Category Archives: family

waiting for Grammy

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waiting.jpg

He’s waiting for me on the steps to my new door to a new life.
The space for me at my daughter’s is ready except for the painting. I am conflicted about leaving here, but, after eight years of the increasing burden of caregiving, I just can’t do this any longer.
When my mother was my age, she was going on cruises with my dad, surrounded by couples with whom they had been friends since their dating days. My dad passed away in his early seventies. I want to be able to have some sort of life before my number comes up.
I imagine being able to come and go as I please, being able to sleep through the night, sitting outside on my steps in the morning and having a cup of tea in the sunshine. Here, I am not only sleep deprived; I am deprived of all of those small things that become big things when you don’t have them.
I imagine being able to get off my anti-depressants, walk my way off my cholesterol med, throw away my muscle relaxant.
It’s come down to my life or hers. My brother, who has control of everything here, will have to figure out how to get her the care she needs so close to the end of her long life.
I don’t know how long my life will be. I can’t give away what’s left. Not any more.
And waiting for me with anticipation is my grandson, whose loving energy will help me overcome the guilt I will bring with me.

Myrln Monday: Wind Walking

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For a while before his death in April 2008, non-blogger Myrln (aka W. A. Frankonis, i. frans nowak), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter, who has salvaged his published, performed, and none-such writings, continues to send me some to post posthumously.

Wind Walking
When you walk in the wind,
sometimes it’s helpfully behind,
other times right up in your face.

Which makes wind a lot like people.


waf oct99

re-entry

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Four days with my daughter and family put me in another reality, one suffused with conversation, laughter, play, sunshine, and time — things I don’t have here, where the insistent needs of a 92 year old woman hold just about every moment hostage.
I was able to sit in the dappled shade and finish the mystery novel I started to read last month. I was able to relax enough to ease the spasms I’ve been getting in my back from an out-of-place rib. I sat on the floor and with my grandson and his various construction, rescue, and police vehicles. I slept like the dead.
I never got to post a new piece on the education issue. That will have to wait until next week. As for now, I’m struggling with re-entry.
Meanwhile, if you’re hungry for something more important to read, go over to No Utopia to this post about what conservative and writer Andrew Bacevich had to say to Bill Moyers during a PBS interview.
Bacevich’s responses include this:

Well, I think the clearest statement of what I value is found in the preamble to the Constitution. There is nothing in the preamble to the Constitution which defines the purpose of the United States of America as remaking the world in our image, which I view as a fool’s errand. There is nothing in the preamble of the Constitution that ever imagined that we would embark upon an effort, as President Bush has defined it, to transform the Greater Middle East. This region of the world that incorporates something in order of 1.4 billion people.

I believe that the framers of the Constitution were primarily concerned with focusing on the way we live here, the way we order our affairs. To try to ensure that as individuals, we can have an opportunity to pursue our, perhaps, differing definitions of freedom, but also so that, as a community, we could live together in some kind of harmony. And that future generations would also be able to share in those same opportunities.

The big problem, it seems to me, with the current crisis in American foreign policy, is that unless we do change our ways, the likelihood that our children, our grandchildren, the next generation is going to enjoy the opportunities that we’ve had, is very slight, because we’re squandering our power. We are squandering our wealth. In many respects, to the extent that we persist in our imperial delusions, we’re also going to squander our freedom because imperial policies, which end up enhancing the authority of the imperial president, also end up providing imperial presidents with an opportunity to compromise freedom even here at home. And we’ve seen that since 9/11.

Myrln Monday: notes from “Nepperhan Days”

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For a while before his death in April 2008, non-blogger Myrln (aka W. A. Frankonis, i. frans nowak), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter, who has salvaged his published, performed, and none-such writings, continues to send me some to post posthumously.
This is one: Notes from “Nepperhan Days” his self-tale:

Immigration experience of body and soul/heart as human condition. We are all immigrants. A family story of three Italian generations: those who left Europe, then the first-born in America and thus the first to be assimilated, then the second –born generation which rejects the experience of the 1st two before coming to realize we are all immigrants of a kind and thus come to anew place in the heart: immigrants to acceptance, love and pride in ancestry.

In many ways we are all immigrants.

Myrln Monday: SONG FOUND IN A DORY…..

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For a while before his death in April 2008, non-blogger Myrln (aka W. A. Frankonis, i. frans nowak), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter, who has salvaged his published, performed, and none-such writings, continues to send me some to post posthumously.
This is one.

