My sister, Donna

[KayC]

I have procrastinated posting about what I'm going through, I guess I've been somewhat in denial...if I post, that makes it real.  I can't deny it any longer.

50 years ago last September 17 my sisters Donna and Peggy had a horrid car accident.  Donna was 25, Peggy 23.  Peggy was driving.  It was dusk, raining, and it happened as they were cresting 30th Street Freeway in Eugene, a steep hill.  We were all coming back from Crater Lake, and our car (my parents, myself, my little sister) was about 1/2 hour behind them.  We saw there had been an accident, the cars were stopped, police lights flashing.  We thought, "Poor people", you know like you always think...and then we saw the baby's bed in the middle of the freeway with broken glass all over.  We saw Donna's crumpled blue VW wagon...my mom ran screaming out of the car, my dad had to go after her.  The policeman and him guided her back to the car.  The ambulances had already been and gone.  The police said one of them was killed, wouldn't say which one.  My parents dropped me and my little sister off at home and then headed to the hospital.  The one who died was Donna's three year old boy, Jimmy.  It killed us.  It's a moment in time I will never forget, that moment stood still for us and everything in my family's lives became a "before" or "after" from that moment on.

When I was able to see Donna in the hospital the next night, she was hooked up to tubes and machines.  So was Peggy.  Both of them in a coma.  Peggy's lasted 2 1/2 weeks and when she came out of the coma she seemed a blithering idiot.  It scared us to death, we were afraid she'd be like that the rest of her life.  But she pulled through, the only lasting damage was for a year she saw double and had to wear a patch over an eye and change eyes every few hours.  And her equilibrium was damaged, for the rest of her life she couldn't walk on uneven ground, she'd fall easily, which became more pronounced the older she got.   The baby, Mick, was kept for observation overnight but all he sustained was a tiny cut above one eye.  He was the joy in our lives, what got us through it, he was only four months old.  Donna took the brunt...she had severe brain trauma, it crushed her jaw and her pelvis, and she became quadriplegic, but the worst damage is what was done when they did the emergency tracheotomy at the scene...using the tube of a pen to open her airways, it butchered her vocal chords and trach.  It became very difficult for her to communicate and she choked easily...for the rest of her life.  Donna was in a coma for 4 1/2 months.  Night after night we'd go up to the hospital and visit her, talk to her, tell her we love her.  We had to be strong, we didn't have a choice.  When facing a tragedy like this, you just keep going, you do what you have to do.  Gone were the days I played after school sports, I was needed at home.  I was 15 when this happened.  Dating was out, gymnastics ended.  I never minded, you do what you have to do for family.  When Donna came home from the hospital, we had to literally tie her head up to the wheelchair or it would fall over, she had no strength.  We had to do speech therapy, physical therapy.  She screamed.  She wanted to die.  We kept going.  Day after day I'd come home from school and take care of my little sister Julie (six) and Micky, and Donna while my parents took a break at the tavern, their escape.  At nine they'd come home and I'd start my homework after everyone else went to bed.  Peggy was home and back working, and moved out within a few months.

When I was grown Donna went to other living situations, a nursing home (which she hated), foster care, etc., even tried a commune once until she got sick.  She tried living on her own with an aide, but when they didn't show up, that didn't work well, she was totally dependent.  Foster care worked the best.  After years and years, she finally got into a foster family home that was "home" to her, a family to her.  The day before Thanksgiving (2017) the state sent someone to come get her and move her to a nursing home.  We said "Hell no, that's not happening!"  We knew that would be the end of her.  She'd been in and out of the hospital for reoccurring bouts of Pneumonia due to her aspirating...stemming from her trach problems.  Her hospital stay in November we learned they hadn't fed her for five days!  When we confronted them, they said "We didn't know she could eat."  What??!!  This is the kind of stuff we were dealing with.  They couldn't understand Donna and ignored her caregiver.  The state removed her caregiver's license because she was taking care of her grandchildren temporarily, they threatened to kick Donna off Medicaid because we refused to let them move her away from her home.  After over a month of their not returning our calls, we finally got a different caseworker to listen to us and she allowed Donna to have in home health care, allowing her to retain her Medicaid.  Another bout of Pneumonia in December.  Then in January, again, and this time they told us she had about 24 hours to live.  They put her on hospice.  I said, "NO!  She needs and wants Palliative care!  She said she wants to live!"  She wanted antibiotics.  They finally agreed, oh my God the wheels turn slowly.  They wouldn't admit her to the hospital again but they agreed to give treatment (antibiotics).  Peggy had been in charge of handling things but she is beginning signs of dementia so I had to step in, even though I have no legal jurisdiction, and hope my voice was heard on Donna's behalf.  No time for legalities, life and death issues to be dealt with.  The "24 hours" was a week ago, Donna rallied, improved.  Then again, yesterday, we were told once more that she has 24 hours or less, and this time she is unresponsive.

