Thursday, August 15, 2019

On the Other Side of the Wall: Walking the Tightrope of Care-giving

 As the older generation in a family begins to show real signs of aging, there is an invisible tightrope that appears. The glorious goal is to maintain balance. How can everyone get along, get on the same page, or get prepared for the inevitable difficulties that come the older we all get? Can we keep our balance as we help the elderly cross from one side to the other?
   My girls love watching Tales of Avonlea; a spin off TV series from the Anne of Green Gables movies. Each episode is woven around family life in a rural town on Prince Edward Island at the turn of the twentieth century. One word comes up repeatedly: duty. Doing ones's duty was a top value in everyday life way back in the early 1900's. There was a common idea of a required duty to one's family. One thing is for sure: if you are noticing your parents struggling as they age and especially as one of them shows signs of dementia you will start to wrestle with this idea of duty. What is your duty? Or even more simply put: what should you do? Are there tasks you are required to perform? Since our instructions for doing our duty are not exactly coming from a central community pulpit, we are on our own to determine what we feel our required actions are. The tricky part is that your perception of duty will be different from someone else's idea. How will you get across the tightrope together if you are tip-toeing with arms outstretched and someone else is on a unicycle?
   There is a slight difference between being required to take action and being responsible for taking action. The heart of these two words is the origin of the action. If I am doing what is required of me someone else is initiating my sense of duty. They are requiring it of me. However, if I am responsible  then I am the one taking that onto myself or I am initiating my own sense of responsibility. In parenting, I feel strongly what my responsibility is to my children. I am their mother. I do whatever is necessary to care for them. Everything I do is of my own volition. Nobody is telling me what I should do. Switch that now to looking after aging parents or grandparents. What do I feel responsible for? What do other family members feel responsible for?
Different Perspectives
   The day my grandmother came to live with us there were multiple perspectives on how she should be cared for with advanced Alzheimer's Disease. Our family lived the closest to my grandparents and saw on a weekly basis the difficulties they were facing. My mother was the only family member with experience in the medical field. Since my parents, especially my mother, possessed the strongest feelings of duty and responsibility for their parents, they were the ones to take the first steps onto the care-giving tightrope. Not everyone else thought caring for Grandma in our home was the best idea. They were definitely not offering up their own homes or time to help out. The tightrope was too risky, too impossible for them.
   One aspect was missing in the whole scenario of how to help Grandma as her Alzheimer's progressed. Communication was not a part of the equation between my parents and extended family. At one point I remember a family discussion at Christmas when the subject was brought up about how my grandparents were going to manage. I voiced my concern for Grandpa and how he was handling life while managing Grandma on his own. I was a teenager and adults in the room were surprised I cared. Maybe they didn't care so much themselves. They were busy. That was one of the only conversations we had with our extended family surrounding Grandma's care.
Slow Down and Talk it Out
   If you are planning on caring for someone in your home you cannot avoid huge problems with your extended family if you do not slow down and take time to talk it out with them. You can't just move forward, bring Grandma home with you, and expect everybody else to be on board and ready to help you in any way possible. Nobody likes to be cornered or pressured into care-giving. Sit down and explain what you think would be best for your parents. Listen to what other people think. Ask up front how much help everyone is willing to pitch in. If nobody wants to help, then you know you are on your own going into your life with Alzheimer's. Don't get angry at your extended family for not helping when they thought Grandma should go into a nursing home from day one.
Your Safety Net
   Life with Alzheimer's is beyond hard. It pushes you to a cliff and pokes you in the back to see if maybe you might just fall over the edge. Care-giving is the the tightrope from the edge of  your loved one's life extending to their death. If you step onto that tightrope, get the support you need. Your sense of duty and your feelings of responsibility won't be a strong enough safety net for you as the days extend into months and very possibly years. When you feel yourself slipping you don't want to look down expecting people to catch you when they never signed up for that in the first place. Your anger and disappointment won't make anyone more dutiful or responsible. Who will be your safety net? Make up your team. You need fill-in care-givers, cheerleaders, good listeners, and more. Or, take your chances and see who will catch you when you fall.
Photo by Leio McLaren (@leiomclaren) on Unsplash

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