Caregiving is frustrating more often than it is ever a win or a loss. Under pressure distinctions blur between behavior associated with chronic illness/disability and anything else.
Plans with time tables can be one way tickets to caregiver psychoanalysis. More often than not, I end up empathizing with Wile E. Coyote's endless quest to try but never succeed.
Telling our story, I notice I tend to share the highlights. Monotonous entries of exasperation would be dull; however, enduring frustration may be the bottom line to caregiving.
I understand your frustration because I cared for my paraplegic husband for over a decade. Though he is now dead, while I was caring for him, my mind was always so busy trying to find ways to make life easier for him. Going out was always challenging. Setting up the house handicap accessible was really tough. Raising a daughter whle caregiving was extremely difficult. Being diagnosed with MS during this time was the pits. All in all, you do an excellent job at caring for your wife Patti. My prayer is that if one day I can no longer be in charge of my own care, that my husband Gary will be as thoughtful as you are.
ReplyDeletecare giving is very hard and people who have not done it cannot relate to those that have done it. I've done it not on the level you do with your wife but did caregive with my physically disabled daughter who also had a lot of mental health issues. It was exhausting some days.
ReplyDeletebetty
As I am one of those who have not had to care for someone to the length and degree you have with your wife, I do empathize with those who do. My professional stance, as a teacher, is to not get too involved with any one student and their family. However, each year, I do get involved with one needy family, and it does get personal. I can't be involved beyond the classroom for every kid who passes through my class, but sometimes I do step out and into the lives of another family, and usually their needs are more than physical/mental disabilities. Add to their lot financial strain, several kids with medical needs, single parent family, and you have a recipe for what borders on neglect. I wonder how do people who have no financial help (no job, no insurance, they rent their home) get by when their burdens are so great? It seems to be a catch-22. They can't get a job because they have the kids to take care of, and medicaid provides only so much, then there's the paperwork (you even illustrated that very well in one of your entries); they can get foodstamps for so long, they can get health care, but if they don't have a car that runs, they can't get around to make all the appointments.
ReplyDeleteYou have the means and the intelligence to care for your wife, and you do a great service for her in loving her so much. How do people who are poor and not so intelligent deal with these issues? It isn't very nice and it isn't very pretty for them. It is sad when I think about some of the home/family situations our students have to return to at the end of the day.
It's good of you to share with others who also deal with the same problems, and in this way, enlighten us all. Any one of us, in the blink of an eye, could be sitting in your wife's chair, or caring for one who is. Your writing about the frustrations and exasperations is as important a contribution as the care you provide you wife each day. God Bless you, daddyleer!