Sunday, August 21, 2011

Lots of people have been asking, so here is what I am able to share. 
It has been a difficult couple of days...and if that is true for me, I know that that is probably the biggest understatement I could make about what it has been like for my sister. Before I go any further, I'd like to qualify why I felt it necessary to take and even share pictures of the time I spent with my sister and step mom.

See, I have "inherited" an insatiable need for documenting family events, gatherings and yeap, plain old daily life. I have SO many pictures of my children for the simple reason that "Nana" has always been the family historian. After spending the day with my step mom in the nursing home, Kaylee and I went back to my sister's house and had dinner, then a sleepover.I just wasn't ready to leave my sister. Frankly, I wasn't ready this morning either - but Zac had something going on in Hillsborough with his family that I wanted to lend whatever small support I could to him during. Last night after we ate, I wandered around my sister's house and spent most of my time having my eye drawn to things that remind me of Nana (I'm not really digging the phrase "My stepmom" - I've called her Nana since my kids were born, and since my oldest is about to turn 21, it is a hard habit to break. ). The two biggest things that I couldn't walk past were her book collection and the family photos. Bookshelves, frames, albums and pictures on the fridge. The four pictures I have included here are solid reminders of the four moments of peace I felt yeserday. 

She is a huge reader, and it is something we all share. Nana, my sister, myself and our girls as well as our boys. Her books are something that she treasured - and shared generously with me. Truth be told, I took home a stack - and in the stack are ones I haven't read -as well as the first book she ever recommended to me. I've read my own copy many times. But her hardcover, large print edition is something I just want to have in my hands for a little while. I slept with it last night. She hasn't been able to sit and read for almost two years now. 

The family photos are abundant. They chronicle every visit, every occasion, and many many days of no consequence. There were many of her with people she loved - but many many more that didn't include her in them at all. Yet, they all had the touch of Nana's hand in their composition. More often than not, she is the one behind the lens, capturing the memory. I am so thankful she knew to record our lives - and instill a love for doing so in my sister and I. I know we will both carry on, capturing the moments of our lives, both large and small. I know I will be forever sad that Nana is not receiving copies of the moments in her kids lives anymore. They were something she treasured - and displayed with pride.

Yesterday arriving at the nursing home, I was taken aback by the deterioration in Nana that has occurred since a month ago, when I saw her last. My sister took some of my kiddos on vacation with her family for the week of Fourth of July,and when I saw her then, she was not in the greatest shape - but at this point she has deteriorated significantly since then. She is agitated and unable to rest. The more stimulated she is, the less likely it is that she sits for more than 2 minutes....and usually less. She is not lucid and quite unaware of most of what goes on around her. I suspected from the look in her eye when she saw me, that she wasn't recognizing me. My cousin Andy arriving with his beautiful daughter Emma confirmed I was right. She didn't recognize him,either - but let me tell you, there was no denying once she did realize who she was looking at. 

"I know you! Hey! Can you come sit with me?". Andy didn't need to be asked twice =)

And later on....

Nana: "You always took good care of me"                                                                                                                                                 Andy: "No, Aunt Edye...You took good care of  me."
    I still want to cry just thinking about it. He's right, she did. And he is one of the few ( two maybe? ) cousins that came to see her. His brother, Rob was there the day before. If their brother Jeremy wasn't killed in the line of duty as an Epsom officer 14 years ago, I am certain he would be there, too.

Know what? Neither of the moments had anything to do with me, but I wouldn't have missed either for the world. I saw a glimpse of HER again in both of them. If nothing else had, these moments would have made the whole trip worth while.

I wish the rest of my kids could handle the nursing home...or the state Nana is in. I want more pictures like this:

Kaylee and her Nan
As it is, I'm hoping that the closure and the experience was worth whatever trauma it caused Kaylee. She wanted to be there, and I hope she never regrets it, even though it was so, so hard for even me.

My sister and my stepmom - I really cannot imagine one without the other. I love my sister SO much. I wish I could fix this.

I will be honest, I didn't hold it together very well. From the minute we got in the car to go up, really. The second we started the car Tim McGraw's "Live like you were dyin'" was half over on the radio. I couldn't change it or not cry. Hospice has let us know that the old rules no longer apply. If there are things she likes, we can provide.In other words, severely diabetic Nana can eat whatever her little heart desires. The girls and I were going to bake or buy something to bring - and ultimately chose Munchkins from DD.Not because it was her favorite or anything, because Im quite sure they aren't - but Nana never failed to stop at Somersworth DD on her way up High Street to our house, for over a decade, without stopping to buy a giant box for her grandkids to share. Nana and Munchkins meant something to us. Selfish? Probably. I care? Not so much.
Ultimately, it didn't really matter because all I had was a 100 dollar bill - and my suggestion that Dover DD accept that along with my ID so they could record who gave it to them, was refused. The fact that they were messing with Nana's munchkins and bringing on my tears earned the drive thru lady my eternal disgust and I was sure to yell "THANKS! THANKS FOR NOTHING!"  while driving away - a one fingered salute out the window.
Did I SAY I was dealing well? Didn't think so. Hope you can at least appreciate my honesty.

