Caregiving

I'm not great at being very honest.  My whole adult life, I've lived by the idea that it's better to look good than to feel good.  By looking good, I mean, get up, shower and put on real clothes.  I always hoped that if I felt pulled together, I would be able to keep it together. 

Well, it worked.  For a long time, it worked.

For the past year and a half, it hasn't worked as well I always thought it would.  The truth is, we are all struggling.  Struggling in ways I haven't even admitted to myself, let alone a world of unknown people who still find this blog amusing to read.

I get a lot of people asking me to write a book.  I love to write but trying to decide what to write about, how to format it, has been a huge stumbling block.  There are many topics to choose from.  I'm like the Jack of all Trades when it comes to dysfunction and stumbling through life.

Lately, when we go to appointments in Utah and a doctor asks how we are coping, I take every opportunity to tell them we aren't.  Sometimes, they bring in a Social Worker and other times, they offer their own wisdom.  It is always, ALWAYS, some version of, never deviating from:

You need to manage your stress better.... (To which I reply...DUH, except I say it inside my head)
Just treat yourself, go shopping, get some new shoes and a massage...(That feels great for all of 5 minutes until the reality of spending money sinks in and I circle back to stress)
Take a vacation...(Okay, let's just think that through for a hot minute...I'm a single, self employed mom, if I'm not working, I'm not making money.)
You work too much.  12 hour work days are not a badge of honor you know...(No kidding!)

MY PERSONAL FAVORITE...Have you thought about trying YOGA? (NO!! Hell NO!)

This is where I feel compelled to say things like, "They mean well." "They are just trying to help"

But honestly, the medical profession has failed miserably!  It's like they don't even try!  They have no clue how handle exhausted moms and dads, suffering children, chronic, fatal or life threatening diseases.  They have lost respect for mothers, caregivers and the patients themselves.  They pat us on the head and patronize the whining out of us and we leave with our load of hurt and some added shame and guilt; that we can't just be happy the kids are still alive. 

So, we stumble back to our homes, afraid to let our hurt be seen and write on our hearts, a Haiku with the words AT LEAST; a punishing form of poetic justice. 

At least...they don't look sick.
At least...they aren't in the hospital.
At least...they don't have cancer.

Yes, well meaning phrases we even tell ourselves. 
Not helpful...minimizing the suffering does the least to help a situation such as this.

So, I, like...just about everyone, don't know what the answer is but it has been such a discouraging year that I have been spending every spare moment, when I should be sleeping, researching about how to support a caregiver. 

Ultimately, I will turn this research into a book that will educate the medical community as well as the general public about living and caring for people with fatal and life threatening illnesses.   I will talk about all the ugly things that come with the territory of caregiving; compassion fatigue, depression, anxiety, addiction, mental illness, stress, complex PTSD, illness in the caregiver and concrete ways to actually be helpful.  Nowhere in my book will I mention Yoga, shopping, chocolate, or vacations as a viable form of respite and I will not be including the word AT or LEAST.

I'm not sure I've ever felt so passionate about a subject.  I think I will begin to use this blog as fodder for my thoughts on this topic specifically...We'll see...