Wander-Inn

Monday, November 9, 2009

What makes a good weekend....

Originally published on MySpace, Nov 9, 2008

Current mood:rejuvenated

Little things often merge making a bigger and better thing. In this case, that accumulation has made for a good weekend.

Silly as it may sound, the first event was finding a couple of new MySpace friends. Through a small series of coincidences, I found two new-to-me bloggers that I am enjoying and the 'funniest' part is that one of them is a real Boone County, KY neighbor. How cool is that??

The next little event was meeting two more neighbors in my immediate neighborhood but not on my cul-de-sac. I just went out to get the mail and a small crowd, 2 women, 4 children and one small dog, were walking by and stopped and introduced themselves. As I result, I am now part of a neighborhood book club - YIPPEE!!!!

After a night of no sleep (small lie - I did actually get about 2-3 hours of sleep) I set up a Close to my Heart table at a Christmas Sale at a local day care. Being as I overslept I missed getting an ideal spot and was in a side room with four other vendors that was largely overlooked. But there was one young girl who spent most of her day there that was fascinated with my product. She drug every person she could over to my table to show them my fascinating acrylic stamp. I MUST borrow this young lady for my next event! LOL. In any case, I felt the event was very beneficial to me, being new in my community, and I'm very happy with the final result. Woot Woot.

So today is my kick back, take care of my husband's deep chest cold, and watch chick flicks with the fire roaring and a cup of cocoa day.

It's a good weekend!!

10:57 PM

Tuesday, May 26, 2009

Living with Dying: Denial or Reality?

Originally posted on MySpace blog, May 26, 2009

Current mood:confused

It should come as no surprise that the past two days have totally surprised me. Seriously. I know what I just said and it makes no sense and yet it makes perfect sense.

After getting Harriett installed and all comfy in her hospital bed, which has become the focal point of our living room, we 'settled in' and began to wait. For two days I camped in the living room with my book and computer for company and watched Harriett breathe like a new mom watching a newborn.

Then things got weird. At one point Harriett asked me where her sandwich was. Okay, not only odd that she hasn't eaten or drunk anything for three solid days, but she hasn't had anything as firm as a sandwich for MONTHS. I don't believe I could have understood her correctly so I ask her to repeat herself. Yep, she wants her sandwich that she had asked for. I know for a fact she has not requested a sandwich but I want to make her as comfortable and happy as possible so I go along with it and ask her what kind she wanted. Tuna. Dang, Mark & I had just finished off a tuna salad 30 minutes earlier. I find a small can of salmon and make her a salmon salad sandwich and hope she won't notice.

After giving Harriett her sandwich, which she barely seems aware of, a friend stops by. After a visit she prepares to leave and stops by the bed to chat with Harriett on her way out. She asks her if there is anything she can get for her and Harriett told her she was still waiting for her soda and didn't understand why we hadn't brought one yet.

Oh
My
Gawd

I know she didn't ask for one and I began to wonder if she thought she was back in the hospital because that's where she always had soda brought to her. I'm a little dazed by all this but I go fetch the soda, and when I bring it back I notice she actually has eaten half of her tuna sandwich. She seemed to have little control over her hands, but she ATE.

Everything the hospice nurse has told me and all the literature I've read states that in the dying process there is little desire to eat or drink anything and that it's okay. As the body and the organs begin to shut down it uses too much energy to eat or drink and digest food. This is very strange behavior indeed!

This morning Harriett wanted her usual coffee and malto meal. I'm not saying she's eating like a logger, she's still barely eating anything but the fact that she even wants to or is hungry is quite amazing.

Harriett's voice is barely a whisper which makes communication challenging. I hate asking her to repeat herself but it's my only choice. She said something to me today as I was setting up her cereal for her to eat. I asked her, "what?" and she replied:

"I am not dying."

You know what? I believe her.

Monday, May 25, 2009

Living with Dying, approaching the end.