Last night I hit an all-time low.  I felt severely depressed.  My sisters and I are so close, we have been all our lives.  With an alcoholic father and a mentally ill abusive mother, us girls banded together.  We've always had each other, we've weathered everything in life, broken marriages, tragedies, you name it, but we've always had each other.  When my little sister had a baby born without a brain, we were supportive.  When I have been through my calamities, my sisters were supportive.  Everything that happened in life, we were there for each other.  And now one of us is going.  The first one.  And I felt last night like I couldn't handle it.  I've already lost my husband, so many people, pets, friends, you name it, I felt ill-prepared to start losing my siblings.  My parents adopted Mick following a year's kidnapping from his birth father to a foreign country...my nephew became my brother.  No one asked Donna what she felt about it.  Mick has been distant from us girls, we felt perhaps closest to him when we were going through my mom's dementia and death, but then when that was over, he retreated back into his family again.  Perhaps it's formidable to be the only boy in a family of five girls, all so much older.  I wonder if he knows what a joy he was to us in that time fifty years ago, he was what kept us going.

It's too early to call and check on Donna right now, they get up late.  So I wait through the quiet hours, waiting to hear how she fared through the night.  Did she make it?  Is she still unresponsive?  Is she alive?  My heart cries out!  There is no resounding answer.  Grief is like that...you cry out and no answer is forthcoming.  It does what it wants.

(I posted this here instead of in loss of sibling section because I know you all here, I hope that's okay.)

[M88]

Awe Kay, my heart aches for you.  You have known way too much heartache in your life already.  Know that mythoughts are with you as you endure what is ahead.

Sending you strength, love and hugs xXX

[Skywise]

Oh Kay.  My heart is breaking for you. It's so unfair that after everything you've been through already you now have to face this on top.  I wish I could say something to help you but, as we all know, words are useless at times like this.  Just know that I'm reaching out to you and Donna, across the thousands of miles between us, with all my love. I'm sorry I can't offer a physical cwtch but please know that I'm holding you both in my heart tonight.

Hugs

Sky

[LoveD]

KayC,

I wanted to cry when I was reading your postings.  Your journey also reflects the strength from your family to fight with the fate.  I wish Donna will make it.  No matter what we always are here to support you.  Many hugs to you.

[Tineke H]

Dear Kay,

It's good you posted here.I have noticed that 'activity' on the loss of partner section of the forums is much higher than anywhere else.We know each other and we know the names of the lost loved ones and in some strange far away way we have become friends.

I just can not imagine what you are going through at the moment with Donna being unresponsive and you not exactly knowing how she is at the moment.I live in Australia for 6 months of the year while the sister I am closest to lives in The Netherlands.We Skype a lot and WhatsApp every day.What would I do if I did not have her anymore.?I just don't want to think about that.You have a very special bond with Donna through all the things that have happened in your lives.That bond will be there forever.

But now you are thinking about how it would be if Donna were not there anymore.Ahh,so painful.

You have shared your feelings,worries and your whole life with us.You trust us.Thank you for that.

[KayC]

Thank you to all of you for your responses, they mean a lot to me.  Donna spoke with my sister Peggy and told her she loved her, this after being labeled "unresponsive".  Once again she's outlasted the "24 hours" they gave her.  I'm in a better place now than I was, after talking with my son and my friend Jim, and much prayers going up on our behalf.  I think I've been in denial, and fought so hard for her, unwilling to accept the inevitable, but I'm seeing the situation more as it is now.  While I'm sure I'm going to lose her and will have to get used to that fact, I hate that and wish we didn't lose ones that we love.  Us five girls have always banded together through everything in life, I can't imagine when that number starts shrinking...a new era and I don't like it. 

[Lisaislost]

So sorry Kay, you have been a rock to so many of us as we began our horrible journeys here. Prayers to you ! 

