Monthly Archives: July 2008

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

that strange world of dreams

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My dreaming life has always been more exciting than my real life. At night, I dream in color, with sounds and complicated plots. Lately, I have been dreaming of people I haven’t seen in ages.
Last night I dreamed of a woman friend who falls into that category, and a male friend of hers, whom I met only once decades ago and whose name I would never remember if I tried. But my dreaming brain remembered his name. In my dream, he was driving a very green van and pulled up to rescue us from some situation (that I now can’t recall).
My dreams are always situational and frustrating. Two nights ago, I dreamed I was in a large hotel (a building I dream about often; sometimes it’s a college or school, sometimes a hotel, and it’s always filled with Escher-like passageways, so after you leave a room, you can’t find it again). This time I dreamed about an aunt and uncle (now in their 80s), whom I haven’t seen or talked with in years. My mother was there, too, (wearing a colorful gypsy scarf on her head) and a 6-year old that was some sort of combination of my grandson and my son (who was wearing some kind of peach overalls). I left them all in a room, and when I tried to get back, I couldn’t find the room, or my room key, or the information desk. No one I stopped to ask was any help. When I went outside to try to get perspective, I couldn’t find the door to get back in. Of course, I woke up without any of it being resolved.
My most memorable dream (from more than 30 years ago) was one in which the planet was being invaded by large pastel colored creatures who looked like a combination of rats and kangaroos. If one bit you, you turned into one of them until they, or someone else, killed you. And then, when you died, you turned back into the human person you were. One of them chased me into kitchen, and I climbed up into the sink and reached into the cutlery drawer and took out a long fork (the kind you use to hold a roast while you carve it). Just as it lunged to bite me, I shoved the fork into the creature’s mouth.
And It started to turn into my brother. If I pulled the fork out and it lived, it would bite me and I would become one of them. If I shoved the fork in further, so it would die, it would turn back into my brother and my brother would die.
That’s when I woke up.
No wonder I grind my teeth.

CrossLoop: you don’t have to be there to be there

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Uh oh! Your computer is acting up again, and you’re not a techie. If only your daughter (or son or grandson or granddaughter) were there it would get fixed without a hitch. If only there were a magic wand that would just make it all work again.
Taking the “you don’t have to be there to be there” of today’s communications technology even further, there is a way to get a tech expert into your computer without either one of you having to leave your desks.
When an octogenarian in New Hampshire wanted to finally learn to use a computer, his grandson, a graduate student in California, set it up while he was home on winter break. The computer set up was easy; what was harder was showing his granddad how to do the things on it that he would decide he wanted to do, since they would be thousands of miles from each other.
Long cross-country telephone conversations was one way. But the grandson found a better way — a program called CrossLoop, where a free download offers a way for computer wiz grandson to get into his grandfather’s computer remotely. That way he could actually demonstrate to his grandfather how to do what his grandfather wanted to do, from Googling to email.
There’s even a video demonstrating the simple process on both sides.
This is what the CrossLoop site says about how it works:

CrossLoop is an easy-to-use desktop sharing tool that allows any two people anywhere in the world to connect live via computer. When both users install CrossLoop (a free and secure program based on TightVNC), one can easily connect to the other. From there, you can see and control everything on the other persons PC, making remote troubleshooting remarkably easier. For a complete walkthrough on setting up CrossLoop, continue reading.

You say that you don’t know anyone with the tech savvy to help you? Well, in that case CrossLoop has way to connect you with someone who can — and you will pay a service fee, of course. Even so, it’s got to be easier than hauling your computer in to a place for service or having someone local come to your home and spend hours trying to figure out what’s wrong.
I have been using a similar fee-for-service for years. It’s much less expensive, and I’ve never been disappointed.
(I know, you would think that I could hook up with my son b!X remotely through CrossLoop. But he’s a Mac person, and I have a PC. And he’s not really a techie.)
For non-techie computer users like me, a program like CrossLoop can save you a lot of aggravation trying to figure out, for example, why your Microsoft Word program keeps locking up.

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.

a witch by a nose

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witch.jpg

One of the distinguishing characteristics of the Halloween witch is that bump on her nose. Well, not only do I have one; I have three. I guess that makes me officially a witch.
The dermatologist says they are “fibromas,” which are benign kinds of tumors. Mine are under the skin, and so they are not really noticeable. I can have them “sliced off” (the doctor’s words), but insurances don’t pay for that because that’s considered a cosmetic procedure. He says it’s not a big deal to take them off, or out, or whatever they do to remove them. (But he’ll have to cut the skin, so how is that not a big deal??)
When I first got them (one ages ago, one six months ago, and one last month) I thought that they were sebaceous cysts, and so I put hot compresses on them and they eventually diminished in size, but they never went away.
At the moment, they don’t bother me, but I know they’re there. I can feel them.
I can’t worry about them now, however. In two days I’m leaving to head out to Massachusetts for my grandson’s sixth birthday, and I’m going to stay over at least three nights.
So it will be just my brother and mother. The hospice nurse suggested a change in my mother’s medication, so we’re going to try that. Her extreme anxiety is overwhelming her. And us too. I guess it’s her dementia getting worse. Between that and her increasing aches and pains, it makes it almost impossible to interact meaningfully with her. It’s like trying to take care of a sick toddler.
I often wish I really were a witch so I could get on my broom and fly away.

turn water into gasoline?

