Uncle M's visit

Julie's garden

I feel so sorry for my mom lately. She still has bright periods, especially early in the day, but her bouts with confusion lately have seemed darker and more dire.

Uncle M got here last Saturday, and stayed till Thursday, and I stepped back. He and Julie took her to church, and we had him over for a grillout that night -- after Mom's bedtime. Then I went Wednesday and ate with M and Mom at the fancy restaurant.

She was surprisingly sharp, and looked good. She parried with Mark a little, and could laugh at them both. He is not afraid to challenge her when she acts needy or demanding or feels sorry for herself -- when she manipulates -- and she gives it right back. "Thanks for the sermon," she told him once.

M sees Mom's whole life, and can sort out what's always been her -- in a sense, fair game -- and what's attributable to the disease, which she can't be blamed for. I don't have such a clear view, so I just muddle along trying to protect myself.

Here's a voice mail from Mom, a couple days before M arrived:

"Hi Jon, this is Mom. Sorry to bother you, but I just want one thing. What is M's last name? Is it M -- I just can't remember which are his parents and what his last name is. Give me a call when you can. Thanks."

Wow. When I got back to her, she said, "I got it figured out." She'd called, I think, Sister K, who said, "Do you remember M's your brother?"

She called me and M, back at home, a couple times yesterday sounding completely down. In one call to me, she wondered where she was, when she was going to leave, where she lived, how she got there, when I would take her home, and other things that made even less sense. I suppressed, with effort, my urge to rush over there to give comfort, but instead just kept talking, talking, talking, until she calmed down a little and could manage. M said she called him later and some aides had come and told her firmly it was time to eat, and after dinner she felt better.

There's no formula for it. Food, fatigue, time of day, family at a distance -- it all figures somehow, but predicting what she feels and why she feels it -- and what will make her feel better -- is tough.

*
She's using her walker almost all the time. M arranged to have some of her chairs switched out for chairs with armrests, which allow her to push up and stand without calling for help.

The bottom of the bike.
(Maybe Bruce will appreciate this.) 

Despair

Longfellow

A tough three days at work, and I came home and went to see Mom without the little lie-down I usually allow to fortify myself. The dining room was packed -- busiest I've ever seen it -- and we sat near the entry across from a blind woman named Gloria, and her paid helper. Gloria was old, bent, charming -- her smile, which possibly she'd never seen, radiant.

Mom was solicitous of her, and it was little hard to watch, as her halting manner, quiet voice, and strange thought linkages made her so much more than Gloria the one who needed sympathy. The blind woman was doing fine.

The buzz in the dining room was D and C and Jim and B's big day trip on a bus to Manitowoc, where they toured the Cobia submarine. They'd just returned, and in the other room we could hear them talking about it. Mom told me, possibly enviously, about their trip, and said she wouldn't have wanted to go anyway, because it was $72, and so much time on the bus. The ride alone -- easily two hours each way -- would've driven her mad, I think, and she'd have been too tired to get on the submarine.

It was just, what, three or four years ago when we took her down to St. Pete in Florida, and she climbed nimbly, without assistance, onto my friend's big yacht, stepping across the gap between dock and ladder, and climbing up and over the side. Since then her world has shrunk and shrunk and shrunk to the point where it now consists mostly of two rooms and the hallway between them, with the occasional foray to church.

Walking back to her room, she said she was depressed. I asked why, already knowing the answer. "Because I want to be with my family." It is a bottomless well.

In the room, she gave me a stack of papers to go through, and we went through her email. I read her the obit of her cousin-in-law's daughter, a woman about my age who had had a tough time. And I showed her, once again, pictures from the college reunion she'd missed, and a family shot Sister K had sent.

Her brother, Uncle M, is coming Saturday, and we went over that several times, the calendar on the wall not quite a sufficient explanation. She has been excited about this and has called Uncle M over and over again, but tonight she seemed almost fearful. "I'm so scared of seeing him, knowing him. I haven't seen him for years and years and years."

"Mom," I said, "you saw him just last summer, in Colorado."

"I did?"

She did remember, though, after a few minutes, I think.

The better news is, the staff rearranged her room, and she's using her walker everywhere she goes.

