What's your secret wish as a caregiver?

I wish--and this is a horrible thing to say, something I've never said aloud except to my mom/co-caregiver--I wish sometimes that my grandma had "normal" dementia. Because even though it would hurt so much more if she had, say, Alzheimer's (because the way she is now, at least she mostly remembers stuff like people), there wouldn't be this horrible feeling of "There IS no solution." Because, right now--and for the forseeable future--what she really needs is 24-hour care, but there's no kind of facility that can provide it: she needs closer supervision than an assisted living facility or something like that could give her, but--and we actually have conclusive proof of this--she also needs mental stimulation to prevent her from going really downhill, really fast, and she's not going to get the kind of stimulation her mind and body seem to crave--like talking to people, going out to eat, going for a walk outside, etc--in the kind of facility she'd need to be in to keep her safe (which would be, honestly, a lock-down dementia ward). So yeah, sometimes--not always, but sometimes, especially when we're talking about what we're going to do when the money for home care runs out--yeah, sometimes, that is sort of my wish.

And, okay, one happier one: I wish we could get the home care caregiving system up and running well enough, and that I/we could have enough money, for me to take my mom/co-caregiver away somewhere for a few days WITHOUT my grandma. (To be fair, we sort of accidentally did just that outside Washington, DC a few months ago, but that wasn't actually a vacation; rather, it was "The car broke down and stranded us in--sequentially--Middle of Nowhere, NJ; Laurel, MD; Other Middle of Nowhere, NJ; and Philadelphia, PA.") It would be really nice if we could go to, I don't know, Boston, or someplace like that. Somewhere we both like, and that's far enough away to make my grandma my uncle's problem if anything should go wrong in our absence! (For the record, he only lives about 45 minutes away from her...but my mom and I live less than ten.)

I wish I could learn to go with the flow better.  When things are good, I'm so happy.  But when we take even the slightest downward turn I get so upset!  My mom told me yesterday that my dad has a cold.  Immediately I flew into "did you give him extra steroids?  Vitamin C?  Is the humidifier going?  Make sure he's getting enough fluids.  What's his temperature?  Better call the doc first thing in the morning since it's a holiday week." mode.  News flash...it's a minor cold.  He's fine today.  But it's like a switch flips in my brain from normal to panic with little in between. 

Not having to worry about the costs incurred with giving them proper care. And plenty of trained professionals to give such care.

@LauraL: Well, yeah. I mean, see, that's, y'know, clearheaded thinking. If I could have 24-hour, one-on-one care for my grandma, without having to worry about how she'll pay for it, or what direction the home health field is heading in, that would sort of solve the problem that causes my first wish. Except that I'm so stressed out all the time that I can't think of something so obvious, or linear, and instead go for the completely INSANE!

Secretly, I wish I had either a nursing or physician degree so I knew when I should and shouldn't worry!   I can definitely relate to Missy's Dad's cold and the reaction that it brought on.

I wish that once a week Mom could magically be her old self again. Or even for just a few hrs. Wouldn't that be great, if she has to have this awful disease. That would give me the strength to keep going taking care of her the rest of the week. Sometimes its so hard to remember her the way she used to be even though I try to keep that vision of the old her fresh in my head to get me thru the days. 

Since it's a wish, I would wish bigger than anonymous:

wish that Mom could magically be her old self again all the time.

Things to ask for that can be given:

agressive reasearch and appropriate action to prevent diseases

an abundant network of available professional care givers 24/7

a "take me away from here for a few hours" .

A way to reload your care-giver-batteries by taking you away physically and mentally from your 24/7 care for a few hours.

I would like to receive freedom from want and freedom from fear, like the Norman Rockwell paintings say.

I wish we had a cheap, fast, no hassle transportation system so I could visit more often.

I also wish we had universal healthcare - so I can be assured that my father will be cared for.

These are all so good, everyone.  I wish for all the things everyone else wishes for too.  Do I get more than one? 

I wish we all had a endless supply of needful things to care for our loved one's.

So we could all finally run OUT of worry.

So many are asking for financial help for caregivers.  How about all of us trying to get a tax break for caring giving costs?  That would be a godsend to me.  Just being able to have the help I need.  Let's start a campaign with Obama!! 

I already got my biggest wish.  My son came in from Seattle for a week to help out.  He was not afraid to do the really challenging stuff for his Dad.  He also did laundry and had it all folded when I returned home from a day away.  And inbetween all of that, he did "honey do" projects I don't know how to do.  How did all of this come about you might want to know.  About a year ago I ASKED.  Yes, I asked my family to support me by coming in every month or so and they agreed.  Now when they are here they insist that I go to a hotel for a quiet  day in the beautiful lobby or even sometimes for a night.  I am so glad that I had the guts to ask specifically for what I needed.  ME days!!  Sometimes we just try to tough it out and at the same time our family or friends don't know how to help but want to.

hi, i lost my mom dec 1, she had dementia. i am a nurse, the  thought leave with you is , in all this craziness you experience  can you find just a small sense of peace for yourself?  this is what i struggled with .  my focus on her was so BIG, all else was hard to deal with.  i do wish you all PEACE on your journey . the pain hurts like hell.  take care( dont forget yourself, but i know that so difficult)

My wish would be for kind words from my brothers and sisters and their families instead of sarcasm.

