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.  

The big picture

by JEV

Sister L, midweek:

It’s the end of our second full day and Mom has expanded in my mind into her former self, though a much slowed down version. Visits with her are like forgetting then finding your glasses. At first you can’t see her, just the infirmities, but then you begin to piece together all she can and does do. She puttered in the kitchen this evening, turned down the heat under my bubbling bolognese sauce, tore apart lettuce leaves for the salad and played a decent game of Scrabble. She set the table, carrying full glasses of water. I watched her like I used to watch my kindergartners, proud of her independence, but worried she’d trip and fall. “Maybe one at a time?” I couldn’t help but say as she froze & shook on a pivot turn. 

What I miss most when I visit her at Cranberry is Kitchen Life. It adds so much to life to be able to set your own table and tear your own lettuce with your own hands. Life seems so sterile without this ability, especially for Mom, who spent so much time in a kitchen it’s teeth-brushingly familiar. 

The sky is spectacular here (did you catch Venus & the moon?) and the water is icy cold, but we’ve been in the lake, even Mom, up to her thin, unsteady ankles. C just left with E and J to pick up E’s son, K, who arrives late tonight. Jon arrives tomorrow (Don’t tell him we’re planning cake).

Sister S and I are on constant, distracted duty, but not unpleasantly so, given the weather, quick swims, late evening walks and cake-donut-with-chocolate-icing highs we are on. The Meds must be administered like the Liturgy of the Hours— Matins, Lauds, Prime, Terce, Sext, None, Vespers and Compline. Did I miss any? This is what we constantly ask ourselves & each other, setting our phones or watches & then misplacing them as we steal off for naps, and missing the alarm, but never the meds, not a one. Between the 3 of us we have internalized our the Liturgy of the Meds.

Complex arrangements

At the lake

Sister S (at the beginning):

Hi sibs,

Mom is working up a lot of anxiety, as expected. She had P (the social worker) call me this morning about the rooms, and I assured him that we have reservations through airbnb. He was relieved because, as we already knew, the guestrooms were booked.

Then M called me (nurse) about the medications. She will have them all packed up in bottles with detailed instructions. I told her our flights arrive about 5:30 p.m Friday but we will need to pick up the car so will not arrive until about 6:30 or 7:00 (?) We will pick up the meds from the nurse on duty SATURDAY morning at 9:00. Our ferry leaves Saturday at 12:30. The following Saturday, our ferry sails at 4:45 and lands at 6:15 p.m., so we will have ALL meds except the one taken right before bed. She will also talk to the doctor about a medication to take as needed for anxiety.

Anything else I should look into? I talked to mom between calls, and said she doesn't need to worry, that we have all the arrangements made, and that it will be worth it to spend a whole week at FF. I think it's good to focus on that rather than on any trip details - the beach, the lake, E, etc. Sister K said mom was asking her about "the boat" - who will drive it, how can we do it without a MAN? 

Love you all - wish us luck!

Mom's Last Trip (again)

Mom in a Box

Two or three trips beyond the first time we said, "This is Mom's last trip," she's making another one. It's summer, so the summer home beckons. My sisters are driving this train, and I have recused myself. Mom is all wound up, making calls, asking again and again about plane tickets, ferry rides, bus rides, car rides, and "how will we manage without a man?" -- and for all her questions, she absorbs nothing. '

The trip itself will be awful, and even arriving, she will need constant monitoring. If she wakes from a nap and there's no one within earshot, she will start yelling. And just keeping track of the pills -- times, doses, effects -- is a part-time job.

I called the nurse today, and she said, in her tone, that she wouldn't be doing this if this were her mom. But then, it's not her mom.

I am so glad, so very glad, I have other plans.

Butting in

It looks like a lot of stuff, but it's the least I've taken on a long trip in many years. I've spent every waking moment working on it for a week and a half. I got a water bag the size of a frozen waffle, a backpack the size of a golfball, a "sheet" the size of a bratwurst, and a pillow smaller than a baseball. Thank god for REI. Next week I'll ride from Cheboygan, Michigan, to the ferry in Ludington and home -- about 300 miles in six days, unless I collapse along the way, which is entirely possible.

But enough about me.

Julie and I stopped to pick up Mom this morning for church, and couldn't find her in her room till she surfaced from her bed and looked around groggily. She seemed diminished, small and helpless, her hair flat, and her eyes squinting. She looked like she would not last long. For all my prickliness about my mom, this melts me. Her one existence, and this is what it's come to.

She'd gotten up, showered, dressed for church, and suddenly it was nap time. "I sleep all the time now," she said. Sleep is a prized commodity in the family -- afternoon siestas are a specialty -- but she sleeps more than she's awake, and can't go three hours without hitting the wall.

She hinted at a disastrous bathroom event of the day before, but she seemed recovered and quickly gained traction. "Party in the elevator!" she said when the car came and was nearly full.  Church was a short summer service, more words than music, and Mom's eyes roamed the sanctuary for the quarterback, who was not there. "His wife wrote me a card and I have to meet her!" she said, though, as I have reported, she has met her several times.

Back at her place, ordering brunch, we met up with the family of J, a resident, whose adult daughter is getting married on Friday. We congratulated him and the daughter, and he asked us kindly not to tell his wife, B, about the wedding. She lives in the Alzheimers wing and was not going to be attending. "Too many people," he said. She'd be confused and anxious. A very sad thing.

Mom heard the wedding part, but not the don't tell B part. So she got up and was making her way to their table to, well, talk about the wedding, see how she could help, ask the couple how they'd met, heaven knows what. Julie saw this developing and derailed her and brought her back to our table.

This is the same impulse that had her fretting and fretting over the death of the son of a woman who lives in the place -- a woman she hardly knows. She wondered how she should respond, as if the woman would be keeping track of responses -- my mom's, especially. I had to talk her out of going to the woman's room and knocking on the door -- to say what? What exactly?