SONG FOUND IN A DORY BOBBIN IN THE BAY IN KANKANEMONIOUS GULCH
Enter an old man who moves to a bench and sits. He wears a heavy topcoat, a suit, vest, old shoes.
Very deliberately, he begins going through his pockets and removing the contents.
Coat: one glove, a crumpled handkerchief, a cigar butt.
He removes the coat.
Jacket: one key, a stub of paper, a broken pencil, an empty matchbook, a red balloon.
He removes the jacket.
Vest: one paper clip, a creased snapshot.
He removes the vest.
Trousers: a second crumpled handkerchief, a penny, a hole in the pocket, a stone.
He sits, moving his hand from object to object without touching any of them.
(Sound in.)
Small girl: (singing)
Bring back the old man’s wishes.
Bring back the old man’s hat.
Bring back the old man’s wishes.
(Slow fade to black)

saved by a craft

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Sometimes these days I think the only way I have stopped myself from strangling my brother and/or my mother is by picking up a crochet hook or a pair of knitting needles and going at it with a new hank of yarn.
I realized recently that I am a “process” craftsperson rather than a “product” one. I have at leave five projects started that I’ve set aside because I got to points in the patterns that required a lot of attention to detail. So I’ve started a lightweight crocheted afghan for when I move in with my daughter and family. It’s the same stitch over and over again — striped using two related yarns. There is something about the rhythm of the hand movements that’s mesmerizing, mentally relaxing. I can sit in the middle of a raging familial storm and block it out with the repeating stitch mantra. It’s certainly better for my health than drinking.
Oh, I have finished projects — like this and this and this and this.
But that was all before I moved my mother and me in with my brother. That was before my mother needed 24/7 care. Then I had the mental energy to focus on the details of form.
Now I just need something to do with my hands, something to intrude between my world and my brain. Something that I can easily put down if I have to.
So, it’s
Yarn over hook.
Insert hook in the next stitch to be worked.
Yarn over hook.
Pull yarn through stitch.
Yarn over hook.
Pull yarn through all 3 loops on hook ……….

a day in the life

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from the (free) magazine for dementia caregivers published the Alzheimer’s Foundation of America (careADvantage, Summer 2008 — PDF) – an article by Richard Taylor, PH.D., a retired psychologist who was diagnosed with dementia.

When dementia enters a person’s mind, when it enters dynamics of a family – of a husband or his spouse – how we communicate, why we communicate should/will shift.

[snip}

It should shift away from mutual understanding and agreement and toward staying connected, giving and receiving love, supporting each other in ways we never thought we would have to do. It gets less and less about about the facts and more and more about feelings. It moves (quite unfortunately) from looking towards tomorrow to looking back at yesterday. (Today just gets lost!)

As the disease progresses, the burden of adapting, of figuring out what the other person wants/means/understands shifts more and more into the minds and hearts of caregivers.

About seven years ago, when my mother was first diagnosed with dementia, I started reading and researching what would mean for both of us. Slowly but surely, I became the mother and she became the child. That was something to which it was really hard to adjust. Now, she calls me her sister. I don’t try to correct her. It really doesn’t matter. I’m her primary caregiver, and it’s me to whom she looks for comfort and safety.

That’s why my stomach is in knots at the thought of leaving her with my brother, with whom I can no longer share her caregiving because we disagree on so many things of importance in every day life. I can take her with me, but he has POA over her finances. Control is a big issue.

I don’t know how he thinks he can take care of her without me and without paying to bring in qualified and caring help.

This is what today was like for me (other days, it’s giving her a shower, changing and washing her bedding, planning and shopping for her food, doing her laundry, cleaning her floors [which I don’t get to nearly often enough]):

11 a.m. – 2 p.m.: My shift. Mom slept until noon. When she got up, I made her lunch (of tuna and egg salad, which I made the day before during my evening shift and which she usually likes). She ate a half of her sandwich, a plum (which, of course, I had to peel for her), a cup of her fake coffee, and a couple of cookies. I gave her her antidepressant and some Tylenol because her shoulder was hurting. I wrote down the meds I gave her on the log sheet on the frig. I noticed that she had a sore in one nostril, so I put some salve on it. By 1:30, she wanted to take a nap. When my brother came to take over, I said I thought we should take her to the doctor. He responded with a detailed explanation of what he thought the sore was, and I couldn’t get him to agree that she needed to see a doctor. Not wanting yet another argument, I didn’t make the appointment.

2 – 5 p.m: My free time. I went outside to water my parched tomato and other plants, and then I harvested some basil and parsley for freezing. I killed a lot of Japanese Beetles and had to throw away two of the tomato plants because they were totally dead. Then I went inside and sorted through stuff I could give to the Salvation Army. I answered my email, ate a bunch of delicious cherries, played Scrabble.com with a friend in Saratoga, and did a search for where I could take my broken electronic stuff for recycling. It turned out that there will be a special day in this town where I could do that. I shared the information with my brother.

