Sunday, March 22, 2009

Living with Dying: Who's Life is this Anyway?

Originally posted on MySpace, Mar 22, 2009

I had a Tastefully Simple party last Thursday night. My biggest concern when I booked it was, would I be able to invite enough people to make it worthwhile? I never once thought about Harriett or how comfortable/uncomfortable she'd be. Not until the day of.

The party was successful. We had fun, served Blueberry Pomegranate Margaritas, ate beer bread with all kinds of dips, tasted sauces and jams, cheese balls, cakes and cookies. It all went well and I met some people I didn't know before.

But the entire evening Harriett looked much less than happy. She was greeted by virtually everyone who came. If I was busy and didn't get over to introduce them, most guests introduced themselves to her. But she had very little to say or add and basically looked grumpy. After most of the guests left I helped her up and to bed. She let me know she had waited because she might be wet. That would have embarrassed her. I can't blame her for that. It would embarrass me, too, if I were in her position.

Now I am not sure what I think about the whole thing. We have our weekly scrap date and she seems fine with that. Just one other person, Susan, who she enjoys and has accepted into her small circle of friends. But if I expand on the scrap day and have more people come, am I creating a weekly situation she will be uncomfortable with? I know I have to have my time and do things that are for me, but there are times that it's just not worth the negative feelings I may end up facing. And silly me, I don't feel like asking permission to arrange for an event in my own home.

To be very honest it's not that big a deal to me. I inherited the "hermit" gene from my mother and I am very comfortable staying at home without a lot of outside stimulation. I can't go it forever, but I can do pretty well. The hospice nurse seemed to get a little frustrated with me the other day when I said I was doing okay. We'd had one conversation wherein I wasn't doing so well and I think she thought I should still be in that place. But honestly, if I have the opportunity but decide to stay home, that is almost as good as going out. Bottom line, it's my decision to stay or go.

So why am I thinking so much about this party incident? There may be some guilt inovlved in that I didn't even think about Harriett when I planned it. Or maybe some resentment that I should have thought about her. Perhaps I was a bit disappointed that she appeared to be so grumpy. But then again, 1) that is her usual expression, and 2) she did have more pain than usual that evening.

I think if I boil off all the extraneous stuff, what I get is that I just didn't want to spend my life this way. For more years than I can count, I wished I was a stay at home mom. We lived in-city in Seattle, not a cheap place to live. We needed two incomes and I really was okay with that. But I did envy moms who were at home during the day. Eventually I worked out a plan where I worked part time and was home before and after school with my girls. So, in essence, I was there for them as if I didn't work outside the home.

When we moved to Sandy and Mom and Harriett moved with us, I didn't start working right away. I called myself a Stay At Home Daughter and took care of my mom. When I couldn't stand being at home all the time, Harriett picked up the slack and I got a job. As I've already written, I quit that job when Harriett was diagnosed with her cancer.

I know it's not really true but I feel like all my choices have been taken away. I can't just decide I want to go to work and do it. I can't need an item from the store and drop everything to go get it. Spend an afternoon at Starbucks with a good book on a whim? No can do. Go site-seeing in my new state? Not without some serious planning. Not even on the weekends when most people can just blow off whatever "needs-to-be-done" and just go.

I do have choices, though. The choice I made was to be by my friend. To be the family she doesn't have and to make sure she is loved and cared for and not living on the street.

But some days I just want to say, "I gave up my life for this?" Knowing Harriett doesn't have a choice doesn't make my choice any easier. Gah. Forgive me.

Thursday, March 12, 2009

Living with Dying: The Diagnosis

*
Originally published on MySpace, Mar 12, 2009

I find myself wanting to write and do a flurry of blogs and then nothing. It's like I get it all out, or enough to help settle my soul, and then I don't feel the need for a while. But I don't want to drop the ball with this blog. I know I have a whole lot more to write about. So if this feels a little forced... well, it is. It's not welling up in me shouting to be let out today, but I am giving it a little push instead.

I wanted to title this "The Beginning" but it's really not the beginning at all. I don't know when the beginning was and someday I am going to explore that. Let me do this, however, let me show you that I think the beginning was at least more than 2 years prior to the diagnosis.





This photo shows Harriett in July of 2005 when we were unpacking our house in Utah. I think she already shows signs of the cancer, as her right breast appears larger than the left. I know this is not an uncommon situation, but knowing how completely full of cancer/tumors the breast was at diagnosis, I sincerely believe it was well into development at this time.

