New Marching Orders

After the last, VERY DISAPPOINTING visit with M’s neurologist (actually as a part of it) he suggested I meet with a memory care social worker they have working as a part of their practice.

Where has this person been all my life?!?

Meeting with this social worker was the best visit with a health care person I’ve ever had. Hands down. She gave me fabulous advice on dealing with M, which is great. But she also validated everything I told her and everything we’ve been going through – which was SO refreshing.

I haven’t had this problem with M’s neurologist, but in the 18 months of doctor’s appointments and testing leading up to M’s diagnosis, all my fears about his condition were dismissed by the physicians. We were constantly told “you’re much too young to have memory problems” as though that would solve everything and not one of them believed his condition was as bad as I was telling them – until the results of all the testing came in. Then they were stunned.

M’s neurologist is very kind and tries to be helpful, but I can feel the clock ticking while we’re sitting in his office. It’s obvious he only has a limited amount of time to spend with us and, once that time is up, we’re done. It doesn’t matter if our issues have been resolved or not.

But the social worker I met with was FANTASTIC! Here’s some of the advice she gave me:

• When M asks me about “the other girl,” just tell him that I sent her home or it was time for her to leave. Don’t try to convince him that she is me – go along with what he is seeing and his brain is telling him.
• When M gets angry and is lashing out, agree with what has gotten him angry – yes, this place IS terrible or yes, we need to go home right now – and then try to change the subject. I’ve used both of these ideas and they’ve work amazingly well.
• If he gets violent and I’m scared for my safety, call 911 and request an EMT and transport to a hospital. He’ll be placed under psychiatric care and started on the anti-anxiety and calming medications he needs.
• Keep my cell phone with me at all times! I’m the worst to keep my cell phone in my purse and not look at it when I’m at home. I’m having to make a concerted effort to have it with me, like my kids do.
• The home care visits our insurance pays for are for skilled care (skilled nursing, physical therapy, occupational therapy, speech therapy). They don’t stay and offer supervision, which is what we’re looking for. Agencies that offer in-home supervision (wait for it) aren’t covered by insurance. Sigh.
• There are grants out there for care giver respite. I can actually get a little bit of money to get a break.

While I was there, she emailed an elder-care attorney to ask if M might qualify for Medicare earlier because of his diagnosis. She also scheduled an appointment for M with a geriatric psychiatrist to get him on the regime of anti-anxiety medications I wanted the neurologist to start.

It hasn’t solved all our problems, by any stretch of the imagination, but I left her office feeling as though a tremendous weight had been lifted. For once, I have hope.