Birthday, ambulance

MOM'S BIRTHDAY
(If I'm not going to write very often, I might as well use a lot of pictures.)

We took over the dining room Thursday last week and celebrated Mom's 82nd birthday. We brought fudge-lined chocolate cake with white frosting, wine, a giant orchid, dark-chocolate-covered almonds, and high-end peanut butter cups. We sang  "Happy Birthday" four times, as Mrs A., who has no memory, kept saying "Aren't we going to sing 'Happy Birthday'?" So we sang it again and again. And even the grumpy woman, who never smiles, wheeled her chair over and tugged on Mom's shoulder to wish her a happy birthday. Mom, of course, didn't notice, but it was touching nonetheless.

"This is the best birthday I've ever had," Mom said, but I doubt she can remember any of her other birthdays.

Still, we had fun.

So, Julie and I are up north now, a five-day escape. It does seem like we get away a lot, but what we're doing is making the most of my three weeks of vacation. And boy am I ready to retire.

So wouldn't you know, on Monday night, a day after we got up here, I get a call from the nurse. Mom has fallen, and while nothing is broken, she won't stand again, even with help. She had been using her walker, but it didn't keep her on her feet. One of the aides said she had been outside with her earlier, and she nearly fell then, and I noticed, on Sunday, that her legs shook more than ever as she took her little stutter-steps, and she would sometimes just freeze in place, unable to move.

The nurse wanted her to go to the ER, which I thought extreme, but I said OK, and she went. Then I wondered, should I drive down, three or four hours? It might all be over by the time I got there -- or maybe she'd be there all night, afraid and full of worry. I held tight, and finally got a call from the ER. She had an infection, and was wearing one too many medical patches, which exacerbated things. She was home by 10:30.

I called her in the morning.

"Mom, I'm sorry I couldn't get there to help out."

"Oh, that's OK. There were a lot of people."

The nurse relayed this: As mom got into the ambulance, she looked at the attendants and said, "My,  aren't they handsome."

Who knows what goes on in her head.

Up North

Up North

A quandary

The greatest state

Mom had a couple of bad days last week. She had to have an aide dial the phone for her, and her voice was frail and fearful. She couldn't do normal things without help -- go to the bathroom, change her clothes. The nurse said she even would ask an aide making a call for her, "What will I say? What should I say?" The nurse said she was afraid Mom would fall, even with her walker.

I asked the nurse if Mom was a candidate to be moved to the 24-nursing care wing, and she said, "We'll just take it one day at a time."

When I saw Mom, she was jittery, fearful, and not well. She seemed afraid she was dying, or about to be moved. I helped her use the bathroom, and when we came out, she said, "I wonder what will happen" -- to her, her future, her life.

The nurse said Mom had been put on some new meds, and thought this decline might be caused by a reaction. She was trying to reach her doctor to ask if she could suspend the meds.

So, Friday, I was in a quandary. Julie and I had set side the weekend to stay with some friends up north. What if she died and I wasn't there? Or needed extraordinary help in some way? How could I help even if I were here? What if she felt better in the morning and I hadn't gone?

I didn't think she'd die. And I didn't think I could help. Her need is endless, my time is finite, and I went. I kept my phone with me and turned on -- boating, swimming, talking, eating, drinking. The phone never rang.

I went to see her tonight. She was fine. Better. Cogent. She went to the bathroom without help. Had they taken her off the meds? I'll call the nurse tomorrow to find out.

See me in the chair at left

In a nutshell

How it started

How it ended

This is my bike trip in a nutshell -- 6 riding days, 340 miles. There will be a day when I'm too old for this. Right now, though, despite the pain, the wind, the hills, I'm ready to go again.

Last weekend, not to be only about biking, I did the MS Ride -- and thank you to all those who contributed!-- which, designed to be 75 miles x 2, was shortened to about 60 the second day on account of the heat. I must have looked my age, because at almost every single rest stop, one of the staff people would come up to me and say, "How do you feel?"

"Fine," I would say.

But I wanted to ask, Well, how do I look? I sweat big-time, and my face glows bright red, and I must have looked tapped out the whole second day.

Mom's big week -- the best week she's had in a couple years, probably -- has left her bereft. As Sister S has so concisely put it, "Was it worth it?" S says:

"After the high of FF, Mom seems almost more miserable than ever. She does not understand how she ended up there, at (her place), and desperately wants to "go home," where Sister L and I took turns sleeping with her, helping her make it to the bathroom and back in the night, giving her her meds, spending our every waking minute attending to her."

So, see, this is the new standard. Anything less than that is misery.

She has called me and the sisters in various modes of crisis, wondering what the plan is, wondering how she got moved to this new room that looks exactly like the old room, wondering when she'll go home. She has made reasonable calls too, checking, for example, what time I'll pick her up for church. But in general I think we see a skewed picture, because I think she calls mostly when she feels bad, and we don't hear much about days that go well.

Today's church went fine, although she slept (so did I). Back in her room, though, I wondered how long she'd last in assisted care. (Skilled nursing would be next, a nurse present 24 hours.)  Julie had to help her going to the bathroom -- I mean, completely help her -- and we both wondered how it goes when no one is with her. We helped her into her bed, and she kept up a series of hopes/commands that she wants somebody with her all the time. Like on her trip.

We have all explained the problem with that -- chiefly, that we work, and secondarily, that we likely couldn't stand it. She says it wouldn't have to be one of us -- like what about Ca, who took care of my dad, and then my mom, before she moved. Why, she should be able to move here; maybe she needs a job!

That is ludicrous, but I will look into paying for some more face-on time.

There will be ups and downs, but this will never get any better. Parkinson's is an awful thing. I say to myself, "I'm never going to be like that." But she said that, too.