Shaky

Sunday

Church was short today, and Mom wanted to get out of the pew right away. I held on to her tight and got her to the bathroom and worried as she went in, sans walker, that she might fall inside. She was back out in just a couple minutes. "I don't feel right," she said. "I went inside and all I could do is just stand there and just shake." She hadn't even entered a stall, and a woman had asked if she could help, and came out to find me, followed shortly by Mom.

We drove back to her place and I brought her up to her room -- walker now employed -- and watched as she got settled in the bathroom. Julie came, and we went down and got breakfast for all of us and brought it back up. Mom ate just a little, and we talked about a relative, Ta, who had died -- the second death in that family, a woman in her 50s -- and of her friend Ka, who had been in Cranberry, but had been moved to skilled nursing.

Mom kept insisting that Ka had had a sex change, and that she had once been Shawn, a neighbor boy we grew up with, who had died in a car accident when he was about 20. Ka has a kind of masculine demeanor, and Shawn and Ka did have a facial resemblance -- high cheekbones, tan coloring, pleasant fleshy faces -- but it was very odd. We straightened it out for her a couple times, but she kept coming back to the sex change and Shawn.

Finally she wanted to lie down. The narrow passage in the bedroom made the walker difficult to negotiate, and it took both of us to get her settled in bed. She can't stand or even get into bed without help. Julie said it seemed like she'd need a wheelchair soon.

We realized late that she had missed her 10 a.m. pill, and, although it's not a time-sensitive pill, maybe that was part of everything. She normally is not that confused that early in the day, and yet I have seen this shaking and unsteadiness growing, and it is not going away. She got the pill about 11:30.

We asked the staff if they could have their maintenance guys rearrange the furniture, to make navigation with the walker easier.

One other topic we talked about was yet another death -- a woman who attended the church. So many deaths, swirling around! This one hadn't been unexpected -- she was ill for a long time, and used an oxygen tank.

Mom said, "I wish I could join her, the way I feel. Go to heaven."

I remember when this all started, maybe four years ago, when her Parkinson's was just a tremor in her hand. It made her angry with herself, and she said at the time, "I wasn't going to be like that." She wasn't going to be a shaky old lady. But we don't get to decide.

A turning point

I got a call this morning from a nurse. She said Mom had fallen trying to get out of bed. Banged her knee up, but was otherwise OK.

So I went after lunch. They were all still sitting at the dining table, so I sat for minute and then I took  back to her room and got her walker, and we went in search of the physical therapist, who the nurse had told us to look up. We never found her, just a ditzy woman who was the "occupational therapist," who seemed to be doing nothing.

I have to go more often on weekdays, during working hours, to see the right people.

Anyway, this is a turning point. Her walking is so unsteady it's a wonder she hasn't fallen more often and more seriously. She can't move any way but straight ahead, and from a sitting position, she has trouble standing, and a lot of trouble balancing. I told her she has to use her walker all the time, and she said she knew that, and would do it. We will see.

I have to give Mom credit for knowing what she needs when she needs it. Unlike, say, Julie's mom, who refuses to change, and insists she needs no help out of a puffed-up sense of pride. So many old people are like that.

So, it's another step, another stage. So much has changed in a year and a half.

Manias of kindness

The Highland Games

Such a disturbing visit tonight. I went for dinner and arrived just a few minutes after 5, and everyone was already seated. The chair left open was at the end of the table, one space away from Mom. The dining room was too hot, and Mom's face was flushed and frozen, a red mask. She was bugged that we weren't sitting together, but when those around us offered to move, I said it was fine, and she said it was fine. We should be able to sit one space apart, I thought.

But the offers to move continued and continued, from the left and the right, and even two spaces away, right on through dinner. Voices rose and L, on the right, who never wears her hearing aids, said "What? What?" even as she continued saying she would move. Bent-over A, on the left, could not bear the thought of letting it lie, offering, out of a near mania of kindness, again and again, to either switch with Mom, or scoot her chair over so another chair could be put in, all of which I declined over and over, till I finally stopped replying to put an end to it.

