Category Archives: getting older

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.

seeing circles

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The poem below by Billy Collins (one of Jim Culleny’s daily poetry emails) makes me sad and angry and wistful and hungry.
I’m not hungry for sweets. I surely eat enough of those.

Rather it’s a soul-deep hunger for the solitude to watch circles become salt, to reach for and conjure the words that make magic of metaphor.

And so I am angry that with each passing year I have had to move farther and farther from that place where destiny can be designed. And I am sad because those years can never be recovered. And I am wistful, finally, because that is what comes of and with age and the utter exhaustion of being someone else’s keeper.

Design
Billy Collins
I pour a coating of salt on the table
and make a circle in it with my finger.
This is the cycle of life
I say to no one.
This is the wheel of fortune,
the arctic circle.
This is the ring of Kerry
and the white rose of Tralee
I say to the ghosts of my family,
the dead fathers,
the aunt who drowned,
my unborn brothers and sisters,
my unborn children.
This is the sun with its glittering spokes
and the bitter moon.
This is the absolute circle of geometry
I say to the crack in the wall,
to the birds who cross the window.
This is the wheel I just invented
to roll through the rest of my life
I say
touching my finger to my tongue.

I had the last word

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Who doesn’t like having the last word, and this time it was mine at the end of Ronni Bennett’s great essay on elderboggers, Put It In Writing, published today in the Wall Street Journal. You can’t get to the essay online, so Ronnie had to send it in an email to those of us she mentioned in case we don’t subscribe to the newspaper, which I don’t.
Interestingly enough, the Journal began the printed version of Ronni’s essay with a quote from my quote. So, here I am, the alpha and the omega.
On Ronni’s blog, Time Goes By, she mentions the essay and shows the great graphic that the newspaper included.
Ronni will be having occasional articles on aging and retirement for the Wall Street Journal from now on. Congratulations, Ronni.
And thanks for giving me the last word.

I blog to connect with the world outside myself
that I’m trying to make sense of.
I blog to keep up my spirit;
to stir the spirit of others;
to stir my blood, my brain and my beliefs.

ADDENDUM: I discovered that you can read the whole great article by going here and then clicking on the story title, “Put it in Writing.”

nostalgia runs rampant

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I’m caught up in a wash of nostalgia these days, with friends I haven’t been in contact for a long while emailing photos with messages saying “Were we ever that young?”
And so this poem, one of Jim Culleny‘s dailies, reminds me of just how young I once was and how much has happened since.

In Memory of Radio
Amiri Baraka
Who has ever stopped to think of the divinity of Lamont Cranston?
(Only jack Kerouac, that I know of: & me.
The rest of you probably had on WCBS and Kate Smith,
Or something equally unattractive.)
What can I say?
It is better to have loved and lost
Than to put linoleum in your living rooms?
Am I a sage or something?
Mandrake’s hypnotic gesture of the week?
(Remember, I do not have the healing powers of Oral Roberts…
I cannot, like F. J. Sheen, tell you how to get saved & rich!
I cannot even order you to the gaschamber satori like Hitler or Goddy Knight)
& love is an evil word.
Turn it backwards/see, see what I mean?
An evol word. & besides
who understands it?
I certainly wouldn’t like to go out on that kind of limb.
Saturday mornings we listened to the Red Lantern & his undersea folk.
At 11, Let’s Pretend
& we did
& I, the poet, still do. Thank God!
What was it he used to say (after the transformation when he was safe
& invisible & the unbelievers couldn’t throw stones?) “Heh, heh, heh.
Who knows what evil lurks in the hearts of men? The Shadow knows.”
O, yes he does
O, yes he does
An evil word it is,
This Love.

he can’t go home again

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Myrln fidgets in the hospital bed in the emergency room, where they have him hooked up to various machines that beep and chime and whir.
“I just wanted a few more days. I needed a few more days. I needed time to think….” He looks at me with eyes angry and sad at the same time. He is back in the hospital after only two days at home from a week-long stay for tests and such. I have been with him for the past 36 hours, including this morning when we had to call a Rescue Ambulance because he couldn’t breathe, even with an oxygen tank.
We have been divorced now for twice as many years as we were married. But time had healed our wounds and we had developed a friendly relationship.
“I will be eternally grateful,” he wheezes, “for all you are doing for me now.”
My eyes fill with tears. “No problem,” I say.
“I have to tell you something,” he says. “Even through it all, there was always a little love left.”
“Yes,” I say. “Me too.”
And I’m crying and we are holding hands the way we once did long before I begged him to stop smoking.
Tonight he is temporarily hooked up to a respirator. b!X arrived from Oregon, and his sister and family from Massachusetts. He has not yet been awake for b!X and him to have a little time together. I hope he wakes, for both their sakes.
Meanwhile, I am back on the mountain with my mother, but I suspect will be be leaving again in a day or so.
They will take him off the respirator. He will either breathe or not. Either way, he won’t be going home again.
Myrln, who once blogged here on Mondays, is my former spouse, the father of my children. He has inoperable lung cancer, which has spread to just about every vital organ.

in good company

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Deborah Harry (that’s Debbie Harry of Blondie), now 62 years old, proudly sports a swath of gray hair.
And, according to Ronni at Time Goes By, a bunch of gray-haireds who are my kind of people are rocking Northampton Massachusetts:

YouTube has the movie trailer and a whole lot more music video clips. These will get you up and moving, and reminded that you’re never too old to rock ‘n’ roll.

Just watch them offer their rendition of Donna Summer’s “I Will Survive.”

is that the way it was done?

