Guest post

Update from Sister K, who is in town:

I arrived yesterday at 1pm and found Mom dozing in her bed. Two minutes later D and C showed up for a visit, and there was a steady stream of caregivers and guests all afternoon, including Al and An from upstairs. 

At 5 we went to dinner and ate near Pat and Grace, both 94 and 100% present, and the meal was silent but not unpleasant. Be arrived but in an unsociable mood due to leg pain so she sat alone in the private dining room. A mild-mannered married couple sat at their own private table next to the group table and spoke a mixture of English and German. 

This was part their conversation during the dinner of what was called "pork marsala":

M: Wiener schnitzel!

W: Well, it isn't advertised as such so it can't be held accountable for what it doesn't pretend to be.

M: There is recognition in the audience!

(Later)

W: The pork is good if you take off the breading and dip it in the sauce.

M: Well, mine is completely breaded -- it wouldn't be wiener schnitzel if it wasn't.

W: It isn't wiener schnitzel, breaded or not.

After dinner Mom had a thorough "bed bath" with wonderful aide Ay. Jon came and we all chatted for awhile and then Mom was ready to sleep and Jon and I went out for a drink.

This morning we ate breakfast with Be, who was in a much better mood, and the gracious Grace. They reminisced about time spent in NYC. Mom could not really follow but her comments were somehow melded in and she seemed to feel a part of things. The social time wore her out and she zonked for about a half hour. 

At 10 she was taken to PT in the basement for an hour and 15 minutes! When I left her there she was doing an arm workout like pedaling. She can walk with her walker for short distances and with lots of support. Tomorrow I'm going to stay and watch the whole thing so I have a better sense of what they do with her.

She took a huge nap after PT and then I dropped her off for a late lunch at 12:30 (everyone was still there and a bevy of student nurses were chatting them up). I went for a run and returned at 2 to find her asking after me. 

She couldn't really sleep much in the afternoon so at about 4:30 I took her upstairs where we visited her old room and sat in on trivia for a little while. None of it seemed to stir her memory too much, but she happily greeted the staff members and they hugged her. Julie came by for dinner and we ate with Ja and Be. Mom was exhausted after dinner and went to bed before 7. 

Mom is pretty confused about what's what and where she is and where she's been and what's happened to her. When she visited Mom, An kept saying "Mary, I'm soooo sorry about what's happened!" Finally Mom said, "I'm getting pretty sorry about it too the more I hear about it!" She has no memory of her hospital stay or the surgery, or that she used to live upstairs.

That's the news. I'm sitting near the bistro as I write this since I have no wifi in the guest room. During her naptimes I'm keeping busy with my homework since classes have started.

Full credit

Mom with her walker,
surveying Julie's garden in early August.

It has all happened so fast, this decline. She fell a third time last night, after the ambulance had brought her back to the elderly housing place. She has been moved to the skilled nursing unit -- nurses always present -- and in trying to get out of a wheelchair, she fell down on her knees. No injury, but what is skilled care about except for preventing falls like this? Any transition from bed to wheelchair to table or whatever MUST BE ASSISTED. 

Her new room is small, I would say less than half the size of her room upstairs. It's got a single bed, not the queen she had before, a small closet, a dresser, a TV, and a bathroom. We are slowly moving clothes, toiletries and everything she needs down from the assisted living room. They're holding it for her for now, but she may not move back. 

She has lived through a lot of upheaval in the last year and a half -- moving to a new place in a new city, moving from independent living to assisted living, breaking her hip, spending days in the hospital, and now moving to a whole new room on a whole new floor. All of this, of course, after my dad died, after her heart surgery, after falling and breaking her elbow, after breaking her kneecap, and after Parkinson's set in. I don't know that I could have lived through any of that without falling into despair, but she has handled it with a kind of grace and sense of acceptance that is remarkable. I give her full credit. 

We've made visits daily since this happened, Julie making as many as I have. The church sent flowers Sunday, and she's had a couple of visits from the pastors. She naps often and thinks that anything that happened before the most recent nap happened yesterday, which I've stopped trying to talk her out of. 

I talked to a nurse yesterday, and will meet with a social worker maybe this week, to plan ahead in case there are decisions to be made that she may not be able to make at some point in the future. It was sobering.

I didn't think this would be this hard.

Humbug

Door County

Mom's going to be in the hospital another day or two, getting out maybe tomorrow or maybe Monday. 

I saw her today and she looked pale and wan and wanted to leave. I felt bad for her. It's dull there when they're not tending to her, and she doesn't read or watch TV or do anything to entertain herself. I read her her mail -- Dot, MM -- and she liked that, and we discussed her junk mail piece by piece and threw it all out. It was something to do. 

I stopped at her place and met the rehab nurse and went upstairs and checked Mom's email. That room will stay hers until they know what's what. 

I think, soon, she'll need constant care. I can't see her bouncing back from this very well. The nurses say she'll get her strength back with therapy, but she didn't walk well before she fell, and to risk the other hip? It's not worth it. 

This property for sale -- seriously!

The broken hip

Hospital room view

Mom fell in her room Tuesday afternoon and broke her hip. Scraped her arm and knee pretty good, and said she waited "an hour" for the aides to find her writhing on the floor. But 10 minutes to Mom feels like an hour, and it might not have even been 10 minutes.

She had surgery Wednesday evening, and it helped moderate her pain, but if she walks again, I will be surprised. She fell using her walker, and before and after her fall of a week and half ago, she has had regular near-falls with her walker, and has gotten less and less steady on her feet.

It's been a difficult week, trying to finish my work, running to the hospital and back, sitting with her, she and I both bored, and waiting in the waiting room, me just as bored. Her thoughts and speech have been jumbled, and today when the case manager at the hospital called and said that, "because of her confusion," they would invoke my power of attorney in her move back to her place (to the rehab unit there), it shocked me a little. Not that I haven't been doing that work, taking that responsibility, right along -- but to hear from an outside professional what we privately observe as her wild state of mind threw into stark terms the depth of her decline.

Laying in bed, she has rambled intricately and impossibly between her old home, her summer place, the hospital, her elderly care place, and between people present and gone, bringing up her mother, her childhood, me, my dad, her children, somehow confusing them with Julie. When the nurses ask her a question, she'll answer in a reasonable tone, and with proper head-nods of emphasis, such a pastiche of utter nonsense that they are forced to answer "OK, OK," and look to me for an answer.

If I'm there.

I'm not going today. It took a broken hip to get her the constant care and attention she so craves, and she is well occupied. When they leave the room, she gets somebody to call me and when I answer she complains to me bitterly that the hospital staff is "not doing anything. I'm just lying here and they're not doing anything." It makes me want to scream.

The care, the need, the time she requires will only grow when she leaves the hospital -- likely tomorrow -- and settles into some unsatisfactory new state of life.

My friend Tom, and others I know, have said their elderly parents never recovered from a broken hip, and some died right there at the hospital. I don't wish for that -- and yet she is leaving bit by bit.

That same orchid

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.