After three bites of her food, Mom stood, and I thought: Oh, now she's going to insist on changing -- and I think she did think of that -- but then she pushed her plate toward me and said she couldn't eat any more, and I should have it. I said I didn't want it. She pushed it again, and I said, "Just leave it there." She still stood, directionless, lost  -- she almost never will just sit and stay -- and finally said she had to go to the bathroom and hobbled off.

When she got back, she looked ill, and said she was too hot, and I took her to her room. It was cooler there, and, yet again, she would not sit. She stood at the table, fingering papers, walked to the bedroom, and back to the table. She said she wanted to make a call, so we called Sisters till we got S, who I could hear chatting amiably, informatively, and Mom seemed to lift a little bit. And, of course, along the way, she managed to hit on her incessant theme: "I'm getting tired of this now, and I want to live close to my family, but they're not even home."

I wish she had an interest in something, anything, outside of us.

We wrote a check to church, and then she had to go the bathroom -- it was almost like it was happening, but she was afraid that I would leave if she actually took the time to go, so I told her to go, and sat glumly while she went, calling out "Wait!"

Her walking is perilous at almost every step. She's had a lesson with a walker, and been advised to keep the flimsy walker she has, for now, and not get, as she said, "a leather one." And she went to the dentist, she said, "for five minutes. He said my teeth were good."

Nice weekend

The Menomonee River Parkway

It's been a quiet few days Momwise. With Sister S in town, I've stepped back. It is true that she is happiest with a kid in view -- she is nearly greedy for the time she spends with one of us. Yesterday, Mom woke from a nap and found Sister S missing. So she called Atlanta, Wauwatosa, and the front desk, who called the guest room where Sister S had escaped to. Let this be a lesson to all mothers: Don't let your children grow up to be hostages.

We had S over for a grill-out last night, and I took S and Mom to church this morning, myself napping through the entire service. I blame my dad as role model for this. Mom was dressed up, looked good, and was as sharp as she gets. With the quarterback missing, we had a tension-free morning. We had brunch in the Bistro as usual, and when S and I went to get food and coffee, Mom called me back to sit with her, as if 20 feet away was too far.

I had Saturday free and rode my bike all over town. Here's my trip:

The Highland Games
Wauwatosa

The Highland Games

Doyne Park

Downtown

The Biergarten in Shorewood

A shocking confession

I had dinner with Mom in Cranberry last night. She was her evening self -- feeble, anxious and unable to relax. She said she was worried about her walking, and I was too. She moves -- not walks really -- sliding one foot just barely ahead of the other, and when she does this fast, it's almost funny, but too, too sad.

She has a cheap, aluminum walker, which I had her experiment with, but it's not really even strong enough to hold her up if she started to fall. I was going to buy a better one today, but Sister S arrived for the weekend and learned that the place will provide one.

At dinner they served duck, and D, wearing dark glasses to hide her red, post-cry eyes, said it was great, which is a first from her, I think. It brought up talk of local restaurants, and a movie everybody had liked -- "Babette's Feast" -- and even D praised it, another first. Mom looked at me, stony-faced, and said she didn't understand what we were talking about.

"A restaurant, Mom," I said. And, "A movie."

Back in the room, she said C and D spend all their time together, and the day before, she said, "I got so mad, so mad inside myself. And I went down to the, the place --"

"The Bistro?"

"Yes, and I bought a $20 bottle of wine, and I brought it back to the room."

She said she poured a glass, sipped it, but it was Merlot and she hated it, and put the bottle in the fridge. She'd had some since then, she said, and it tasted better.

I was shocked at this story. She has never been intemperate. To run to drink because she's mad at her friends? And Merlot? Her doctors have told her stay away from red wine. I think my mother was popular all her life, and this social rejection -- it has thrown her.

She must have seen my reaction. She put her finger on my face, where I'd cut myself shaving. "It's like this," she said. "It was a little mistake."

*

Sister S is here, huzzah. Friday night we'll put Mom to bed and Julie and S and I will go out for a late dinner.

*

The spy ship was gone by last night, and everybody said they missed it.


The spy ship: http://www.jsonline.com/news/milwaukee/wondering-about-that-ship-anchored-in-lake-michigan-heres-the-answer-b99512125z1-305897831.html

Another picture, just because I can.