It seems lately that everyone who twitters has their own nation of followers. Ryan Lochte, the USA Olympic swimmer calls his followers, the Lochte Nation. Appropriate. I follow several Purdue affiliates, and I suppose I am a member of the Purdue Nation. In fact I like that idea.
Recently, it occurred to me we need the Caregivers Nation. If you are a parent then you are a Caregiver. But, talking with woman my age, those of us with aging parents, I find we are more than just caregivers to our children. We have become the caregivers for our parents. It seems almost daily someone I know brings up the fact that they are finding themselves having to do more for their parents.
I can certainly relate to this dilemma. I recently lost my mother to dementia. But I spent six years prior to that taking on increasing responsibilities for her as her condition declined. When I hear someone talking about their parents, with that desperate tone to their voice, I feel compelled to help. Perhaps it is just to listen to them vent their frustrations. Maybe I can give some advice based on my past experience. Mostly, I want to tell them, this frustrating time will pass. Take the time now to enjoy what you can about your parent. Find things you can do together. Share their laughter. You will find it difficult to step up to the parental role for your parent and they will struggle to let you become their caregiver. Consequently, bring in as much help as you can. Be patient, your parent is frustrated and scared, just like you. Some days will seem to stretch on forever. Some days you will think, I can’t sit with my parent one more day and struggle to find something to discuss. On those days just be there, hold their hand. You can not be all things, but you can be their companion, their rock to hold on to as they flounder into the sea of dementia.
My mother gave many gifts as she fell to dementia. One was to look me directly in the eye and tell me she loved me. Something she had not really done before. It happened on one of those frustrating days when no matter what I said she just looked at me blankly. Then from nowhere, as if she had been struggling to say this for sometime but could not figure how to do it, she turned to me and said, “I love you, Posey.” I melted.
But, before she reached the point of only sitting in her room and staring into space, I tried to find something positive for us to concentrate on, through each of Mom’s stages. In the beginning, Mom and I went to lunch. I took her to get her hair and nails done. It was difficult getting Mom out of her home and to these places. She struggled to remember how to get in and out of the car. She didn’t recall how to put on her seat belt. I found it was like trying to move around with an infant, but more difficult because I couldn’t just pick her up and carry her. Besides, I wanted to leave Mom with some dignity. When she no longer felt comfortable leaving her home, we did puzzles, and watched day time TV. With each step down in Mom’s cognitive skills she and I adjusted to what we did for enjoyment. And, in the end, when Mom sometimes did not recognize me, we sat and held hands and watched the other residents move through her home.
Consequently, yes, I feel I have a kinship with the Caregiver Nation. We know who we are and we know that it is not an easy life. And, it is a life that many of us have no choice in whether we will join. Together we will get through this stage of life and, with any luck, move into the next. Whatever that may be.