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Is that the way it was done before nursing homes and hospices, before miracle drugs and transplants, when old folks died slowly at home, their sons and daughters and grandchildren and cousins all taking turns taking care? The frail old ones, dying only from the final stresses of age and gravity, moved slowly and silently, sleeping through most of those last months, last weeks, last days. Relatives came and went, stayed and shared, while the old ones slept and dreamed and waited, and that was the way it was finally done.
But there are only two of us here to keep watch, to take care. Each day she is more tired, asks to sleep more and more often. Awake, she sits sad and silent, eating slowly in front of the television that she can barely hear anyway. I sometimes still hold her and dance with her late at night, when she’s afraid and won’t sleep. Sometimes I sleep with her to make her feel safe. Sometimes, no matter what we do, she’s up and down all night, wants to eat, wants to go home. “Please, please,” she mutters, unable to tell me what exactly would please her.
Someone cracked my rear passenger side bumper, and I have to go and get an estimate so that I can get it fixed. But then what. My brother would have to get my mother in his car and come with me to drop off (and then pick up) my car from the body shop. It is hard to believe that we know no one around here who can help with that chore so that we wouldn’t have to put my mother through that. I don’t even think that there are taxis in this little town. At least I’ve never seen any. I think I’d better start checking that out.
This is not the way it’s supposed to be done — without friends, without extended family, without a support system. But this is the way my brother insists, and I am too tired to argue any more.
I’d better check the phone book for taxi services.
And I’m still purging and packing and planning. While I cook, and feed, and clean, and sit, and hold, and hope.
ADDENDUM:
Whaddya know. There IS a taxi service right in town! Family or friends would be better, but I’ll settle for a taxi when it comes to getting my car fixed.

going gray

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Soon after every birthday, I take a photo of myself. My 68th birthday was last Tuesday, and here I am, way past the time when I would normally touch up my hair color. I’ve begun to go gray:
68.jpg
I took this photo with a new webcam that I just hooked up so that I can video conference with my grandson, who will soon get, from me, one of those indestructible XO laptops that are no longer available for private purchase. It comes equipped with a webcam. In order to buy one for him, I had to buy one for a child in a 3rd world country.
I went to visit my kindergartener grandson and family last Sunday, and I’m sure that, as a result, I have a few more gray hairs. By the time I left on Tuesday, both my daughter and grandson were seriously sick with sinus infections and the construction of a second floor had begun on their home. After I left, the workers had accidentally put two sizable holes in their first floor ceiling, letting the cold in and further endangering their health. You can read about the fiasco on my daughter’s blog.
I wish I could have stayed to help out. My son-in-law has his hands full. He even had to take time off from work because my daughter now has laryngitis and can’t talk at all. Just imagine how that works out with a chatty 5-year old.
Ah, if only there were such a thing as a Star Trek Transporter.

Hillary be damned

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I think that Hillary Clinton would be damned by public opinion no matter how she ran her campaign. If she had Barack’s eloquence, charm, and public persona, she would have been damned for being to theatrical, too smooth, not tough enough etc. etc. Oh yes, she’s made too many mistakes in her campaign, but I don’t think that’s the reason there’s so much animosity toward her.
Many American’s love the idea of good vs. evil, the bad vs. the good, and they’ve been handed a perfect opportunity to set up a METAPHORICAL (not racial) black vs. white battle. No grays here (except creeping in on Hillary’s battered head.)
And, despite all of the backlash against Ferraro, I believe that if a white male with Barack’s change agenda AND LACK OF EXPERIENCE were running, he wouldn’t have made it this far.
Oh, wait a minute. A white male with Barack’s change agenda AND CONSIDERABLE EXPERIENCE was running and didn’t make it.
Perhaps what it all just means is the time is right for someone like Barack — a moving, persuasive orator, a symbol of radical change from the status quo (symbolized by his bi-racial ethnicity), someone from a new generation who appeals to the new generation. If he could be canonized by us liberals, he would be called Saint Barack, patron saint of idealists.
So often, timing is everything. And, as we saw on Ellen, Barack’s got the timing down pat.
And late middle-aged, thick waisted, experienced, tough broad Hillary be damned.
But not by me.

signs

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When she flutters her hands in front of her nose, I know that she needs a Kleenex (well, we use Puffs because they’re softer on her nose). When she taps her teeth, I know that she wants her flosser. When she reaches out with her right hand and opens and closes her fist, I know that she wants her cane.
She doesn’t always use her self-devised sign language, but she’s tending to do it more often — especially when she’s tired. And she seems to be tired more and more. The signs are often there. The words are often not.
On a sunny day last week, when I got into my car to go to the drug store, I flipped down the visor mirror to check for any stray chin hairs that my Tweeze might have missed. No chin hair — but what’s that??? Long white hairs in my eyebrows??? Now there’s a sign. Definitely a sign.
I’m not sleeping well, my reflux is acting up, and that contact dermatitis I get on my elbow every once in a while is itching like crazy. I can’t ignore the signs.
Signs that I need a break. I need a couple of days away from here. And so I’m going to my daughter’s from Sunday to Tuesday. It’s my birthday present to myself.
In two years I’ll be 70. It just doesn’t seem real to me.
Maybe it will seem real when my natural hair color finally grows in. Then I will see the most obvious of all signs — the gray signs of being where I am in life.
Each year, on my birthday, I take a photo of myself. Each year, the signs are more obvious — the drooping jaw, the sagging chin. There won’t be much of the gray hair visible when I take this year’s photo. But next year, there will be no denying that sign of this life fading to pale.
If I were able to live my life at the age I am today in the way I would prefer, I wouldn’t be obsessing so much on my age and what I am losing with each day that passes.
But here I am, watching for signs and missing those times when the only sign I looked for was the one that said “dancing until 2 a.m.”