Originally published on MySpace blog, May 25, 2009

Current mood:anxious

There is so much I haven't blogged recently, although I have thought about it quite often. I'll think I need to express this or that, get it out of my head and onto a page, but when I have the opportunity I just can't do it. I am still feeling that way, but I know I have missed a lot that I wanted to record, so I am soldiering on with it today.

When Harriett came off the chemo things began to change. As the poisons left her body she began to feel more like her old self. There were still many days of pain or nausea, or vomitting, but the days inbetween I saw some of the old Harriett. She was reading again, or scrapbooking, paging through my catalogs to place orders. Life was happening as if it would go on 'normally' indefinitely.

I think we all tend to set goals that we work towards, or in Harriett's case, live towards, and she just passed two of them. The first was to reach the one year anniversary of her cancer diagnosis. That day was April 28th. The next event was for Krissy to arrive home in Kentucky. We had only one visit with Krissy since last August and she and Harriett have a special bond. Krissy arrived home in Kentucky on May 7th or there about.

Things have been deteriorating, walking with the walker to and from the bedroom has become painfully slow. Getting on and off the toilet became a real challenge. The toilet seat is extremely hard on the butt when there is absolutely no fat between the bones and the skin. Although Harriett's appetite had picked up she was still losing weight and was last weighed at 97 lbs fully dressed, including shoes. She looks like she just barely survived Auschwitz. She has stopped eating and stopped drinking.

Last week the nausea hit full force with some major vomitting and pain. About the same time Harriett could no longer support herself to stand up and be dressed or undressed. Alyssa helped me and we managed the best we could to get her in and out of bed and to and from the living room. By the time the hospice nurse came to visit on Friday we all agreed that it was time for a hospital bed and Harriett has assumed her final residence in the bed here in our living room. She has a catheter so no longer needs to get up and down for bathroom visits.

The nurse said she thought she's not likely to last more than a week.

This is the hardest week I can remember in my life. Wanting peace for Harriett but still wishing she'd never have gotten sick. Harriett is family to us and it's so hard to let go.

I'll write more later...

Monday, March 30, 2009

Living with Dying: Emotionally Crazy

Originally posted on MySpace,
Views (127) · Edit Mar 30, 2009

Last week was an odd one for us. At least emotionally. Let me start with some background.

Harriett is a very private person. As long as we have been friends, as long as we have shared a home, there are thousands of things I don’t really know about her. I think she probably knows just about everything that can be known about me, but she keeps her ghosts well guarded. And that privacy can be taken right into everyday living. She rarely shares her feelings or her fears with me. When she does it’s such a shock that I break down as much as she does and that doesn’t make for such a supportive friend.

Last week was a “doctor’s appointment” week. Forgive me if this is repetitive, but the oncologist only sees Harriett because Harriett has asked to continue seeing her. Since Harriett is in hospice care, she doesn’t receive any more curative treatments. If she were to have a heart attack right in front of me, my instructions are to call the hospice workers, not 911. I am pretty sure Harriett doesn’t really understand all that, but she feels better to get the check up every couple of weeks and the doctor is kind enough to accommodate her. So every couple of weeks I wrestle her out of the house and into the car, to & from and into & out of the doctor office, back home, into the house and into her chair. It physically exhausts her.

Harriett and Mark have an antagonistic relationship. She LOVES to give him shit. Really. LOVES IT! When he’s out of earshot she gloats over it. So he gives her shit right back, tempered with some sort of gruff gentleness, if that can be said. I try to stay out of their “stuff” and leave them to the relationship they’ve created. If I do say something to either of them, it seems to give them fuel for their own opinions, so keeping my mouth shut and watching in amusement is more or less my position.

