JANUARY 5, 2010 3:26AM

Open Call. Thank you, Sally Swift

Rate: 20 Flag

It's been a rough week.
Instead of working, as I should be,
I find myself here, clicking away the night.

And then I clicked Sally's post.
Read This! Then Decide WTF Is Really Important

I clicked through to the life and death post.
And there it was, about halfway down.
My complete undoing;

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."
Maya Angelou

I cried, then. Not tears, oh no, but
great heaving sobs that make no sound
at all, save for the intake of breath.

I am a caregiver.
If you've read my posts, you know.
If you've read "something to cry about" you know even more.

Within a 10 minute drive, I have 5 siblings. 5. 
Not a one willing to take Dad, even for a day.
They tell me they would understand if I gave up.
Threw in the towel. Put him in an institution.

His social worker tells me that the reason most elderly people with mental challenges go into an institution is not due to deterioration, but because of caregiver exhaustion. I understand that, too. 

Yet, I saw how he did in a facility.
Saw him curl up in the fetal position asking "who's there?"
when strangers came into his room. 
I couldn't leave him that way.  Couldn't.

In lucid moments, he tells me he would rather die than be put away
and forgotten, like all those other old people. It hurts my heart.

But, oh, I ache for solitude.
To rest. Body and mind.
For one day not spent serving meals every 3 hours.
For one night, blissfully slept all the way through, instead of
listening, listening for him in the hall, neither asleep nor awake.

I felt weak tonight.  Short of strength.
Lacking. Just lacking. As a human, somehow,
too tired to even keep myself together, much less work.

And there you were, Sally.
You made me feel strong, when I felt weakest.

If I may return the favor, at the end of your post, you said;
"Now it's your turn. Think positive. Please. Or, really, just STFU already."

So, I'm making this an open call to anyone that stumbles by. 

If someone on OS has picked up your spirits, please thank them. Out loud. Call it "Open Call. Thank you (name) "

Maybe we can get some good Karma into the feed for a while.

P.S.  I'll say a prayer for Karen.

Taking Dad Home

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This made me cry too. The breathtaking selfishness of your family. Damn them to hell anyway. I hate it that life is so unfair to people who try to do the right thing even if it is hard. YOU have lifted my spirits today. Thank you from the bottom of my heart. xoxo
Thank YOU for choosing to take on one of the most challenging, difficult (and most thankless) jobs and for expressing so eloquently what it does to your body and soul (while everyone else has a "normal" life). And thank you Sally for getting the ball rolling. Love to you both. xoxo
Caregiver exhaustion is real. What a beautiful heart you have for your father. You are a better person than most. Thanks for this post and another reminder of what's really important.
The heights of the human ability to love rise so far beyond the depths of the despair that gives us sorrow. We show that face to those we love.
I know the frustration when there are siblings nearby who aren't willing to help, but certainly not to this exhausting extent!! The first thing I did after I read this was to see if you have your town listed in your bio - I wish I could come over and help you, hun. You need a break and it is much deserved. You're an angel for caring for your dad, period.
I'll do it! So many people here have made me feel 10 feet tall so many times.

And hang in there, the people you're born to (as in siblings) aren't always the family you were meant to have.
Tears here. Thank you for this. Your father is lucky to have such a child, a child who would hear his heart and take him home. I hope for peace and rest for you.
I understand. Thank you for this.
You are the small miracle in his life. I don't know why your sibs are so afraid to take on some responsibility here, but you know what they say about relatives.

Is there any way you could get someone like Visiting Nurse service or Home Health and Hospice to come in for a day? Might be difficult but you need it.

Rated. Thinking of you and sending good thoughts and prayers.
My heart went out to you as I read this. Your courage and devotion to your father are admirable. I wonder do your siblings ever think of the consequences of their inaction, in terms of the destruction of your relationship to them and their own premature loss of a father who is still alive? As I commented on Sally's post, most of the griping here on OS is a waste of time but occasionally a post such as yours and Sally's describe circumstances so dire that they merit real anger and even bitterness. I cannot express the effect it has had upon to me to find in these posts a response that is actually grace and fortitude. Thank you and bless you.
Good on ye, boomer.

Fairness is for sissies, is America's New Top Motto. Take all you can get, then watch reality on TV.

Compassion is our birthright, obligation, sacred trust, curse, salvation, greatest reward. It is easy to be kind and to make sacrifices in in western, monied democracies, and I hope your siblings learn this.

I wish I could say there is an eternal reward. But here's is my virtual pastrami sandwich, this thick, on toasted rye, with a nice peach, and a pretend hour-long lunch, to eat it in leisure. Just for you.
I learned to care for my mother in my home 24/7 the last four years of her life by watching her care in her home for her mother crippled by arthritis and my dad ravaged by Alzheimer's Disease. For 17 years after my father died she was an Alzheimer group support leader and the Long Island legislative lobbyist for long-term care and Alzheimer's disease.