[Tineke H]

Dear Kay,

I skyped with my sister in The Netherlands yesterday and mentioned this forum to her, as I had in the past and I particularly mentioned you and the situation you are in now with Donna being unwell.She knows about you as I had talked about you before and about how much of a support you are to many of us.She described you as 'a sort of mother' of this forum.So true.

We both cried, as we often do when we skype.The thought for me of loosing her and the other way around is just too painful to think about.We all know that one day that is going to happen.We know that we will survive as we have survived the loss of our spouses, but stil....

I am glad to hear that Donna is responsive once again and maybe never was 'unresponsive' at all!Do you live far away from her?Can you visit?

 

 

[Azipod]

KayC.... thank you for sharing this with us.  We are all all ears for you.  I've said it before... you never fail to amaze us .... the more we learn about you, the more amazing of a person you become to us. You've been through so much.  You are truly a role model for all of us to follow!

[KayC]

I live about two hours away from her but I don't drive at night and have to be careful with snow predictions and ice, so it's not easy to see her in the winter...plus their household gets up late and I'm an early bird, so it makes it hard.  She has a caregiver coming in to bathe her, etc. and is on her foster family's schedule with getting up, getting dressed, meals, etc.  It's a pretty busy household with little kids, dogs, etc. so I try not to disrupt them.  There are five of us girls and a boy so a lot of siblings concerned about her, if we were down there every day it would be very hard on their household so we try to be respectful of that.  We can talk on the phone but it's harder to understand her on the phone because we can't lip read.  Her communication is challenging.  I'm thinking of going down there but again I don't want to be in the way of their trying to take care of her.  I've done it, I know how much work it is.

I do appreciate all of your support, it means a lot.  I feel like I've turned a corner a bit in acceptance of what will be, I've been so busy fighting for her that I didn't have time or allow myself to consider that I could really lose her.  I know it's inevitable, I just don't know when.  They keep giving her 24 hours but the doctors don't know, Donna will decide that for herself. 

 

[Nicash]

Kay,

you have been through so much I can’t even imagine. Your strength is inspiring. I hope you are doing as good as one can be in this situation. 

[KayC]

Thank you, I'm doing better (for now).  Of course I know when it happens, it will hit hard.  Every time I've gone through anticipatory grief, it's been amazing how hard hitting the finality can be all the same.

[KavitaHubby]

Hi KayC,

Sorry to hear about her. Reading this sometimes brings different perspective to my thoughts considering pain one has to go thru.

 

Hugs 

Manoj

[KayC]

I was thinking of going to see her yesterday but a friend of 40 years is dying in the hospital and another friend commit suicide yesterday morning, and my dog's Colitis is acting up.  I'm feeling overwhelmed.

[Tineke H]

Dear Kay,

It seems that there is an avalanche of disaster coming over you these days and of course you feel overwhelmed!

Logistically it looks hard to go and see Donna and to speak to her face to face.But of course you want to go and see her.If this 24 hrs business suddenly turns out to have been true you will want to have given her that last hug, said what you wanted to say etc.

I think that if my sister were possibly in her last days I would not leave her bed side.I know it is easy for me to say that and I know that for you that is not possible.

Thinking of you and sending you strength and courage.

[KayC]

I wrote what I wanted to say in a card and mailed it Monday so she would have it Tuesday and they can read it to her but she is sleeping all of the time now and is no longer eating so it will be any time now.  She is going in her own time and way.

[Tineke H]

Hi Kay,

This must be very hard for you.

Is there anything that any one here can say to help you? No ,I don't think so.

We are here for you, just like you are always here for us.

[KayC]

That you all are here, and care, that helps.  Once you've survived loss of your soul mate, I think we can make it through about anything, but we don't relish it.  I remember after George died, our cat Tigger waited around a couple of months, took one long look at me and left, never to be seen again.  A year after George died, our cat King George died.  I'd gotten another cat, Chappy, and within a couple of years he also died.  Then I lost my dog, Lucky shortly thereafter.  I remember railing at God, "Can't you leave me ANYTHING!!" Sometimes that's how we feel.  Nothing is sacred, everything is subject to loss.

[Tineke H]

Kay,it looks as if you have had your fair share of loss.Well, more than your fair share it seems.

We have to be prepared to loose  everything we love.It is incomprehensible.What is the point of living if you loose what is most dear to you.

All we can do is make the best of it.

[KayC]

Last night Donna got up and had some soup.  It seems apparent she is going to die, she sleeps most of the time, rarely has anything to eat anymore.  I guess we have to expect the inevitable.

[Tineke H]

Sad and true.

