It Really Does Take a Village
Written by Barbara Casey
THIS IS A MARATHON, NOT A SPRINT. The average length of time that a caregiver cares for a loved one is four to seven years. Most caregivers go into this experience thinking it will be for a couple of years at best.
This is more like a marathon, not a sprint. I began taking care of my Dad remotely about three years before I finally moved him closer to me. Most of us set off down the path of caregiving without much thought. “Of course, I will take care of my Dad. He was a wonderful father and gave so much to me and to his community. He deserves nothing but the best” I mused. Without thinking about the long-term consequences of that decision, I moved him closer to me, his two sons, his niece and nephew. Surely being closer to all of us would be a good thing. He would get to see them more often because they aren’t as far away.
I knew that I would be doing the lion’s share of overseeing his care, but I also assumed that my siblings would pitch in and help with this monumental job of taking care of Dad. One of my brothers set up a private Facebook group which allows us to post status updates and videos on how Dad is doing, keeping all of us (family) in the loop. I regularly update it and it is a better way of communicating with so many interested parties than to be bombarded with phone calls.
HOWEVER, I believe the Facebook group has enabled my two siblings to become complacent. They see how well Dad is doing and are able to keep up to date on his progress remotely. Since Dad cannot communicate on the phone anymore, they don’t call. They need to visit him in person. To really see how Dad is doing, they need to visit for a few days, not a few hours a couple of times a year. Every day can be different with Dementia. Dad could be pretty verbal for a short time one day and then be unable to communicate the rest of the day. Seeing him for a few hours doesn’t give you a true sense of who he is anymore.
SO NOW WHAT? If you are not the direct caregiver because you live out of town, that does NOT let you off the hook of helping. What it means is you can help in other ways. You could call the direct caregiver regularly and ask how you can help. You could send notes thanking them for taking care of Dad and telling them how much you appreciate it. You can send short notes to your father letting him know that you are thinking of him (since he cannot speak on the phone). Send a meal for the caregiver or a gift certificate to a spa or restaurant.
Caregiving is a sacrifice for the caregivers and their family – emotionally, financially and physically.
My Dad is in an assisted living facility so they take care of his basic needs. But, there is much more to be done. I am normally there six to seven days a week, hours at a time. I am his advocate. I make him feel connected and feel like he is communicating (even though he does not make any sense). I sing and dance with him, make sure he’s being taken care of by the facility, walk with him and do stretching exercises with him. These are just the basics. Then there are all of the doctor appointments that can sometimes take half a day. Sometimes, my husband has to help get him to the appointments, so now both of us are helping. My list of caregiving activities is longer than I have room to write in this article.
IT TAKES A VILLAGE. Let me be brutally honest. I need a week off. I need a few days off now and again. Not once a year, but periodically. I need my siblings to step it up and participate in the care of our father. Last night, I attended a session on caregiving sponsored by the facility where my Dad lives. The examples they gave talked about how one sibling did the majority of care giving because they were local but the others alternated visiting every few weeks to a month to give that primary caregiver a break. A break. What a novel concept. It takes the facility and me and all the people involved to help someone who can no longer help themselves.
This takes a family village. I want my village to wake up to the reality of what is at stake. This family crisis can either make our relationship enriched and stronger or it can tear it apart.
This article was originally posted on the blog www.thelastjourney.net in February 2017.
My name is Barbara Casey and, while I am the youngest of three children, I was deemed the caregiver for my 90-year-old father. I relocated him to Pennsylvania to be closer to me in August of 2015 and immediately started writing a blog to chronicle my experience and to help others avoid some of my stumbles along the way. I hope through my words you can find support, learn from my mistakes, maybe laugh a bit at the absurdity of it all, and realize that there are others out there walking the same path. After all, there is safety in numbers.