As human beings,we are subject to having our own brains,lol

I think it is so hard on all family members to have this type of Illness in the family.

Important thing to remember is, we all react differently to things.

they may not see past their own. None the less is their pain.

I think if we worry less with the reactions of others,and take care of our own.....we may come out ahead in our hearts and minds. To have peace of mind is a far better thing to have.

The knowing, I did my very best.

thanx Laura for tHIS precious opportunity to pray out loud...i just thunk one that i hadn't dared to even consider before:

for my Dad (really 2nd Dad who came into my life when i was 5) to slip just enough more from reality so he'll forget how much he's missing his sweetheart of 60+ years who lives with him but doesn't seem like his wife anymore.

Then, since i'm autistic and it came so naturally to me to swing out back with my Mom in the glider, and hand-dance to old music, and play our little ole hearts out day after day giggling and enjoying each other as we NEVER before could, as well as finding it so satisfying to give her ALL the KIND (of) hands-on TLC that she gave me in my infancy...

yes, if only he'd forget, then i could go back home again and take good care of BOTH of them along-side their paid helpers...instead of its being too selfish of me (as i learned reading a book about support groups for spouses) to  stay with them any longer than the nearly four months it took for me to realize how much it was costing my Dad to see his so-loved companion of so very long become a little girl right before his eyes.  i unwittingly hurt him so much while she and i were having such fun...

and it's kind of interesting, cuz i can tell when we talk on the phone he's already forgotten how much he hated my being there...tis a very strange yearning, yes? i really want more time to love on both of them with the simplicity of a child who happens to be their 66 year old daughter...what a voice to Voice Hope to lay before my Daddy in Heaven & His own Son who once was tiny, too... 

p.s. ~ being Propelled by writing tHIS, just walked a couple of blocks to share a hug with a neat neighbor i met this fall.  She's 'bout same age (90-ish) and size (Pygmy-like! Mom & i could always laugh about that, since i grew to be 5'7-ish).  very very warm and satisfying.

My eyes watered for the whole round trip...maybe since it's so cold, but maybe not...

I'm an advocate for private financing alternatives. But times have changed. Public coffers are empty and it seems to me that people who care about the poor and underprivileged are realizing a simple truth: "the best way to help the poor is not to become one of them." And a good way not to become one of the poor is to save, invest or insure for long-term care. Leave more money in Medicaid for people who really need it!

Save, invest or insure now for long-term care. Or take whatever you can get someday from a bankrupt welfare program.

My secret wish is that we could fast forward through the holidays and that I could get a decent night sleep and feel less like I've lost my life. And I wish my siblings would help more regularly.

My Mom is the last living parent we have and has had alzheimers for 3 years. The doctors say she is healthy as an ox and could live many more years. I wish that when I look into my moms eyes that I knew deep inside there she knew that it was me, loveing her and caring for her and making every attempt to give her the best possible life with us in our home with us. I also wish that I could get past the saddness of seeing her this way for it tears me up inside so much that I often go for a ride and cry and my wife does not know it. I just need a sign from god to let me know we are doing ok for her and that she knows it even thou she can not communicate it to us that way. I know when she goes it will be the hardest death to deal with in my life and I dread it as I feel I will fall apart extremely bad and hate that for my wifes sake. If I could trade places with my mom I would in a second for she was a wonderful mother and did not deserve to be so healthy and not have a mind like this awfull diseas has done to her. So I wish I knew that she knew how I feel and that I knew she knows we are trying our best for her and sacraficing our lives 24/7 for her. God bless everyone dealing with this with someone they truly love and not doing it for fun as it is hurtfull and heartwrenching especially now at Christmas.

God Bless you All

Ron and Kathy

Read Learning to Speak Alzheimer's by Joanne Koenig Coste.  It talks about how our loved ones read our emotions very well, even when they can't speak.  I know that it is true for me and my husband.  I only wish I had found this wonderful, positive book earlier.

Well, my wish is that I have the strength to see this challenge through.  I feel that I am being pulled in all different directions trying to help my own family, (I have two teenage daughters and a husband who feel somewhat neglected) as well as by my aunt who I recently had to put in an assisted living facility.   My aunt is very manipulative and trys to monopolize my time as best she can.  She has early on set dementia and is getting very forgetful and needs lots of social activities to stay calm.  I find myself getting extremely tired but not sleeping very well, and having lots of aches and pains that were never there.  So my wish for strength to see this through would be very helpful to all concerned.

@MotherJackie

Not all family members are the best care-givers

@Ron and Kathy

Last weekend one of my colleagues invited me on his grandmom's 95 year old birthday dinner.

She has Alzheimer and seemed not to respond to any of the guests until she saw her eldest son and surely changed her expression for the better.

Meaning that I don't know what goes on in a person's mind, but I do notice that:

  there is more than we think there is and

 for sure there is more than we get communicated in words.