Write things down. It always helps me to keep lists. What works and what doesn't, ideas to try and connections with others to make. Lists are helpful to keep you focused in this scattered journey.
One of the difficulties of taking on the role of care partner to someone you love, is that you no sooner get it figured out and it changes again. Your original role (wife, son, sister etc.) is the same, but it will manifest differently as your new role of care partner evolves. Both roles are important, and feed into each other.
You'll know you are making progress when you can celebrate both.
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