Just my take on

THE CONTINUING WEIRDNESS OF EVERYTHING
MARCH 10, 2012 2:39PM

To the Caregivers: You are Fully Human

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Because I have long lived in the same town as my elderly parents, most of the caregiving responsibilities have fallen to me.  Still, my sister was a great help to me in caring for our father when he was alive, and is even more present now as our mother moves further and further away from us.  Her medical expertise has saved both our parents' lives more than once these past several years of hospital visits.  (My sister and brother-in-law:  eight;  hospitalists:  zero.)  She is always thanking me and doing nice things for me--visits to spas, trips to Europe--things that make the stress of caregiving disappear if only for a while.  We both do what we can do and give what we can give.

I'm not caring for our mother at home anymore--she's in the Alzheimer's section of an assisted living place.  Still, most days now I feel like Sisyphus.  It takes a crazy kind of strength even to get out of bed, to try to hold my life, and her life, together.  But yesterday my beautiful sister emailed an article to me.  In her message she wrote, "You are fully human.  (You'll understand after you read this.)"  It's the nicest thing anyone has ever said to me.

I know there are so many people on OS (and beyond) who are in different stages of shouldering similar responsibilities, and not just with elderly parents, either.  I want to share with you this message of grace, with hope that it brings a new meaning to what you do.

 http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(09)60087-8/fulltext

With love,

TGD

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My brother Rick and I shared the responsibility of managing the care for our Mom and Dad, but Rick carried and still caries most of that on his shoulders. Last year when our older brother Bill got too far along in his dementia, it fell on me to take over his affairs. You have my abiding empathy and respect. Thanks for the link.
This is a week with lots of memories. Two years since mom died. Mrs. is with her step dad now.
I understand.
Back atcha, jmac.
AKA, thinking of you, hoping the memories lift you up.
have to save this one somewhere. It's got me in tears now, but it's wonderful.
thank you for sharing it
Julie--my exact reaction. Thank you.
Thank you for sharing this essay, GD. As you well know, I am my mom's caregiver. Very moving.
This is something I have been investing time and energy in lately. My mother-in-law has really went down this last year, and she has one daughter who refuses to see that she is unable to care for herself. She even took her and got her driver's license. She get's lost constantly and I'm afraid she's going to hurt someone. This is coming to a head and I am not "blood". But I can call the Dept. of Transportation. If she kills someone driving, or herself, I couldn't live with myself. Great Post!
I made the decision almost 3 years ago to live with my 81 year old mom. It was the only option I thought served the greater need so I can't say I would have taken a different road. Still, to have the freedom to, hmmm...
Thank you very much. It is quite a journey for us all.
Thank you.
My experience is of course different but there are things about this that are very true about me, particularly about learning as you go. I have not had to put up with the horrible sadness of deterioration, of losing someone in slow motion that I cared for on a daily basis. Yes, I've had grandparents with Alzheimers, but they weren't my responsibility and I wasn't with them often enough for it to be this awful an experience. I so sympathize with the man who wrote this article because, for him as for others caring for the elderly, care is a process of loss.

My loss, as you know, was sudden, but my care was, if anything, more comprehensive, and it went on for longer. Hand feeding, hand changing, lifting, positioning, bathing, etc. The worries were different, worries about the future (as all worries are) but of what I assumed was a much longer future.

As difficult as it was, my care receiver was all there. That helped. More than helped, really; that made it worthwhile. An odd thing to say, because I don't have experience providing serious care for someone who isn't all there, but it did make it worthwhile for me. And, absolutely, for caregivers we'd hire for when I was working or we needed a break - many over the years grew remarkably attached. Which, under the circumstances, really wasn't surprising.

At the time, and this is something I think a lot of people don't get, it was not a sad process. What wasn't currently possible was, for most of the duration, beside the point.
The Good Daughter,

What a beautiful gift from your sister! It's such a moving story.

I was the only caregiver for my mother when she had cancer. I took care of her from my freshman year of high school until she died during my senior year. This brings back a flood of memories from that time right before she died. As I look back on that time now, I am so glad that I was there for her, and I wouldn't change a thing.
I am an only child caring for my almost 98 yr. old mother at home with my husband. She's in the late stage of dementia and recovering from hip surgery. It's really hard, even though we have hired aides about 50 hrs./wk. It's frustrating watching her sleep too much, eat nothing, drink 1 cup in 2 hrs. (dribbling down her chin), have toileting accidents, do less and less for herself and know so little. It hurts to see her go downhill slowly, when we rehabilitated her so much the first 2+ yrs. she was with us. That's life, though, and I know it would be even harder in a nursing home.
I'm coming back to everyone later--the only reason I'm here is that I forgot where Ring Dance is tonight, and I promised my student's I'd go--but I just HAVE to tell jackie2 I know, I know, in my mind I'm hugging you and stroking your hair and tellling you you're doing fine, you're doing more than fine, more than anyone ever thought was possible. I never imagined such a tremendous physical and emotional struggle was possible or would even be necessary. Love yourself for what you do, because "the universe" does. And most important, whether it ever seems to be true, your mother does.
My sister did most of this for our mom but I was there and watching and I only have the utmost respect for all caregivers. It is the hardest thing in the world to watch the one you love disintegrate in front of your eyes.
Caregiving is often exhausting and frustration but "caregiving is also a defining moral practice." Yes. Something that breaks us open to let unforeseen things both in an out of our deeper selves.
I totally relate to feeling like Sisyphus. I bet you will always strive to do the right thing, and I'm sure it is too hard sometimes . Mad props and warmest wishes to you as you go through these STRUGGLES, dear Good daughter. xo