It really doesn't matter even in the slightest. Nothing I can note or do or say will ever change what has happened. Nothing will make the disease go away or change what we've been through. Especially what Harriett has been through.

When we moved to Utah in July of 2005 we began, for the first time, our life as an extended family unit. My mother made the move with us so I could continue to be close to her and care for her. Initially we expected to find her an assisted living apartment. But as we settled into our new home it appeared that she could navigate our halls, the bathroom was large worked well for her and we had a step-in shower in our master bath. With a few simple tweaks we could accomodate her. I am so fortunate to have a husband that agreed to those living arrangements, and so she stayed. At the same time, several things made it difficult for Harriett to look for work in our new location so as a matter of convenience, she began caring for Mom. All in all it was a great plan and we stuck to it for a couple of years, allowing me to go back to work outside the home.


As the holidays approached in 2007 Harriett began complaining about her health. She felt sick quite often and felt less and less able to care for Mom. I wasn't very sympathetic and felt she was just tired of doing what she was doing it was her way of forcing me to take more responsibility for Mom's care. I felt annoyed. I didn't see Harriett being sick, I only knew what she told me. Eventually the girls began complaining about the downstairs bathroom, that Harriett wasn't cleaning up after herself and it was filthy. I could no longer be an ostrich, I had to look at the situation more seriously. Christmas passed and we started the new year. I began to do more and more for Mom as Harriett did less and less, eventually only doing what she could when I was at work.

Harriett had been losing weight for quite some time. We originally thought it was cool - what overweight person doesn't think losing weight without any effort isn't cool? Then, she had her teeth pulled, jaw bone trimmed and dentures made and fitted.* It was quite an ordeal and major oral surgery, and of course it explained why the weight was dropping, in our minds. At this point we just were not concerned about the weight loss.

By April it was apparent that something was seriously wrong. Harriett didn't keep much if any food down and she was having severe stomach pain. Although we had offered on many occasions to take her to the doctor, she'd always refused... until now. That in and of itself told us how very seriously ill she was. Alyssa had gall bladder surgery just prior to this and we suspected maybe Harriett's stomach pain was similar. We hoped.

I took Harriett to the ER toward the end of April. They looked her over and eventually said they were going to admit her to the hospital. They did every kind of test on her and in the end hospitalized her for a full week. On April 28, 2008 she was given the news. She has breast cancer. The cancer has also spread to her lymph nodes (bad) and into her bones. There was concern that it had also spread into her brain and that could be what was causing the nausea and vomiting. Fortunately, that was ruled out. On that day I called my boss and quit without notice. With Mom living with us and Harriett seriously ill, I could not hold a job and care for these two women either physically or emotionally. I consider that day the Black Friday of my life... I wonder what Harriett calls it?

*In retrospect I wonder about Harriett's oral surgery. As long as I have known her she had bad teeth. During our time in Utah, I noticed that one of her front teeth was moving when she talked. I didn't mention it, feeling that would be "rude" (ha!). Some time later, I noticed the tooth was gone. I did ask her about it then and she said her teeth were getting loose and she didn't know why. Without insurance she had to make the decision to get the rest of her teeth extracted and get dentures. It turned out to be much more of a major undertaking than "normal." Removing her teeth didn't just involve pulling them out, but her jaw bone had started to 'overgrow' so her gums were cut open and the bone was shaved down to a size & shape that could accomodate dentures. It occured to me much later, after her cancer diagnosis that perhaps the bone cancer had played a role in the loosening of her teeth. I supposed I will never know, but it will make me more aware about questioning things regarding my own body.

Saturday, February 28, 2009

Living with Dying: History of the Players

Friday, February 27, 2009

Living with Dying: The Expiration Date

Thursday, February 26, 2009

Living with Dying: Routine

Originally published on MySpace, Feb 26, 2009

I've thought of a lot of ways to start this series, chronologically always seeming to be the one that calls me back. But being a scrapbooker I live by the motto of "Scrap what you feel." That means I don't have to go back in time and start my scrapbooks at the beginning, pulling out all my photos and lining them up by date... I can scrap any little bit of time or any theme that I want, when I want. That is how I am going to write this series. The entire story will eventually come together, but it will be told in the little bits and puzzle pieces that are on my mind when I sit down to write.

