Living with Dying: History of the Players

Originally published on MySpace, Feb 28, 2009

Some of my readers know about our 'family' but most of you are much newer to my blog. I wrote a blog back in August of 2006 that explains my family's relationship with each other. I refer to Harriett as our friend, because it's easier than always trying to explain the relationship, but she is actually a very integral part of our family. We know she is family and among ourselves, refer to her as such.

The following link will give you a little bit of our background.

Mutli-racial and Extended Families

At some point I will tell you about those three years in Utah since it all relates to our lives now.

Living with Dying: The Expiration Date

Feb 27, 2009

In Harriett's case no one has ever sat us down and said anything remotely like, "You've got six months to live." We are so blessed for that. Can you imagine having an expiration date stamped on your forehead? Let's just get out a calendar and start Xing off the days. How do you feel when you are down to that last 30, 15, 5.... oh no! Tomorrow's The DAY!!

Having a time reference for your ultimate demise is removing all hope. Harriett had a difficult time accepting Hospice care because typically that is reserved for those in their last six months of life. But it's all just a guess, an estimate. One hospice worker apparently did tell her she had six months. I didn't hear that and if I had I would definitely pulled her aside and given her the old "What For!"

Actually, as far as I can recall, Harriett hasn't even been referred to as 'terminal.' Our Oncologist here in Kentucky has come close to it, but I don't recall her saying it. She's a very young, fresh out of med school doctor and hasn't developed much of a bedside manner yet. For the most part, she seems afraid to say anything. And because of that I really have to question some of the treatment Harriett has had. It's not appropriate for a doctor to ask you if you want such and such in my book. I think she should explain it, recommend it, and as the patient you can accept or refuse. I certain have wished for a more experienced doctor. Not for the actual care as much as for the personal interactions.

Some might argue that having an expiration date would be a good thing. A time to get everything settled and prepared for your departure. A time in which you can use to do whatever you feel is important to your life's experiences. My thoughts in this regard are simple. We are all moving toward our deaths, so do what you want to do NOW. Why wait? As the saying goes, life is just too short.

I believe that Hope is all important to a terminally ill patient. Giving up hope is giving up your life and becoming a soul lost and forgotten in the waiting room. Hope breathes energy and life into us. Hope may give us a tentative hold on tomorrow. And tomorrow and tomorrow and tomorrow. And who can say what will happen by tomorrow? A miracle drug? A genetic breakthrough? Divine intervention? As unlikely as any of it may seem, nothing is impossible, especially for those with hope.

But somedays I want that expiration date. Not for Harriett, HELL NO! But I want it for me. My life and existence are so intertwined with hers, somedays I feel like I am the terminal one and have no future. My here and now are slowly being eaten away and my 'don't wait!' is an impossibility. I want my life back. I always speak in terms of "we" when I am discussing Harriett's care, cancer, treatment, day, mood, routine, appointments, or whatever. I am as much a part of it all as she is, although I will continue on after she is gone. I want to ask someone, "how much longer will this go on????" I want to know that I can make plans without having to depend on someone else to cover for me. I want to get a job and feel productive. I want to be part of my family's lives in a living and growing way. I know from caring for my Mom how much I took from my family that I cannot give back to them. The same is happening now. Is it so awful to simply want my life back?

I don't want an expiration date, but I want something. Something that gives me hope that I have a future. I want to say to the Hospice worker, "I know you can't give me a date, and I don't want one... but can you tell me something like you'd really be surprised if Harriett was still here in....(insert the month/year)."

I hate that although we are walking down the same tunnel together, that the light at the end will be different lights for us. But still, I want to see that light.

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.

Living with Dying, Introduction

Originally published on MySpace, Feb 25, 2009

I have been thinking about blogging this subject for a long time, now. I deal with so many emotions daily in my relationship with Harriett and her cancer, there are always words swirling around in my head asking to be sorted through. Today I have decided to do it.

This will become a series of blogs based on my feelings and observations and the factual issues of living with a terminally ill cancer patient. I am going to be brutally honest in what I feel. Because of that, I want to lay some down some guidelines for my readers.

First of all, I welcome comments. I am, first and foremost, an attention whore. If I were not, I would be blogging all this privately, but for some reason I don't totally understand, my desire is to just put it out there. That means that I will very likely offend someone at some point because this isn't a pretty topic and my feelings about it are not pretty. So although I welcome and encourage comments, I ask that you please refrain from flaming me if I offend you at some point. If that happens, you are free to exit the blog and not return. Sort of like the "off" button on the TV remote.

Conversely, because of the emotions I have regarding this subject, I cannot deal with being put on any kind of a pedestal. There are days when I am mentally flaming myself because of what I am thinking or feeling and to be touted as someone of extreme value when I am feeling that negative makes me feel even worse, knowing inside how extremely far from the mark I am falling. If you don't understand that, please just accept its truth.

Encouragment = good

Praise = not-so-good

Comprende?

Soon I will begin the real meat of this series and I really do encourage your comments. Share your stories and experiences, cry with me, scream with me, pray with me, and hold my hand.

Thank you!

On a lighter note....

Originally published on MySpace, Feb 2, 2009

Current mood:amused

The family that bought our SLC home has 12 children, (9 boys, 3 girls) and their last name is “Jeffs”

Ward Jeffs; Yep brother to Warren, Prophet of the FLDS in Hilldale / Colorado City. Only one wife in the house, but who knows if there are others in the community.

Who'da thunk it? Well, we did have 7 bedrooms......