[Sunflower2]

My heart and thoughts are with you Kay!

[KayC]

Thank you, both of you.  Nothing new to report.  It's a strange waiting game.  Very very hard place to be in.

[Tineke H]

Hi Kay, we are waiting with you and sending you strength.

[lovingstill]

10 hours ago, KayC said:

Thank you, both of you.  Nothing new to report.  It's a strange waiting game.  Very very hard place to be in.

thinking of you.

[KayC]

Report tonight is she is not responding, not eating, they spoon feed her a bit, but it's not enough to sustain her.  She doesn't want to talk to or see anyone.

[Lisaislost]

so sorry!

[KayC]

It's amazing to me that they could write her off and give her less than 24 hours to live TWICE (thrice actually, we went through this a few years ago too) and yet she's still with us a month later.  She's now eating three meals a day and is up for a bit, although nowhere near back to where she was before the Pneumonia.  Now it's a wait and see, we aren't sure recovery is even possible, but we're kind of between hoping and accepting of what will be, if that makes any sense, it's day by day.  I do know this, Donna is not going to go one day sooner than before SHE is ready!  She won't likely let the doctors call the shots!

[Tineke H]

Hi KayC, I always thought that in general medical care in the USA was the best.After reading various posts on this forum I am not so sure any more.You sister seems to be hanging in there for now and that is great to hear!

[Jenn4]

I’m sorry that you’re going through this @KayC. It sounds like your sister is definitely a fighter. Your words have been such a comfort in some of the posts I’ve done and I hope that you know that in this forum , you have us to be a listening ear. 

Sending some positive vibes ur way

[KayC]

Thank you, it feels like I'm in limbo, it feels like SHE is in limbo, we don't know what's going to happen, how do you accept when you don't know what you're accepting?  Just a day at a time, like everything else...

[LoveGoli]

1 hour ago, KayC said:

Thank you, it feels like I'm in limbo, it feels like SHE is in limbo, we don't know what's going to happen, how do you accept when you don't know what you're accepting?  Just a day at a time, like everything else...

You are one of the strongest women I know in my life, first one is my mom.

[KayC]

Sometimes I don't feel very strong, I feel fragile.  But I guess it's like they say, courage is not lack of fear, courage is advancing in the FACE of fear.

[Sunflower2]

a Big HUG!!!

[KayC]

Thank you!

[Rosello]

My dearest Kay, 

I am so sorry for your sister, I was reading the story and I had a lump in my throat, So much tragedy in your life, I feel a little ashamed for feeling so bad about my little porkchop. You are one strong lady,  how is Donna today?  She most be so tired. I can only imagine!  I know that nothing I say can make this better for you. thank you for your words, you have been such a help for me dealing with my pain, I hope I help you as well. now I understand that when we lose loved ones, we are heartbroken, but knowing we are not alone helps, it's like a messed up club nobody really wants to join but knowing we are all going through the same heartbreaking experience helps us so much. :-(

[KayC]

I was hoping we'd be able to take her out to lunch one more time, but she says she can't do it any more, that she's dying.  That makes me so sad, we've been fighting for her but I suppose when you know, you know.  We are going to get together and visit her, bring her a milkshake.  She hasn't felt up to us visiting but we plan to in about three weeks (hopefully the snow will be done by then), she said that'd be nice.

You're right it is like a messed up club no one wants to join, but you know, I'm so glad this place exists.  I've had so much heartache, I don't know how I'd exist without these forums to turn to.  When I was taking care of my cancer-bedridden mother-in-law 30+ years ago, for nearly three years, I didn't have time to travel 100+ mile round trips to support groups (nothing local) or other helps, my life was consumed with taking care of her and my little kids and keeping two households going.  There was no computer, no internet, and I felt cut adrift but no time to deal with it, just keep going.  I'm very thankful for what we have today.

And don't feel ashamed for grieving your little porkchop...comparisons are never a win, keep in mind that to each person, their grief is the greatest and that is the truth.  And the ones we're grieving?  Our grief is a testament to the love we shared...not that it's a measurement of our love, but that it naturally happens, we can't stop it any more than we can stop thunder from rolling.

[KayC]

My sister, Donna, passed away this morning.  The finality hasn't sunk in yet, I've been making phone calls all day...