My days with Harriett are etched with routine. It's a very simple, uncomplicated routine, but it rarely changes. And the changes that affect the daily routine, are routines in and of themselves. A doctor's appointment every other Thursday, at which I could probably write verbatim the dialog that will ensue at each one, ending with the flushing of her port and a "Pro Time" or "INV" test to be sure she's on the correct dose of blood thinner. The other routine interruptions of our routine are the visits from the Hospice team. Twice a week a nurse and an aide to attend to her health and personal hygiene. And less often the social worker and a chaplin. Through that team and our family, all her needs should be covered.

I am a night owl so our day starts later than most peoples. Since it is late I usually throw on some clothes and head right down stairs to help Harriett begin her day. Unfortunately, this means I shower less often than I used to. Too much information? It's just one of the facts of my life, now. But don't worry, if I am going out or expecting you over, I will be showered, polished & shined!

Harriett is very thin and lacks the strength that she used to have. I throw back her covers and offer a hand so she can pull herself to a sitting position and move her feet to the floor. I dress her starting wtih a fresh Depends, very warm socks with dotted rubber soles and a velor gym suit for it's warmth. After getting all the clothes pulled onto the lower half of her body she stands with the help of a walker and we finish pulling everything into place. Then it's off to the living room.

In the living room she sits in a motorized recliner. It's outfitted with a foam pad provided by Hospice to keep her butt comfy.. there is no fat in her butt cheeks, a thick fleece blanky that we pull around her neck & shoulders, a heavy cotton lap blanket folded in two goes over her legs and feet, and another thin fleece blanket covers the upper body. We've raised the foot of the recliner and she is set to spend the rest of the day in the living room. We keep the house very warm but I often turn the fireplace on for additional heat for her.

I have usually turned the burner on under the tea kettle before I go to her room so now things are ready to begin fixing her breakfast. First I take a fresh glass of water and her pills to her. I keep her pills organized by the week so all I have to do is dump out this morning's pills into her pill dish and we're good to go. The water is usally hot by now and I fix her coffee. It's a spoon of instant, three spoons of creamer and one spoon of sugar. When Mark's home she gets brewed coffee. I have an iced latte every morning so I don't brew a pot like he does. Next is a small bowl of malto meal, with one spoon of sugar and a splash of milk... oh YUM! Right?

Harriett dozes much of the day or rests with her eyes closed. She was an avid reader in the past and she does try to read, but she's been on the same book for weeks now. I think that is very frustrating to her. On occasion she will work on her scrapbook, cutting paper and adding a few photos. She really enjoys sharing these with guests and the Hospice people. She's not into day time TV and not very interested in music anymore so the house remains quiet for the most part. I suppose she does hear me tapping away on the computer, or less often, vacuuming or cleaning. I ask her throughout the day if she needs anything, or if there is anything I can do for her. The answer is no 99% of the time. If she eats anything at all during the day, it's a Boost energy drink. Sometimes she'll have a cup of tea.

For dinner she's been having another bowl of malto meal. This is a half cup serving we are talking about. Last night she changed this routine and had ice cream. Can I tell you how happy that made me? It's an indication that her appetite may be returning in some little way. YaY!

It's off to bed anytime between 8pm and 11pm, usually closer to 8:00. She uses the walker for balance as she lowers her pants. We change Depends if she needs to. She sits on a blue bed pad and we removed the gym jacket and her top, her pants and socks. She has her second little dish of pills and then I lift her legs up onto the bed and cover her up, tuck her in. We say "good night" and on occasion "I love you." I turn out the light and leave the door ajar just in case she needs me I will be able to hear her.

Every day I wonder what this existence is like from her perspective. I imagine (sarcastically) her inner voice: "Yippee!! I get to sit in this chair all day. And if I'm good, I'll get to go back to bed!!"

I am so thankful for the people who affect this routine. I am not good at chit-chat and she gets so much more animated when they are here. I try to give them space so she is the center of their attention and can totally soak it up. But I listen from another room and thank God over and over again that we have this help, for more reasons than just their medical expertise.

So this is the bare bones in the day of the life of Harriett. There are of course, variances. Some days involve throwing up. Some days involve extreme diarrhea. And there have been days we've found her on the floor because she tried to walk on her own. Hopefully, those are behind us.

Wednesday, February 25, 2009

Living with Dying, Introduction

Monday, February 2, 2009

On a lighter note....