Please continue to write on this most important of subjects.
You can tell you are a good person by the way you care for your dad, and how you go out of your way to thank someone by name on an open forum such as this. Bravo, and best wishes.
Emma... thanks. i got 5 whole hours of sleep last night. Uninterrupted. Woohoo. lol

Cartouche... Funny how subjective "normal" is. ;)

maryt... what a nice thing for you to say. Thank you.

bobbot... some days, I think it's my unfailing need to do what's "right" more than love, but I guess it works out to the same thing maybe?

walkAwayHappy... What a very nice thing for you to say. Sometimes I think I complain too much, too. I try not to, though. I really hate the way complaining feels inside.

Outside Myself... I'm in NoWheresVille. lol. Had to move 2,000 miles to come back to the place I left long ago to care for Dad. No one lives here. lol

skeletnwmn... Mentally, I have a much smaller family than in blood, for sure.

C.K... Aww.. no need for tears. I poured at a weak moment. There's good ones too. Like, after sleep.

Kathy... I know you do. And thank you.

Bill... yes, indeed. I'm on a waiting list for public respite. Cross your fingers they call me soon!

psychomama... Funny, because I don't feel anger or bitterness, though they'd probably be justified. Life is too short to drop poison into the pool. You know?

Greg... I'm laughing. That sounds pretty darn good - and as soon as we can get peaches here, I'll have one, too.

Redstocking Grandma... Oh -- you know from experience, then. Hugs to you!!

Procopius... Thank you. Gratitude is one of the best balms, ever., at least for me.
Ranting Boomer, You are exemplary; taking your father home will bring you peace whenever you remember him through the years. Of course you're exhausted and feeling deserted by your siblings, there's really no getting around this unless you have someone come in a couple of times a week to bring you some reprieve. I don't mean to minimize how much work this is for you, but like I said, you'll be so happy you've made the decision to keep your dad with you, especially when you are thinking back on your relationship with your dad.

Your are someone very special!
I feel so bad for you that I want to offer 'easy' suggestions that I'm sure others have before. I have had many ups and downs with my mom but for now--against what we were told in 2005 ("She has Alzheimer's on top of her bipolar disorder. Put her in a home. She'll never be the same again")--she is at home and doing well. It seems utterly crazy to me that your four siblings can't come together and pay, if nothing else, for someone to spend a few hours a few times a week with him to at least give you a *little* break.
Thoughts and prayers to you. You are doing your best, and that is heroic.
Oh, you made me cry too. I am honored beyond words. And I am hurting for you. Even though we are blessed to have a family team, I'm also the Caregiver. The One Everyone Counts On. The intermediary with doctors and hospitals and nurses and social services.

Others are there to help, but I have The Responsibility. On call 24/7. To listen, advise, encourage, advocate for, physically care for.

Plus, there are our parents in Florida, for whom I hold the same role. Have for years. They are not emergent ... at the moment. I finally kicked some sibling ass when it became clear I was needed more here than there. But I still go there whenever I can slip away.

You must find help so you can slip away, if even for an afternoon, a day, an overnight. Can you not MAKE one of your sibs take him, even for a day? Please, be aware of Caregiver Syndrome, the sense that no one can do it right but you. It's a sneaky bugger and undermines your ability to get help.

I thank you again from my heart for this and for all that you do on your own. You've got strength and courage and moxie. And you will someday sleep the sleep of the righteous while your siblings cry with guilt and shame.

Small comfort now, I know. But there's one thing now ... you've inspired the admiration of everyone here and should come to us for support whenever you need it.
Junk... I took Dad in for all the reasons you said - and because "not" taking him was the worse option. Just gets very exhausting because it's around the clock, but you're right - I will always be glad i did this.

DeliaBlack... it is crazy, but they are what they are, so I'm on a waiting list for external (non family) respite and senior day activity programs. Hope they call us soon!

Kyle... thank you! :)

Sally... thank you! I can't "make" one of the sibs take him because they won't. Mostly it's the round the clock stuff. Most nights he wakes me twice - around 2 and again around 4. Very exhausing trying to sleep in shifts. But, we are on a wait list for day programs and non-family respite. Thanks for the kind comments... and thank you again for flipping my state of mind without even knowing you did that. The power of words, and you use them so well. :)
O God, this breaks my heart. Your siblings--WTF???? W?? T?? F??!!!!!!!!!!!!!!!! I am enraged!

If I lived near you I would help you. xxoo
I have tried to post this comment several times--here I go again, because I believe it needs to be said.
What you are doing for your father is the single best thing one person can do for another person. It is compassion in its very basic soul, it is what we wish for even for a stranger we hear about on the news: someone there to care. Someone there to make it a little better.
It is not easy, I know that, you know that. I think about you and what you go through. I don't think I have it so bad yet. But I know it is the right thing, what we are trying to do for our folks.
All my best to you.