Last week 3 really important things happened to our family. A new doctor at our family practice clinic told us we should not be allowing them to treat our mother's dementia, and he gave us the name of a neurologist he liked and trusted. He also made an appointment for an ultra-sound on mom's carotid arteries. He asked them to make the appointment that same day, after hours, because he heard swishing that worried him. No one had ever listened to her neck before, not when I was there. (She has 50% occlusion on both sides. At age 85, we're not sure it's worth it to risk stroke by trying to clean out the blockage.) This was on Wednesday.
Thursday morning at 9:00 I called the neurologist's office. They could see her at 1:00 that afternoon. This is one of the best neurologists in this part of the state, and she accepts Medicare patients, doesn't charge large co-payments, and doesn't stint on care. She also seemed to be aware of the cost of prescription co-pays (it will be $170 a month), and gave us 2 months supply of samples for both of mom's new medications. That's a life-saver - we had an A/C breakdown and a septic system issue this summer, and money is tight.
Friday morning we had a home visit appointment with a woman from Hays County HHS.
The HHS thing? After dad died last September, we realized how far mom had deteriorated. He covered for her, and she's very good at saying right-sounding things, and laughing sweetly. We were pretty shocked.
My sister Callie and I work part-time so we can split mom-care, and my other sister Joan carries the brunt of the family finances. We're a 6-woman family unit - the Velcro Sisters, my outstanding mid-teen nieces, and mom. We live in a wonderful, large home, with an attached apartment for mom and dad. Since dad died, we had to move mom into a big room, a former office in the main part of the house - attached was not close enough!
Even with 2 of us splitting the mom-care load, we started feeling pretty burned out after 6 months. Losing dad rocked her badly, and she needs constant attention. It's a 24-hour a day job, and it's labor intensive. We decided to look into getting respite care.
We wanted someone to come in 3 mornings a week, maybe help with showering and hair washing a couple of times, and fixing lunch 3 times. You see, even if one of us is formally in charge, the other needs to be close at hand. Mom is the "source" of my OCD-ness, and hers is really out there in the open right now. Aricept improves her function and her liveliness, but it also strengthens that compulsiveness. You have to have someone to call on when mom has really wound herself tight - there's no excuse for being mean to her, so we make sure we're never pushed to that edge. 3 mornings a week off sounded like heaven.
We did the paperwork, and had one home visit where they met and talked to mom. 6 weeks after the visit, a second visit was arranged. We expected to be told whether or not we could get 3 days a week (we feared it would be less).
Here's what we got. We're going to be paid for being caregivers - 24 hours a week, probably 9.50 an hour. I can't begin to tell you how much this will help us. Food prices have gone up so much, 100+ temps are kicking the electricity bills, and there's no fat in the budget at all.
We'll get respite care as well. They've ordered grab bars for the shower, and a moveable shower chair. We'll have an RN come in twice a month to monitor her physical health. Her medication co-pays will be covered. They will provide any and all durable medical goods - walkers, wheelchairs, a hospital bed, whatever we need over time. They'll evaluate her every year, and we'll be eligible for up to 40 hours a week in payments for caretaking. They will do whatever it takes to make it possible for us to keep her at home. I'm tearing up as I write this.
We're not doing this alone. The people who have met with us are so kind, so involved, so supportive. They're the ones who are saying "You're underestimating how difficult this is, and how stressful it is. You need help in order to do it." Dona, the woman who was here Friday gave me her card and said "I'm your go-to person. Call me about anything and everything. If we can't help, we'll find someone who can."
We've barely dared to talk about what will happen as mom gets worse. We know our mom. She's painfully shy, and has always been happiest at home. We know that having to put her in a nursing home will be a death sentence. All the sibs have made a commitment to keeping her with us. It seems like the least we can do. She gave birth to and cared for 7 children. We were her focus for the best years of her life. She wasn't perfect, she did some really hurtful things sometimes. She didn't have the hours in a day to be there for each individual child, not when we were born in an 8 1/2 year time span.
We cared for each other, and it created a powerful bond between us. We all knew how hard she was working, and we all owe her/them so much - the music, the art, the books, the travel, the love of language and words.
(Someday I'll write about traveling the country with 7 kids under age 10, the first of many trips to National Parks, DC, and NYC. Just take a second and think about toddlers in the Smithsonian, on the Staten Island Ferry, watching Old Faithful.)
We have to be there for her, no matter how tiring or inconvenient. How could we not? She gave us everything she had to give.
We didn't dare talk about how we'd do this, and we didn't know there was help available - not this kind of help. This is the dreaded government run health care monster we're supposed to fear - we ask for what we think we need, and they provide what they know we need.
This is what I'm supposed to fear? I can't stop saying thank you, and I can't stop being grateful, and I can't stop yelling at the teabaggers on TV. I want them to come to my house, and see how life can be when government helps you to do your best.