I was unable to prevent random tears throughout the entire visit. I didn't sob like a ninny - while she was in the room at least - but the tears were impossible to prevent. Nan's inappropriate behavior spawned them. Watching Kaylee talking to her ... watching Andy with her ...watching Emma, who is 13, unable to prevent her own tears....memories, thoughts and many many "what if's" spawned them. Watching her sit down with a very little old lady in a wheelchair in the diningroom and hold her hand across the table, telling her how beautiful she is spawned them. I had a nearly uncontrollable desire to curl up in her lap. I wanted to hug her the entire visit, but didn't want to agitate her further. When we left I was unable to control it any more - and just wrapped my arms around her and told her I loved her so much. She placed her hand on my arm, which was around her neck as I bent down to hug her - and she leaned into my hug. It was so hard to let go.

My sister points out that the one picture we are missing is one of Nana and I. I wanted to, but couldn't do it. I don't want to see the pain I am feeling. If I go back next week, if there is time left to, she may possibly be so drugged from the pain patch that I will have lost my chance - and that weighs on my mind.

We don't know what is going to happen and when. I don't know for sure when I will be back in Portland. I am going to try for Tuesday and Wednesday. All we know for sure is my transportation issue is a fucking bitch, and that Hospice has stopped antibiotics and placed a pain patch ( or at least hopefully they have by today) - she is in just so much pain, and the oral meds aren't enough - and she isn't reliable about being cooperative about taking them. OR staying off her feet.  Her leg is twice the size - at least- as the other, and the skin looks hot and infected.

The only other thing I know is this:
Regardless of what my stepmom's family think - especially the ones who have not been around to see her for the last two years as she declines - she would never forgive us if we let this continue. Contrary to what I was afraid of, after seeing her yesterday, I am 150% at peace, knowing she wont be in pain, or confused, or living where she is , and how she is for much longer. What is going on is the epitomy of what she was afraid of ever happening to her as she aged. Her doctors agree that what has been chosen, is the right thing to do for Edye.

My aunt has said "It's a leg wound. why are we just giving up on her?".
Nothing could be further from the truth in any of that question.
It's not "We" or "Us" giving up on her.
It's not the leg wound.
It's my sister honoring my stepmom's desire for dignity. Truth be told, if she could ever have known that my sister even let her be taken to the nursing home and allowed to live the way she is right now- the lack of lucidity...the confusion...the inability to care for herself...the inability to recognize her family or even make sense 98% of the time, or communicate her wants , when she even HAS any wants - she would have never forgiven us. The leg wound is irrelevant. It's never going to get better enough to unmedicate her, but even if it did, my stepmom is gone. The times when she "comes back" enough to be recognizable are few and far between. Seeing what little realization she has through the haze and confusion is more than I can bear to see in her eyes. All there is sadness and pain.
My aunt telling my sister that having Nan in the nursing home and hospice attending to her, is  "at least easier on YOU now" is unfathomable to me. Unforgivable. Where were YOU for two years? What on Earth do you know about the degree of difficulty it has been to care for her when she doesn't want the care? What do you know about the "ease" that lies in leaving her in a place she never would have been able to accept living - knowing she is alone and that today may have been the last day she shows some recognition? How easy is it knowing your mother is suffering?

Maybe she should have been a fly on the wall last night after dinner as Erica and I sat overwhelmed, on the floor of my stepmom's room.
Then, she could have appreciated how "Easy" it was on my sister as we sat there, choosing what her mom would have wanted to wear for her own funeral.

Not only would she never have forgiven us for making her continue like this indefinitely, Edye never would have forgiven some of you for being selfish enough to place blame with her daughter so you wouldn't have to feel the guilt of not being there to offer care and support, while her only child shows the generosity and compassion of letting go.
Why do you THINK she chose my sister for these decisions, so many years ago??

I cannot believe some of you - her family - didn't know her well enough to have seen her with the amazing dignity and composure she had - and not know that was the only way she wanted to live.

God save you, if you so much as make my sister flinch in the future.
She may walk away from your accusations and carelessness, but I will be damned if I will.
I can't do much, but I wont let your selfishness and lack of kindness touch her.
She is already quite destroyed.

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