"So, who helps you out in the home?" The doctor asks this question and looks at me expectantly.
It's a question I'm used to hearing. It's one I get asked at every appointment, every in home visit, and at least every 12 seconds when we stay in the hospital. I always answer the same way.
"My husband helps when he's home. My son pitches in and does well above and beyond his call of duty and when my parents stay they help out around the house with odds and ends." I end with a bright smile but I know what's coming.
"But what about nursing care? Who comes for that? Do you have any help? This is an exhausting and demanding job. Your daughter is 24/7 care. Plus I see in the records your son has disabilities as well. You must be so tired and worn out. Are you taking care of yourself?" Looks of pity and compassion often follow. Sometimes I get a hug or a pat on the arm. Then they wait for my answers on why my magic wand hasn't poofed me up a service staff.
In my state (Virginia) there are waivers. Cary Lynn is qualified for nursing. The problem is we are at the bottom of the barrel and on a wait list so long it is a very real fact that my child may pass away before we receive help that may actually help us. Pay for non skilled attendant help is $9.22 an hour. No overtime, no benefits, and we are not allowed to add any additional income. Turnover is high and retaining people is difficult. The attendant cannot give medicines, drive, and other various restrictions. Pay for skilled nursing is still low and you are at the mercy of an agency to find (or pretend to find) you a nurse. I'm on the waitlist as we speak for six agencies. It would have been eight but one agency told me that they don't work with her waiver because there is no money involved for them and the other agency told me I would be better off putting her someplace since we would be lucky to find any help where we lived.
I wish I could say because I live in the sticks of Virginia this is a unique problem and if I moved to a more populated location it would be resolved. But it's not. True, where I live doesn't make things easy but trying to make a living off of $9.22 an hour with no benefits is hard. Turnover is high and interest is low. This is a problem that is happening everywhere.
We have had help from the medical community and Noah's Children. They call agencies for us and advocate. Two hospitals have put in nursing orders and called my list. They let me know they are fighting too. I'm grateful, but not hopeful. I gave up hope in finding help years ago. It's easier not to become upset and rattled when you stop hoping.
Not having what you need can impact other ways of life. I'm not able to work anymore, not because I don't want to. I miss adults. I had a fantastic job and loved what I did. We make it work. I also miss dates and alone time with my husband. This weekend was supposed to be a get away for two. Guess who ended up needing to see a gi/motility specialist? I think my last date night with my husband was about two years ago. I miss dressing up and going out. I also don't always go get the medical care I need. Things change.
I'm also not writing this so everyone feels sorry for us. That's not what I want at all. Nor am I this amazing super human who has lived off of bad hospital coffee for years. I don't want pity. What I want is change. If things don't change people like my daughter will continue to be treated like a sin and an abomination from the dark ages to be carted off to an institution.
My kids are vibrant. They have fought and will continue to fight. We've had a few setbacks and scares recently that we are still processing. But part of what we have learned from this is that we are going to have to fight harder for changes and for my children's rights. Letters have been sent, calls have been made, and we are ready to speak out more loudly than ever. Change doesn't happen with a magic wave of a wand. It takes time, hard work, and lots of pushing. I won't stop because the stakes are too high and loosing isn't an option.