Sunday, January 26, 2014

I shall pass this way but once...

And so here we are, in this particular place, at this particular time. As I write this, I can't say that I am feeling any one emotion. I have had my bouts of crying, but there are times when the tears don't come and I just feel stoic. Then I feel guilty. At times, I feel a sickness in the pit of my stomach. On a few rare occasions, I feel a calm. Most of all, I worry about the next hour, the next day, the next "thing," and how to stay strong enough and to do all the right things to help my dad through it all. I know there is only so much I can do, and most of the pain I will initially experience will be as a result of his pain, not my mom's. The loss of my mom, I believe, will come much later.

At this point in time what I do have in my heart is an immense amount of gratitude - gratitude for the people who have helped my family and the places that have taken care of my mom over the past what seems like an eternity, but in reality has been a very short period of time.

It's hard to know where to start, and I list these in no particular order of importance. I find myself in awe of a certain act of kindness or act of service or acts of selflessness on more than a daily basis.

Daffodils are my mom's favorite flowers.
My mom has had so many doctors during her journey, but the one who leaves the biggest impression on me is Dr. Salvatore Lococo, her oncology surgeon. She chose him because he was the one who understood the importance of what she valued most, her quality of life, and promised he would always take that into consideration.

He kept true to his word. He encouraged her to keep fighting when he knew medically she was strong enough and that the treatment would be of benefit to her life, and he was upfront with her (and the rest of us) when he knew that in order to protect her dignity that it was time to stop. He was open and honest and compassionate and spent as much time as we needed despite his ridiculous number of patients, and held her hand and hugged us and prayed with us after dropping a bombshell that he's probably dropped hundreds of times. I believe he truly liked my mom, I appreciate that he respected and almost fought for her wishes, was tough when he needed to be and gentle at the same time.

After her eight week debacle at OSF over the summer, they basically kicked us to the curb as soon as they heard our plans to head over to a skilled care facility. Believe me, it wasn't exactly top on our list. We wanted her home. She wanted to be home. The whole "nursing home" scenario was not one she or we had intended on playing out. But there was just no way that home was an option at the time.

I'm not going to lie that my limited past experiences with nursing homes, coupled with every stereotype you've seen or heard under the sun, made me dread her move there. However, I was pleasantly surprised. At Liberty Village, where she received skilled care, the nurses were caring, upbeat, attentive (for the most part) and genuinely seemed to like her. She quickly earned the nickname "Trouble" for her stubbornness - setting off her bed and chair alarm like clockwork, refusing physical therapy because "I just don't feel like it!" and wondering why the HELL there is no gin in this joint. She kept everyone laughing, and when she finally moved over to assisted living in early January, it was like she had just gotten sprung from the pokey. She'd walk back over to the skilled care side for therapy and couldn't get a few steps without a, "Hey, look! It's Trouble! What are you doing over here?" and "Hey, Carole! Good to see you up and around, Sweetheart!"

I have to thank the staff at Liberty Village for their care, which to me I think is one of the most difficult and exhausting and thankless jobs in the world. I thank them for the ice cream socials, the the music, the wine and cheese hours, the bingo (even though she never wanted to play,) the therapy room and the people who were so kind to her when she didn't really feel like returning the favor.

In the few days we have been at hospice, it has been surreal, comforting, scary, overwhelming, calm, anxious and peaceful. It's a new and different kind of place, where the focus is not on, "Let's get you up, Carole!" or "You gotta eat, Carole!" or "I'm sorry I have to stick you one more time, Carole!" There is none of that. No tubes. No needles. No therapy. She eats when she wants to, she sleeps when she wants to. They cater to all of her needs, which are few. So far today she's had a McDonald's smoothie, part of a milk shake, some orange slices and part of a muffin from Great Harvest. She has a small fridge in her room and we have all the makings for her gin martini right here and when she's ready it shall be served - stirred, not shaken.

Although we've only been at the Richard L Owens Hospice Home a little over 48 hours, something that struck me is what Dr. Olsson, the medical director here (who lost his wife to pancreatic cancer several years ago), said  when he sat down to talk with Mom when she was admitted. Paraphrasing, it was that she is not here to die. She is here to live and for them to offer her the best quality of life possible. For it is not up to them when she passes, nor is it up to her. It is up to God. He asked what her goals were so that he could try his best to meet them. She said, in true matriarch fashion, "That my family is comfortable." Well so far the staff has gone above and beyond to make that happen, even though we don't really have any needs other than to be here with her. However, it's nice to know there's always coffee in the pot, there's soup around lunchtime, and there's cookies for snacks. It brings a smile to our faces when we see the resident dog, Bailey, walk in the room to check on Mom and maybe bum a treat off Dad. It is truly all the comforts of home without the labors, as if we have been give permission to drop everything and just be together.

I think Mom is comforted by being here, though sometimes I'm not sure she understands where she is. I like to think that deep down she knows - and I really do think she does. The aneurysm still clouds her memory, though, so it truly depends on the hour and the day. She's tired. She's just oh, so very tired.

To the friends who have gone out of their way to show me and my family what they might think are small acts of kindness: they are, in fact, huge and very, very much appreciated. One thing that has given me an almost guilty feeling is the outpouring of support from people whom I don't know very well - as in, we don't have longstanding relationships or I really don't expect them to share personal details with me about them. However, those who have been through a similar situation have been kind enough (and it is very kind) to reach out to me and let me know their experiences and to let me know they're praying for my mom and my family. This gives me incredible comfort at the end of the day when I go home alone and am just feeling - I don't know. To be able to sit there on the couch and read the intimate accounts of what others have been through is such a gift to me. I have yet to be able to respond to many of them - it's like what they have said is so beautiful there is nothing I can offer in return other than a thank you.

