Category Archives: family

The Deathwatch Diary (One)

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My mother’s room looks out over a roof with the HVAC and other protuberances. But over the left corner of it all, I can see the Hudson River and the Palisades. I can see it, but my 94 year-old mother can’t.

Day by day, she grows smaller in the hospital bed on the oncology floor with the patients who are at the point at which “Comfort Care” is their last best option. My mother doesn’t have cancer, but, with advanced dementia (can’t swallow) and renal failure, “Comfort Care” is her last option as well, and this is the best place for her in this hospital. (At least I think so; my brother doesn’t agree.)

I have blogged about my mother’s condition before, and you can read those posts by searching this blog for “dementia” and/or “caregiving.”

For the past ten years (which, not coincidentally, is when I began this blog) my brother and I have disagreed about the effects on my mother of her journey into dementia. What he insisted was her usual stubbornness and feistiness, I believed, from my own research, was that insidious deterioration that had begun in her brain and would end just where it is ending. I had read The 36-Hour Day, I logged onto online forums on the subject of symptoms and care. I subscribed to Care ADvantage magazine to get tips on what to look for and how to help her manage the changes I could see in her behavior and her perceptions of what was going on around her.

My brother and I brought our mother to the emergency room last Sunday, after she had refused to eat or drink for several days, was obviously dehydrated, and had begun to tune out the world. In retrospect, perhaps we should have let nature take its course, and she might have simply gone to sleep at some point and never woke up. But she seemed in severe distress — couldn’t find a comfortable position to lie or sit in, and finally, unsuccessfully, tried to sleep sitting up. She had stopped communicating and kept rubbing her legs. We couldn’t tell if she were suffering, and so we took her to the hospital,

She is sedated, now, as “comfortable” as possible during this time when her body is shutting down. Her awareness already has, except for brief and seldom moments when she is physically disturbed and then responds with wide-open, red-rimmed eyes and an unearthly howl that resonates with a primal fear.

I have slept in her hospital room every night since she was admitted last Monday, listening to her labored breaths and getting up to check her when her breathing stops for several seconds at a time. When my brother comes to stay with her during the day, I take some time and slip away to shower, change my clothes, eat something other than hospital cafeteria food, walk in the crisp fall sunshine. The time drags while I am sitting in that room with a partial view, and so I knit, read, play games on my iphone, check in with FaceBook and my son’s Twitter, check my email.

But this isn’t about me.

Or is it?

liberals understand learning:
Rally to Restore Sanity

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“Where Have All the Liberals Gone?” asks this site and answers that they’ve renamed themselves “progressives” and are doomed.

I still call myself a “liberal,” and, if the televised Rally to Restore Sanity were any indication, there are a lot of concerned people like me out there (“CBS, which hired professional crowd-counters, put the number at 215,000“), despite the efforts of some to write the event off as mere “entertainment.” Every good teacher knows that education works best when it’s “entertaining” — as the MythBusters specifically demonstrated.

Liberals seem more likely to understand how real learning takes place, and even my 8 year old grandson got the message when he commented, as Ozzy and Yusef walked off the stage arm-in-arm: “Finally, they agree on something.”

I wonder how many of us liberals couldn’t make it to the rally but were watching on television. Lots of us, I’ll bet. Even though the event probably wound up teaching to the choir, it nevertheless, through technology, will stay out there in the internets for anyone curious enough and open enough to learn something new.

Meanwhile, we liberals will go out and vote tomorrow. We will teach our kids and grandkids by example and shared experience. Some, like my daughter, home school and share their successes with others. Some, like me, blog. Most of us just live our lives by the values we hold dear: tolerance, equality, free speech, peace, accountability, transparency AND most important, education: learning that takes place every day because we encourage curiosity, creativity, and active participation.

If it turns out that reactionaries win this election, we will still be out here, “teaching” our values in ways that are most effective and meaningful.

sweetgrass coolie hat

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It’s somewhere in the mid 1940s and I am somewhere around 7 years old. It’s somewhere on a summer-crowded Long Island beach, onto which a caravan of my relatives descend every weekend.

Under the striped beach umbrella on a sand-dusted threadbare blanket, I lie on my side, my face buried in the mown-hay smell of a sweetgrass coolie hat. I am lulled by the soughing surf, the surround of soft talkings, the salt-stung breeze, and the brain-sticking smells of sun lotion, sweat, and sweetgrass. I want the moment to last forever.