Last week started off pretty normal. The daily routine was the same and Harriett didn’t have much to say or contribute to much. Her aide and nurse made their visits, which is always good. They are so upbeat and chatty, it really gives Harriett a boost when they come. Thursday we went to the doctor and got a reasonably clean bill of health. Nothing much has changed… Harriett weighs 100 pounds with her gym suit, boots, and heavy coat on. She looks good compared to when she was on chemo. She’s got a bit more energy. I thought it all went well.

She mentioned something to me on the way home about the nurse calling her a “fighter.” I thought, “well, that’s good, because you are!” What I didn’t realize is that Harriett had added her own twist to it. Her interpretation was that they were saying they were surprised she wasn’t dead, that it’s amazing how much she’s still fighting. That hadn’t even occurred to me at the time. I have my own issues with “words of encouragement” meaning something different to me from what was intended, so I wish now I would have realized then what she was telling me.

Later that evening Mark was asking her about the appointment and she started in on him. At some point I asked, “Okay, Harriett, can I laugh at him now?” To this she fell apart and replied that we think she likes sitting in that chair all day and don’t we know she’d rather be dead than not be able to do anything for herself. She went on like that, crying and yelling at us and all I could do was sit in silence and cry myself. It appeared that the dam had cracked. She went on about how we all treat her like she’s dying and how much she hates it. In the course of this was when it became clear to us what “being a fighter” meant to her. Then she became upset with herself for breaking down and making us uncomfortable. She asked the question that comes up occasionally, “why don’t you just put me in the street?”

Ultimately Mark and I were both glad that it had happened. She holds everything inside and sooner or later she has to let it out. Again, I don’t think she understands that. She kept saying that she must need a stronger anti-depressant. No, being on an anti-depressant doesn’t mean “happy all the time.” It means being able to manage your despair with some sort of sanity and even then, there are times when you need to break down and let it out. That time was WAY overdue!

What happens after the cork has blown of the bottle? Everything comes back to some sort of equilibrium and we march on a little bit happier. That’s the up side. But “happy” to Harriett means chatty and I am not a chatty person to those I live in close proximity to on a daily basis. And I can deal much better with the physical aspects of terminal illness than I can emotional aspects. I won’t say give me the poopy mess any day… I really don’t like that either. But at least I can clean that up and light a few candles and spray the air and it’s done. But the genie bottle of emotions isn’t ever going to go away. It sits there quietly until something jars the cork and then boom! It’s sort of like that time bomb game in which you pass around the bomb and hope it doesn’t go ka-pow in your hands. But this is sort of like playing the game solo. Ka-Pow. It’s going to be a little while but I know it’s coming again.

11:50 AM

Post a comment...
- Connie
  I can't imagine what it must be like to be Harriet, but I know it must be extremely difficult for anyone to be in that position. Especially when that someone is an exceptionally private person. I agree that ultimately it's good for that cork to come out of the bottle every now and then. It helps her to let it out, and it helps you (and maybe even her!) to know what she's thinking and feeling. Sometimes the best thing...the only thing...you can really do for someone is to simply *be* there for them...whatever happens. Which you so obviously are. Many many hugs to you, Mark and Harriet.
  - Reply(1)
  2 years ago
  - Betsy Gully
    Thank you.
    
    2 years ago
- Angelic Ross
  I can relate to Harriet on so many levels. The worst is the contstant contradictions within ourselves. They're hard enough to handle under "normal" conditions.
  
  Big hugs to Harriet and many blessings to each of you!
  - Reply(1)
  2 years ago
  - Betsy Gully
    You are so right!! I try to write how I relate as well. I have some strange issues with praise, so I can understand exactly how the "fighter" comment settled in her mind. And as for accepting that she is dying... that would be so extremely hard - it's hard to accept when you know it's probably decades away for a healthy person. So why not create a reality where you are not dying?
    