I also feel a guilt that I have lived in my own bubble for so long that I have not been there to offer support to these people. It seems such a poor excuse to say that I had no idea what they were going through, yet I didn't. It's easy to see a post from someone asking for prayers for a sick loved one and to reply with a simple, "Sending prayers." It's another to reach out to that person and let them know you're thinking about them, or to be able to offer them some sort of comfort or assistance.

I will be better at that. I am now in this dubious club of knowing exactly what these people are going through, and I will make a concerted effort to make sure I reach out to my friends who are in pain because I now know the pain - or at least the beginning of it.

I guess what I am trying to say is that over the past year, I have changed, and it is because of the kindness around me, around my mom, and around my family. I can't begin to express what a difference it makes, especially at a time when my emotions are changing like the weather. I will be forever grateful for those who have touched my family's lives during a time in my mom's life that she  and my dad never wanted, never anticipated, and never deserved.

"I expect to pass through this world but once. Any good, therefore, that I can do or any kindness I can show to any fellow creature, let me do it now. Let me not defer or neglect it for I shall not pass this way again."

Saturday, January 18, 2014

The what ifs

What if every question could be answered with a "yes" or a "no?"

What if there was never any, "Well, to answer your question, we don't know."

What if there were no "percentages of chance," "odds" or "theories to suggest?"

I'm sure there's a place for all of that. But frankly, it's starting to get old.

In the past few years, I've found that - brace yourselves - medicine is not an exact science. Who knew, right? I was naive enough to think that if you had something wrong with you, you went to the doctor and he told you what to do to fix it. Then you went home and it got better.

Silly Girl. That couldn't be further from the truth. Especially when it comes to the big stuff. I don't know that I have yet to feel 100% sure about anything that has been done to my mom in the last few years.

Of course, much of that is ignorance on my part - and I realize that at some point you have to give it up to the doctors and trust that they are doing what they do to make things better. But at the end of the day, it still becomes the decision of the family and not the doctor. That's where things get a little iffy.

We are so incredibly lucky - we have my sister, who by default and choice of profession has become the go-to person for medical knowledge, expertise and relatively unbiased decision making for our family. She has been the one that, tirelessly and without being condescending to our ignorance, has explained and discussed mom's illnesses with the family so we can come to those ultimate decisions and my dad can sign on that hospital paper's dotted line saying, "OK, you may do this." I don't know how people who don't have someone like my sister do it. I know I leave the hospital every night as confused as when I got there, with more questions than answers, no matter how well she's dumbed things down for me.

Questions like, "Why are they waiting so long to do this procedure? Does that mean she's not in any immediate danger or do they just literally not have the time?" "Is she supposed to be feeling this way?" "Why is she sleeping all the time?" "How is she getting nutrition if there is nothing going in or out?" And the big questions, "Medically - why is this happening? and "What's the next step?"

All these questions come back with seemingly ambiguous answers, like:
"Well, odds are it's the cancer."
"But we don't know to what extent."
"We think this procedure will bring her relief."
"No, we don't know how long she'll be here."
"No, we don't know why she's sleeping all the time."

And the worst one, "Here are your options." Like you're choosing between the red cocktail dress or the black one.

Then we wait for the doctor who never comes. He says he'll be in "tonight." We wait. My father waits all day - in the chair - next to Mom's bed. For more than 12 hours he waits. I go home so he'll go home. My sister continues to wait. Late into the night, she leaves. No doctor.

Eventually he'll come, and eventually we'll have (some) answers. But it's never enough, and more answers beget more questions, but he's gone again. And she sits. And she sleeps. And she's sick. And we wait.

And we wonder - what's next? After the procedure, a decision will have to be made. Our choices are chemo or no chemo. A choice much easier said than done. To a medical person, maybe it's obvious - I don't know. To me, I wonder, "what if?"

What if she gets the chemo? Is that what she would want? What will be the side effects? Will she be able to go back to assisted living or will she have to return to the nursing home? How long will the chemo extend her life? And what will be her quality of life? And the biggest question - even though she has made incredible strides in her recovery from her brain aneurysm this past summer, does she remember and know ENOUGH to make that decision for herself? And if not, how in the world do we make that decision for her?

What if she doesn't get the chemo? Do we know how far and how fast the disease has progressed? What will her life be like without it? What is her long term prognosis? What will her quality of life be WITHOUT chemo? Will she be able to stay in assisted living? Are we talking hospice here? I'm not sure any of us are ready for that.

Ready for that. My dad hasn't been ready for any of this. None of us are. But especially him. And I know I talk about this man ad nauseum, but if you look up the word "commitment" in the dictionary, I'm pretty sure his picture is there. More than 12 hours a day by her side - only going home to sleep. Surviving on coffee and occasional hospital cafeteria food. Timing how long it takes from when my mom pushes the call light to the time the nurse actually arrives in the room. Keeping a notebook in his breast pocket of every single thing that occurs, from what she eats to when she goes to the bathroom to when she gets her medication to what she says. Kissing her on the lips every night and saying, "I love you, Honeybunny. Be good. I'll see you tomorrow."

Ready for that. I know she's in there. I see it in her eyes. She may still be recovering from brain surgery, but she's in there. I can see her. She knows. She gives me this look that tells me she knows. She opens her eyes and listens to what everyone tells her they're going to do to her and nods, "OK" and sucks it up. She manages humor when there should be none. She asks for gin to wash down her meds, and laughs that I got lost again in the hospital's maze of corridors. She makes US laugh so we don't cry.

The what ifs. I look at this woman and this man and wonder what if. What if they had never had to visit this place in life. What if none of this had ever happened. What if she does chemo. What if she doesn't. What if it's long and drawn out. What if it's quick. What if she leaves us. What if she stays.

What if she's gone.