It is a hot yesterday, and I am sitting in the dappled shade at a pond where we take my grandson to play. I close my eyes and conjure the senses of childhood from the splashes and chatters that drift my way across the busy sand. And I yearn for the smell of a sweetgrass coolie hat.

I am a victim of elder abuse

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from “Elder Abuse and Neglect”:

In emotional or psychological senior abuse, people speak to or treat elderly persons in ways that cause emotional pain or distress.

Verbal forms of emotional elder abuse include

* intimidation through yelling or threats
* humiliation and ridicule
* habitual blaming or scapegoating

Nonverbal psychological elder abuse can take the form of

* ignoring the elderly person
* isolating an elder from friends or activities
* terrorizing or menacing the elderly person

OMG. There it is. That’s why I moved out from living with my brother and trying to take care of my mom who still lives there. I kept trying to tell him to stop, but he just kept on. I’m an elder, and that’s abuse.

And now I have to figure out how to get my mom away from him because, at 94 and with dementia and a slate of physical problems, she can’t just move out the way I did.

Boy, did I make a series of bad choices as I tried to be my mom’s caregiver. I’ve been trying to remedy my situation since, and now I have to figure out how to remedy hers.

What I find really interesting is that, while I was on an anti-depressant, I never got mad enough to fight back no-holds-barred. Now I’m off the drug and I’m really mad. And I’m fighting back.

day 3 of dementia immersion

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She tries to comb her hair with her toothbrush and brush her teeth with her comb. That’s pretty much a metaphor for where my mom’s mind is. And this is my 3rd day here with her and my brother, trying to ignore his rants against my caregiving “techniques” while keeping my spirits up so that I can be of best use to my mom.

Every once in a while she does have a lucid moment. Soon after I arrived, she looked at me, smiled, and then started to cry “I’m so happy happy to see you!!” Several minutes later she asked me “What is your name?”

Sometimes she calls me “Pani,” which is the Polish equivalent of “Mrs.” In those cases she knows I’m someone who helps to take care of her but forgets who I am. Sometimes she calls me “ciocia,” which means “aunt” in Polish, and she thinks I am one of her many aunts (all long gone) whom she knew as a child. Sometimes she hugs me and says “You are my mother.”

But mostly she vocalizes quick pants of “a ah, a ah, a ah….” for hours on end, refusing to take even a tylenol.

I am only here for a while once a month. My brother, who has CONTROL but no real self-control, keeps her with him and does the best he can by himself. They both need more help, but he won’t bring any in.

I’m doing my best to keep my reflux and back spasms under control. How long I last here depends….

I keep reminding myself that she won’t live forever, even if right now it sure feels like it.

While she’s napping, I’m going to wash my hair.

Delayed Gratification

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We were supposed to leave for Maine today, but my grandson had a stomach bug and fever yesterday. He seems fine today, but we gave him another day home just to make sure.

It’s been a while since any of us have been able to go away for a whole week, and we are all looking forward to the ocean and the nature preserves and the deck on our cottage that looks out over an estuary. My grandson and his dad will fish, and my daughter and I will just veg out.

Time is passing too quickly for my liking and taking with it too much of the physical capacities I’ve always taken for granted. Degenerative disc disease is not uncommon for people my age, but mine is worse than normal. There’s not much I can do at this point — eat healthy, stretch….

I remember that my mother had a chinning bar attached near the top of an open doorway, and she would hang from it by her hands several times a day. I think it helped a lot with her spinal problems, and now I have one here. When I hang from it, I often can hear the pops of my spine decompressing.

I spent a little time online last night searching for ways to decompress the spine. Hanging by your hands from a bar is one of them — one of the least expensive and easy to use.

I am lazy and things I wanted and/or wanted to do always came easy to me. Notice I said “things I wanted.” Maybe I didn’t want the things I didn’t want because they didn’t come easy to me.

I was never one to delay gratification — whether it was eating chocolate or buying a new pair of jeans. This is something I am learning to tolerate now in my elder years.

I think of my dementia-plagued mom, who seems to be able to be gratified by so little — a globular gourmet lollipop that she can suck on for hours, a simple song that I make up as I go along.