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When I bought my non-hybrid 2008 Ford Escape, I just couldn’t resist all the bells and whistles I got on this demo model. I had thought about a hybrid. But the wait was long and my old Subaru would consistently refuse to start, and no one, including the dealer, could figure out how to fix the problem.
Anyway, here I am with a car that averages 22 miles a gallon at a time when gas prices are spiraling and the only place I don’t have to drive to get to is the mailbox.
So, I get on the Net and google “turn gas engine into hybrid.”
And, guess what! There is a way to do that. And, supposedly, it’s not a big deal. Many sites advocate just doing it yourself with stuff you can buy at the hardware store, but that just seems like a dangerous way to do it. Suppose you ruin the engine you have.
The smart thing to do, it seems to me, is buy something already manufactured to do the job. The best site I found about using water to turn a gas engine into a hybrid is “fuelfromh2o.”
This is how they explain the process:

The process is as follows, you start with water and an electrolyte NaHCo3 [Sodium Bicarbonate]. You add DC current, the H2o breaks down into H2 & O [we just call it HHO]. We introduce it into the engine by use of the engines vacuum. The HHO combines with the gasoline and air in the combustion chamber and is burnt. Once burnt, it converts back to H20 [water]. Its now going to absorb the inner heat from the engine normally at 350 – 400*F and turn into super heated steam. Then its pushed out during the exhaust stroke and out the tail pipe. There it condenses back into to water vapor and eventually collects back into water. So you start with water and end with water.

So what are our results, first and foremost a really odorless exhaust. Lowered Co2 emissions, NO2 emissions go almost to 0, In short the exhaust emissions drop off the scale as you know them and you produce water vapor from your vehicles tailpipe. Why vapor instead of water??? Because the hydrocarbon fuel [gasoline] produces enough heat during combustion to keep the burnt HHO in a water vapor state, so it will totally condense into water outside of the exhaust system [eliminating any internal corrosion].


OK, I think. If it’s that easy, why isn’t everyone running out to buy what they call an “HHO Generator?”
Well, one reason, is that it’s not that cheap. Another, I suppose, is that most people, like me, don’t want to fool around and try to install something like this themselves. The smart thing would be to have someone do it who knows what he/she is doing.
I go to their list of distributors. There aren’t any near enough to make it possible for me to go there to have a HHO generator installed.
It does seem like such a good idea! Why isn’t the reality more widespread?
As the fuelfromh2o site says:

This technology has been around since the middle 1800’s. YEAH THATS RIGHT!!! Back before the take off of the industrial revolution and the real use of oil and coal to power our factories and vehicles. But oil and coal was easier technology and easily found and CHEAP. GUESS WHAT “NOT ANY MORE”! So if you could gain performance, better fuel efficiency, smaller bills at the gas pump. WOULD YOU DO IT??? Whether you purchase our HHO units or go to a competitor’s store or website and purchase theirs. Just as long as you the consumer realize that you have been methodically led into a money pit concerning energy and fuel.

SO NOW, WHAT ARE YOU GOING TO DO ABOUT IT???

I would love to do something. Anyone have any suggestions??

kitty corner

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kittycorner.jpg

As I’m cleaning out old files, I found an old receipt from the vets with my cat’s age on it. (I’ve been trying to remember when I rescued her from the tiny pet store cage in which she could only sit in her litter.) As far as I can figure, she’s almost 12 years old. For a fat old cat, she sure is doing well.
Because I’m anticipating moving her with me when I finally get to my daughter’s, I invested in a large carpeted “house” for her litter box. If I had known that it weighs 50 pounds (the inside is melamine), I might not have ordered it. On the other hand, maybe I would have, since it also works beautifully as another sunny window perch for her.
My mom, who is older than my cat in cat-years, is not doing so well. She seems to only be able to stay awake for a couple of hours at a time. She often doesn’t eat unless one of us feeds her. The hospice nurse is stopping in today, but I doubt if there’s anything she can tell us that we don’t already know.
The only time I seem to get outside for any sun shine is when I go out to tend my kitty corner garden. For lack of any other place to put it that wasn’t overgrown with weeds, I tucked it into the space between the driveway and the woods. It’s not perfect, but what is.
hers.jpg

Not even my grandson is perfect, although he’s close. He can’t be bothered to put on matching socks in the morning, but, as my daughter relates on her blog:
Our big brained boy wanted to know yesterday how the first person ever born was, well, born — because if he/she were the first, how could they be if every person born was only born after the mother before them was born (this child is only turning 6 next weekend, btw).
So there I was, having to launch into a succinct, but thorough explanation of evolution from slimy muck to Man.