Wednesday, September 11, 2013

Back to reality, more or less.

On our way home from Hawaii, we spent some time visiting family and friends in Reno (our hometown) and Tahoe (where my cousin has a house). It was hectic as usual with musical beds, packing and re-packing, but we made it work. I'm always glad we do.

Bill and I got to spend some time with his old bandmates/two of our best friends and I was lucky enough to get to hang out, groupie style, while they played music and messed around. It was kind of my favorite thing ever (even though I fell asleep on the floor and woke up at 3 am and none of them were wearing shirts...).

The day after Bill flew home, I woke up at FOUR IN THE MORNING to meet friends and take the boys to the Great Reno Balloon Races. It was hard to drag myself out of bed (yet surprisingly easy to get the boys going...) but I'm so glad I rallied. Nothing like watching a field of hot air balloons come alive around you after seeing dawn patrol AND the sunrise. Kind of an epic experience.

I was a little surprised to find out on this trip that I'm not completely useless as a caregiver. I hesitate to even use that word since I am in no way, shape or form doing what a real caregiver must do. I'm still on the sidelines, watching my dad care for my mom (who is worse all the time), wishing I could do more but not actually having any earthly idea what that means. He is handling the day-to-day, and while it's not exactly his Oscar-winning role (nurturing doesn't seem to come super naturally for him), he's doing far more than any of us could imagine.

Have you spent time with someone who has Alzheimer's? It sucks. I mean, really. It's nothing against my mom, it's just the disease. My mom is gone and what we're left with is a sack of symptoms. You might totally disagree or think I'm a mean and horrible person but that's fine. I'm just being honest about my experience.

I spent a few hours alone with her while my dad went to a doctor's appointment and it gave me a small taste for just how difficult it must be for him day in and day out EVERY. SINGLE. DAY. After five minutes of sitting alone with my mom having coffee (without conversation), I was racking my brain trying to come up with something else we could do.

She couldn't talk.

She didn't understand anything I said.

She wasn't hungry.

She wouldn't let me take off her chipped nail polish (from the manicure my dad gave her...).

Things that seemed to bring her a little joy six months ago (watching the kids play, soft toys, her pets...) don't seem to be working anymore. She just wandered around the house (which she only sometimes knows is hers) or stared off into space or shrugged her shoulders and sighed uncomfortably. I tried showing her pictures, talking to her, turning on music, taking her outside...but nothing seemed to help her engage.

I finally decided we should take the dog for a LONG walk (something she used to love) but she didn't even enjoy that. She was confused about what we were doing, where we were going, and if we'd ever get home. She didn't understand why we had to do any of it.

Part of me wanted to yell, "Do you have any better ideas?!" While the other part just wanted to tell her the truth: "Because if we walk for an hour it means we'll be one hour closer to bedtime. And, if you get some exercise you might actually sleep through the night instead of waking up every 30 minutes asking to go home..."

Instead I just showed her the trees and talked about the dog and pointed out the houses where I used to babysit and where my best friend used to live and assured her that everything was going to be okay. "Don't worry, Mom. I know the way. We'll be there soon..." But when we got there, she was just as uneasy. Not asking for my dad like she sometimes does, just looking around and shrugging like, "Well, shit, this doesn't make sense either..."

Not long after we got home, my parents' neighbor came over to have a little pow wow with me (it takes a village...) which was such a blessing I kind of want to cry even thinking about it. She truly loves my parents and only wants what's best for them (both of them). She's a nurse and a caregiver and a straight shooter who sees far more first hand than my sister or I can from far away. We're so lucky to have her in our corner.

She talked to me about caregiving and about how when she had to take care of her dad, she had to go to therapy before she could allow herself to take charge. It's such a back-asswards situation, you know? Like parents and children switching roles. Where's the What to Expect book for aging parents?!

Anyway, she helped me understand that it's okay to have opinions and expectations and if I need to put my foot down now and then, it's actually OKAY. I'm not talking about coming in with a bulldozer and trying to take over (trust me). Just like, "Hey, Dad, if you could commit to going to a caregiver's support group once a week, that would really ease my mind." And then not taking no for an answer.

I really needed to hear it.

My dad got home when she was still at the house and we got to talking and found ourselves more or less on the same page. We decided to go check out a part time adult care program for my mom ("the club") so he could have a few hours to regroup each week and he agreed to follow up with the support group. It felt like a really big step but at a pace we were both comfortable with. I think we were ready for it to happen.

Which is sad in a way because it means that's how much the disease has progressed. We're not surprised, exactly - it's a progressive disease - just sad. It will only get worse. We all know this. Every week there is less and less to hold on to. I had to let go completely because she hasn't known me in a while. My mom is gone but my dad's wife is still around. A little bit. From time to time. I think he's beginning to accept that the parts that go are gone for good but it only makes him fight harder to keep what he has (which is really hard to watch). He's angry. And who can blame him, really? It's an awful disease.

Then... (like my leg warmers?!) And now! 

1 comment:

Jaime Sarrio said...

Thanks for staring this. My grandmother had Alzheimer's and it was heartbreaking to watch it progress. I can only imagine if it was my mom -- and of course we both worry someday it will be. Your dad's a trooper, and I'm glad he's getting support. I hope you're taking care of yourself, too!