Tomorrow, Maine, and some gratification for me. In another few weeks, I make the journey to try to give my mother some little gratification. (I wish I could take another vacation after that!)

Meanwhile, I am continuing to see a chiropractor for thoracic spine therapy, since the muscles are still pretty sore and in spasm from my fall off the bed at my mother’s a little over a month ago.

I will probably never delight in Salsa dancing again. And that’s too bad, because I always found the movements and the music very gratifying.

singing mom to sleep

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My mom lives more than 160 miles from me. She is 94 with severe dementia.

When I go and stay with her (about once a month) I sing to her, old songs that she might recognize — “Over the Rainbow,” “My Favorite Things,” “Try to Remember,” “When the red red robin comes bob bob bobbin along…..” I have a below average singing voice, but my singing seems to calm her down.

Tonight, 160 miles away, she wouldn’t calm down, and my brother was at his wit’s end. So I started singing to her over the telephone, and it worked. Now I have to figure out how to record some of those songs and burn them on a disk or get them onto an mp3 player so that I can send them to her — a medley of old songs to ease the demented mind.

Hey, whatever works.

Memorial Day is for the Dead

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I invite you to link here and read my son’s post, entitled as above, which begins thusly:

It says so right on the tin: “[Memorial Day] commemorates U.S. soldiers who died while in the military service”.

The key word in all of this is “died”, not “served” or, for that matter, “serves”. This day isn’t for anyone who ever found themselves in the military of the United States, or for those who find themselves there today. None of these truths dishonors living veterans (who have a day) or active duty personnel.

Death is different. Death is singular. Death is separate. Death is final. The point is to set aside a day in which we remember those whose service took them all the way past that final line. Whether or not they died for a just cause, they died in our name……..cont’d

And while I’m on the subject, I offer for your illuminination Mark Twain’s “War Prayer.”

a sad shoe story

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Magpie Tales features a weekly visual writing prompt, and this is my response to Magpie #16. Click here for more.

shoes

I sit on the floor and massage her bony feet, carefully avoiding the hammertoe and bunion that distort her right foot, although both bear assorted signs of 94 years of wear. How she once loved her stash of Ferragamo pumps — slim pointy toes, even slimmer curved heels. In high school, as the size of my feet caught up to hers, I would jam my feet into those Cinderella slippers, wondering if the price of pinch and pain was worth it. Decades have gone by since she chose to suffer for style and status, and those Ferragamos have long since gone to Goodwill. She has no choice now but to shuffle in soft slippers, her frivolous fling with vanity long forgotten. I sit cross-legged and barefoot on the floor and massage her hurting feet, delighting in my straight and polished toes and thankful that I had the good sense to choose otherwise.

a Mother’s Day repost

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On Mother’s Day for the past several years, I have reposted the following message to my two, now grown, offspring. I wouldn’t be a mother without them, after all, and I wish I had been a better one, after all.

Some women take to mothering naturally. I had to work at it. And so I wasn’t the best mother in the world. I would have worked outside the home whether I had become a single mom or not. And because I did, mine were latchkey kids, with my daughter, beginning at age 12, taking care of her younger brother, age 5, after school. I left them some evenings to go out on dates. Oh, I did cook them healthy meals, and even cookies sometimes. I made their Halloween costumes and went to all parent events at their schools. My daughter took ballet lessons, belonged to 4H (but I got kicked out as Assistant Leader because I wouldn’t salute the flag during the Vietnam War). I made my son a Dr. Who scarf and took him to Dr. Who fan events. I bought him lots of comic books, invited friends over to play, and taught him how to throw a ball.

But most of all, I think/hope I did for them what my mother was never able to do for me, — give them the freedom and encouragement to become who they wanted to be — to explore, make mistakes, and search for their bliss. I think/hope that I always let them know that, as far as I was concerned, I loved them just the way they were/are.

Not having had that affirmation from my mother still affects my relationship with her. I hope that my doing that right for them neutralizes all the wrong things I did as they were growing up.

So, you two (now adult) kids, here’s to you both. You keep me thinking, you keep me informed, you keep me honest, and, in many ways, you keep me vital. I’m so glad that I’m your mother.

So, in memory of those not-always-good ol’ days that you two somehow managed to survive with style, here you are, playing “air guitar and drums” — enjoying each other’s company sometime in the late 70s and bringing so much delight into my life.

70skids