[M88]

I am so sorry for your loss, KayC.  Sending you love, hugs and strength.  XXX

[Tineke H]

Dear Kay, You are the one we all know on this forum and we feel that you are the one that we can turn to any time.Now we have to be there for you.I hope we can help a little bit now you are the one with (again) recent loss.I can not imagine how you feel.Well ,I can a little bit:imagining what it would like if my sister died.I just do not want to think about it.

My thoughts are with you.It's a cliche, but I genuinely feel for you.

[Lisaislost]

So sorry for your loss! Prayers sent your way.

[KayC]

Thank you...it was a rough day.  9" of sludge to shovel (heavy wet snow like wet cement) in between making phone calls.  One sister is busy selling her house and packing, another left for Mexico right after she got off work, another was at the casinos, and my brother left for a week long business trip (Donna's biological son) so the phone calls were up to me to make alone.  I feel like it hasn't fully hit me yet, perhaps because it was such a busy day.  I think it will hit when we all get together and she is missing.  We plan to have a small private celebration along with her caregivers as they were family to her too.  They were amazing amazing people, they gave Donna the happiest time in her life since her accident, they treated her like family and genuinely got her sense of humor and were such a good fit with her.

No cliches about it, I know your comments come from your heart, and I sincerely appreciate it.

[M88]

KayC, I’m astonished that your siblings have been so unsupportive - crikey !  I truly hope you will see a change in the next few days. 

Lovely to hear you speak so well of your sister’s caregivers.  Obviously, as happens,  special bonds had developed between your Donna and them. 

Hugs, my friend.  You’re in my thoughts and I’m with you in spirit.  XX

[KayC]

My siblings are caught up in their own lives...as is the case when impending death drags out over months.  It's hard to live in that state of readiness when it goes on and on, quite frankly.  People end up returning to their lives.

My sister that was supposed to be in charge of her affairs dropped the ball about filling out the paperwork on donating her body so now we all have to chip in to pay for it...somehow the brother (Donna's biological son) doesn't have to pay and it's left to the rest of us.  It's easier for all of them with their government pensions and dual incomes (they're all married) but for me it's going to be hard.  Another fallout of being widowed, people don't consider when we're alone and our income was cut in half.  It's funny how once again it comes down to my loss of George.  It seems to hit us in ALL of our everyday lives, doesn't it.

[lovingstill]

I am so sorry for your loss, KayC. I hate how often I've had to type those words on this forum since I first joined. You've been a real rock - any time someone joins here, and any time we are feeling very hopeless. I hope you can turn to us to help you in this time of need.

[Sunflower2]

Thoughts and prayers are with you KayC

[M88]

10 hours ago, KayC said:

Another fallout of being widowed, people don't consider when we're alone and our income was cut in half.  It's funny how once again it comes down to my loss of George.  It seems to hit us in ALL of our everyday lives, doesn't it.

Yes, sadly it does, KayC.  I’m sorry you’ve been put in this position and hope your siblings think about your fiancial position and reconsider asking you to chip in. 

I’m struggling to live on less than a third of what our joint income was, with increased outgoings.  We very rarely had the need to employ trades and handymen as Gerry was a wonderful handyman and mechanic.  He always ended up being the neighbourhood handyman at all the places we lived as he enjoyed challenges and helping other folk.   

Hugs xx

[LoveD]

KayC, I am sorry for your loss.  You are in my thoughts.

[Tineke H]

Hi Kay, We all have our own lives to live but in a time like this, when one of the family dies we should at leats try to be a union and sort things out together.Your family sounds colourful : Mexico, casinos!!Your siblings are not making it easy for you and nor does having to shovel snow before you can get to your car.

Thank God that Donna had the carers she had and that she had a 'good' life when she was looked after by them.I hope you can sort out the financial stuff.In my opinion contributions should be means tested.

When is the ceremony so we can all send you good thoughts and karma?

 

 

[KayC]

We are going to have a private family time with her caregivers included but can't plan when until everyone is back from their trips and the snow is gone.

I screwed up yesterday, I loaded my woodstove without opening the bypass door, which means I cracked my catalytic combuster.    I absolutely know better, but it's like my brain was disengaged, all of the stress I've been under.

I took the money out of the bank and paid my share towards the cremation, it will be tight, but I'm doing it for Donna.

Thank you all for being there, it means a lot.

I'm going to my son's this Friday overnight...I haven't brought my dog since they've had babies (three years) so it will be hard keeping an eye on him constantly (he's not used to children/babies) but my son really wanted me to come.  Will come home Saturday to a cold house but it'll be nice to spend some time with him and the little ones.