My brother’s shift. As far as I could tell, when she woke up, he gave her more to eat because she was hungry, and she went back to rest. He put the tv on and sat there tapping on his laptop. I stopped in at one point to use the stove to boil potatoes for salad. I came back to check the potatoes around 4, and he asked me if I made the doctor’s appointment. I said I didn’t because he didn’t tell me that he agreed that I should do it. He blamed me for misunderstanding, and so I called the doctor, who, it turns out is tomorrow and all next week.

5 p.m. – 8 p.m.: My shift: I made chicken and mashed potatoes for supper. She sat in her recliner in front of the tv and ate some cantaloupe while I watched the news from the kitchen. My brother walked in and started to check what else was on television. He does this often, and I reminded him that it was my shift and everything was fine and I was making her supper and we were watching the news.

He decided that she should have some root beer with her dinner (I would have given her juice). She ate her whole dinner and then I took her outside for a while to walk a little and then sit. While we sat, I cut and filed her nails. We went back in for dessert.

She was just finishing her fake coffee and cake when he came back in – poked around in the dish drainer and chastised me for putting a fork in the place designated for knives. (I have learned just to say “umm” and not try to argue because it upsets my mom) I knew that she was getting a little sleepy, but she was sitting calmly watching the tv with me while I made some potato salad (which she likes), so I left well enough alone.

He decided she should take her laxative and should lie down. So, he gave it to her and took her into her bedroom; but she sat up right away and started fiddling with the quilt. He started to be curt with her, which got her upset. I asked him to leave because it was my shift anyway. He finally left, and I had to sit down next to her with my arm around her for more than 20 minutes to calm her down. During that 20 minutes, I had to help her up to the bathroom three times. Her stomach hurt but she couldn’t do anything.

She finally agreed to lie down and rest.

8-11 p.m. My brother’s shift. My free time. I started this post, packed up some boxes of my stuff, fed the cat, got myself ready for bed, and watched my favorite summer tv show: Burn Notice. When I went down to start my shift, my mom and my brother were laughing and talking. She is fine when her caregiver is paying positive attention to her. She has agitated meltdowns when she is spoken to harshly or chastised for doing things wrong.

It is now 12:30 a.m. When my 11 p.m. to 11 a.m. shift started, I gave my mother a snack and a Tylenol, and then I helped her brush her teeth. She wouldn’t put on her nightgown but wanted to sleep in her clothes. I asked her why. She said because she was afraid. I asked her what she was afraid of. She said she didn’t know. She is often afraid but doesn’t know why. I’m haven’t gone to sleep yet because, if she holds true to form, until about 3 a.m, she will be up at least once an hour to go to the bathroom, and she needs me to help her.

She went to sleep without a fuss because her previous hours were calm.
I don’t want to leave her where I’m not sure she will get proper care. She will be lost without me despite the fact that she spends as much time with my brother as she does with me. If she stays with him, he needs to bring in qualified care. And that means that he will have to spend her assets to do that. But he doesn’t believe that I’m really going to leave; he doesn’t believe that our mom’s dementia is as bad as it is; he doesn’t believe that he will have to bring in qualified care to replace me.

I can challenge his POA and take him to court if he fights it. A lawyer I know said that, if that happens, it could cost me as much as $10,000. I can leave her behind, visit, and if she’s not being properly cared for, ask Social Services to do an assessment.

Both her doctor and the hospice nurse (who will no longer be able to certify her for hospice services because there’s no indication any more that she might be dying ) have said that she belongs in a nursing home where she can get 24 hour care.
Talk about being between a rock and a hard place.

But no matter what, I have to get out of here for the sake of my own health and sanity.
I did not post this lengthy piece just to vent and complain. This is part of my documentation of this unbearable situation that I’m in.

ADDENDUM: It is 1 a.m. The electric eye alarm that my brother installed goes off to let me know that she is up. She is sitting in bed. Where am I, she asks. You’re in your bed, I tell her. Where am I, she asks again. I try to get her to lie down. She pulls at her sweater. Take this off she says. Do you want to put on your nightgown, I ask. Yes, she answers. And so we change her clothes and she lies down again. And so the night will go.

who am I?

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That’s the question she asked as she finally sat up in bed somewhere close to noon today. Usually she asks “Where am I?” Obviously, her dementia has gotten worse.
I tell her her name, in Polish, in English, her maiden name, her married name. By then she’s onto her other worry — “Can I go home now?”
It’s night now. I was with her most of the day, since my brother had a dentist appointment. When I’m with her, I try to respond with care to every question, every mood, every demand. After all, her world must be truly terrifying. And I’m her anchor.
Except she’s my anchor as well. I can’t move beyond her peripheral vision, or she panics. She is downstairs now with my brother, banging her cane on the floor and calling for me. My contact at the Alzheimer’s Association local chapter tells me that it’s not unusual for dementia patients to latch on to the most trusted caregiver and constantly shadow them. That’s what she’s doing, and it’s making me crazy.
I am holed up in my room, television blasting so that I don’t have to hear her distress. I am eating cherries and chocolate chip cookies. My stomach is in knots.
Meds only seem to make her worse in other ways. She needs 24 hour care, and it’s become too much for two people. But my brother wants her with him.
And I want to get away from this whole situation, even though she pleads with me: “Take me with you.”
It’s beautiful here on the mountain. But it’s also a prison, especially for her.
“Where are the streets?” she asks. “Where are the families?” she wonders as she looks out the window at the lush trees and patches of blue sky.
It’s hard to take her anywhere because she needs a toilet nearby. And her mood can go from placid to panic in a heartbeat.
She has lived too long. I hope that I am not still alive at 92. Or if I am, I still have my mind and my sense of humor.
Meanwhile, I’m sorting through all the stuff I brought with me to this place and downsizing. And packing.