Off to check out that link.
A beautiful article, I'm definitely bookmarking it. Fully human, yes.
When I think about my Nannie and the care she received in her last years, I explicitly thank the CNA's (who are paid shit for really shitty work) and the other nursing home staff that made her final years less of a hell than they could have been. She was to the point, medically, where we couldn't keep her at home and we depended upon them...and for the most part they came through. It's still sad that we pay the folks who care for our most vulnerable (our children and our elderly) so poorly. It's not proportional to the value of their work.
Powerful. Thanks for passing that along!
Sentimental and beautifully humane; you are a good daughter. R
Beautiful on all counts. What a good daughter you are. Bless all you.
Oh, my, here I am sneaking back here at work.

Erika, yes, one day at a time.

Scanner, I filled out a form and sent it to the Dept. of Motor Vehicles after my mom had an accident. They made her come in for a driving test. Imagine my shock when the tester said she'd drive anywhere (except the interstate) with my mom. Then her driving ultimately pittered off. But I felt no guilt after that. They did not tell her who ratted her out, either. :-)

asia rein, bless you. It's the right road, yes, but a rocky, twisty-turny, increasingly difficult road (as you know). I hope you get some time to care for yourself.

Linnnn, yes, and I love how the author defines so clearly the gift we receive along the way.

kosh--the article made me think specifically of you, living through an experience so different and yet so similar. I've wondered sometimes how different things might be for me if my mother (and father when he was alive) was more herself. The continual loss of HER is the real killer--memories made back then vs. memories being made now.

Hopeful--what you went through at such a tender age! Talk about a good daughter! I'm so sorry for your loss.

LL2, "disintegrate" is the perfect word.

Donegal, I love your definition. I'm writing that down.

Fernsy, l'Heure Bleue, Karen, thank you.

BV, you are so right. So, so right. Sometimes I get enraged over it. The place where my mom lives has been redecorated twice in 2-1/2 years, but the CNAs and other staff who work with the Alzheimer's patients still make only around 8 or 9 dollars an hour. All I can do is tell the director how great they are and that they deserve a raise. My experience with nursing homes (my dad was in two) was absolutely horrible. Painful. Remembering it makes me furious and then I cry. One young woman, though, did bring my father a half peanut butter and jelly sandwich most days. She was a bitch most of the time, but she did do that, bless her.

Thoth, Desdamona, thank you for the kind words. I'm not special, just paying back. I'm very lucky that my parents were so wonderful; it makes all this easier.
Beautiful message. The line in the Lancet piece that says that we learn caregiving by doing? Well, yeah. That's how we learn parenting too.
Caregivers rule and so do you.
.........(¯`v´¯) (¯`v´¯)
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............... *•.¸.•* ♥⋆★•❥ Thanx & Smiles (ツ) & ♥ L☼√Ξ ☼ ♥
⋆───★•❥ ☼ .¸¸.•*`*•.♥
you are an amazing woman!
The Good Daughter,I feel like Sisyphus too...and I know what you mean..Thank you for writing this cause it made me more aware of my age..I am almost 40 and unlucky for me I have no children..If I had I wouldn't be such an obnoxious child..I would have grown uρ to a serious ρerson..and your article with this letter made me to see my age...Did my mother deserve me in my time of need;Νο...Can love desert;I think no..I get angry with my mother,I even get obnoxious and in the following second I just hate me...I think that ρarents are just the ones that we must have sense before feelings...One said that family is the house where the doors are always ορen..It is uρ to us whether hearts will be oρen too..My sister was with my mother for 22 years..while I was away..college..almost marriage..travelling..leasure..call it..My sister was here..And now it is my time to be here..And that is the right thing to do..I loved your writing cause it made me realize my resρonsibilities..And I am in need of a resρonsibility reminder..So..I thank you..Best regards..See you here..I rated you with feelings...
That is a wonderful article. Reading these posts makes me wish that I had been here years ago. I always felt I was the only one but I know now that there are so many daughters and sons a mothers and fathers and sisters and brothers that go through it too. Even though it's over for me with my mother and father and brother reading this and the article still helps. I try to remember that when I start feeling like and orphan. It just makes me feel less alone. (Sometimes my comments sound so pathetic, I really don't mean to.)
So many of us have our relative stories that this post makes a powerful connection. Strength and grace to you as you give care.
I never regretted caring for my Father.
I regretfully, against my better instinct,
began taking Dad to receive radiation.

I had researched the AMA approved radiation.
Some physicians said radiation in the Elderly?
It was the # one AMA approved medical sham.

I witnessed ambulances delivering folk on cots.
My opposition? Well, my objection was ignored.

My Father became to weak to walk to the my P.U..
He confided in me . . . "Well. I was healthier before."
I read that radiation may burn youthful tumor growth.

I still can remember those caring for him. He was Dad.
My Father taught me how to live. He taught how to die.
But, I don't wish for people to be at my bedside as I die.
My hand was on Dad's heart. His heart paused. Soared.
He called himself an old Elder Buzzard. I always . . .Sigh.
Thanks
Take care
Memories
`
I am back too late to respond to many--but I will PM you because your comments move me and give me a lifeline at a time when I foundering. It will be next week when I am on spring break, but I will tell you how touched I am by your empathy.
...and again...another blogger taken by the rapture....where the hell is everyone?