Myrln Monday: a daughter grieves

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For a while before his death in April 2008, non-blogger Myrln (aka W. A. Frankonis, i. frans nowak), posted here on Kalilily Time some kind of rant or other every Monday. Our daughter, who has salvaged his published, performed, and none-such writings, continues to send me some to post posthumously.
On this Myrln Monday, however, she adds her own grieving voice:

Myrln Mondays: There have been a few in a row now, I think, that I have missed. Forgotten. And then when I remember that I’ve forgotten I feel terrible. And ironic. Because while I have forgotten I have not nearly FORGOTTEN. Not even close. It creeps up on me unexpectedly. Often at night as I’m trying to fall asleep. And suddenly it’s upon me. The too soon-ness. Too quick-ness. Unfairness. Eeriness. Incomprehensible
-ness. Surreal-ness. And I am overcome. All the clichés exist within me at once: it’s a bad dream and I’m going to wake up and he’ll still be here.

Just one more day — one more day to be sure we said everything. Wish him back – on a star, on the moon (“I had a talk with the moon last night,” he’d say to me, “and it’s all going to be fine”) — on my worry beads. Self-admonitions, I should have gotten out there more. I should have heard something was really wrong when we talked. I should have gotten out there more. The truth of the phrase “sickening feeling” because every time it comes my stomach hollows out and I feel like I’m going to be sick.

Then it’s gone. The same way each time: full of feeling foolish, selfish, sorry-for-myself. Like I’m the only one who has ever lost someone. Only one who has ever lost her father. Who has ever lost him too quickly, unfairly, unexpectedly. The only one who has had to continue on after…

I may forget the Myrln Mondays amidst painting new rooms, preparing for homeschooling, living my life (as my father would be demanding I do anyway as he pointed out in number 8 of his life lessons poem: “Remember the dead in your heart, but honor life and the living with your time and attention because afterward it’s too late”. but I have not FORGOTTEN. Not even close. And as everyone has told me, as painful, unbearable, agonizing, maddening, sad, lonely and empty remembering is, forgetting is far, far worse that all those together. So I am remembering. And missing. And hurting. And crying. And remembering. Always.

SAND HOLE
They excavated sand,
this father and daughter,
digging to China.
I knew it’d really be closer
to Afghanistan,
but their game had a tradition
to follow.
Fathers and sons
have growing between them,
which can be another kind of hole,
while
fathers and daughters
share games and imagination.
And dug holes
always come out in China.
I wonder where the holes Chinese dig
Come out?
Waf jul99

where stories begin

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Above the archway leading to my daughter’s country kitchen is a long wooden plaque that says “Home — Where you story begins.”
The story of my grandson’s 6th birthday party is not an unusual one — tables lined up with white paper tablecloths on which the dozen young guests crayon while waiting for the cake and ice cream, members of the family and extended family bustling around each other and gathering around for traditional candle blow-out.
The theme of my grandson’s party was a little unusual: Massachusetts State Trooper hats and badges and ticket books young guests created themselves. Even the cake was decorated with an image of the official State Trooper car.
What will be an oft-told family story, I’m sure, is my grandson’s over-the-top exuberance as he acknowledged each gift, even the ones that weren’t something related to being a cop — and especially the full police outfit that I gave him and that he wore for the rest of the day. For some uninherited reason, he’s enamored of authority-figure costumes — police, fire fighers, FBI agents/spies, doctors, soldiers…. Go figure.
On the drive out to Massachusetts last Thursday, I listened to some beautifully written stories by American combat soldiers on NPR’s Selected Shorts program (see Program 42 here). These were not stories about the inhumanity of war. Rather they were stories that reflected the sweet humanity and humor of the soldiers forced to fight the war, stories that reinforced the identities of these soldiers apart from the war.
While most of the ones read on the air were true, the most poignant to me was actually a work of fiction. It was about a female soldier taking her young son to the airport, where he would fly, alone, to his grandparents, while she went off to war.
Perhaps, some day, there will be no need for war stories.