    It's an incredibly h
    
    2 years ago

Wednesday, March 25, 2009

Living with Dying: Insert Primal Scream Here

Originally posted on MySpace, Mar 25, 2009

Current mood:depressed

Today was the kind of day I used to blog about. Nothing spectacular or big to discuss, just the little everyday things that I observe and come to appreciate. It would have started out like this (yes, I did start it in my head this morning):

Rain. It takes away the 3rd dimension and leaves me with a one dimensional view out my window. The trees across the way are no longer a forest of twigs growing denser and denser in the distance. They have become a one dimensional flat maze of twigs propped at the far edge of the yards. Multiple shades of brown lines and not much else, but for the squirrel. The squirrel appears to be too big for the distance away he is. (I notice this with cats and birds in other yards at other times, too. I wonder is this is my age or if there is something inexplicable happening here in Kentucky.) I watch the squirrel running and leaping from branch to branch on the one sided maze of trees. He goes left and right and up and down, but never far or near. The rain has robbed him of far and near as far as I can tell.

And that blog would have probably continued on later in the day with comments about all the trees that are starting to bloom pink & white & yellow blossoms... everywhere but in my yard. But when I got home from my errands and hair cut and didn't feel so well, all over achey. I laid down until Mark was home and dinner was made. I've been up for a while now. Feeling so wretchedly blah. I feel like I am so incredibly bored that it's completely overwhelming. I don't want to do anything. I don't even want to sit down anywhere because nothing looks comfortable. I don't want to read, watch movies, scrap... NOTHING. I am aware of things I should be doing, things that need some pretty urgent attention... but I don't care one shit. This is what depressed feels like. I've been here before and I'll be here again... I just don't want to be here now!!! I wish I knew which turn I took in the day that deposited me here.

Then Harriett wants to go to the bathroom. Okay. Off we go. She usually doesn't ask to go other than just before bed or upon getting up. But it's about 15 minutes away from when she'd be asking to go to bed anyway. I get her up and the chair is soaked - the blue pad, that is. Learned that lesson. She is wet on front as well as back, that's unusual. And she stinks. As we walk to the bathroom she says something about not having to have to 'go' today. Hmpf, I think. You've been going all day. In the bathroom it's worse. There is no way to get a shitty depends off someone without getting on everything. I want to puke, but I can't. As always I think about how awful it would be to be her. No control over simple body functions and my friends and family cleaning me up like I am an infant. No matter how I feel about any of it, I am always thankful that it's not me. It's not a conscious mantra I've developed... I just can't imagine being dependent on others like that and I know she hates it. All I can do is try to make it seem as normal and inconsequential as possible.

But I hate it. When is this ever going to end??????

Comments

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.

3:40 PM

Post a comment...
- Connie
  When my uncle was the main caretaker for my aunt in her late stages of cancer, he used to use the time when the hospice workers were there to get out of the house and run errands or simply take a break from being there. Maybe you could do the same; take a Starbucks/bookstore break then? I know it's something the hospice workers usually recommend. As far as the party goes, I think you should be able to have friends over - I doubt you throw parties every week! Would Harriet be more comfortable retiring to her room early in the future when you have multiple guests over? (I say that because I know it's what I would do, but then I'm a bit of a hermit anyway!) If not, next time you'll know to see to whatever needs she may have just before people start showing up, so she can be comfortable staying...or going to bed when she's ready. Don't feel bad that you didn't think of it this time, you're not a trained hospice worker, just a good friend who is doing her very best to care for someone she loves in a difficult situation. {{{Hugs}}}
  - Reply
  2 years ago
- Kari Fisher Williams
  Your situation is a tough one sweetie. You have given up the majority of your time to care for those who mean the world to you. It is a commendable decision, but a hard one too. You should not feel guilty for wanting to have company or wanting to just go and do things. It is human nature. Harriet needs the stimulation and interaction. She may not know it, but she does. Keeping her involved with other humans will help her... may not make her live any longer, but make the quality of life so much better. She may be angry with her situation and unable to express it. I am rambling... I just appreciate what you are doing for her so much. She has a wonderful friend in you, Bets... I only hope that others out there see you and use you as an example. Love ya girl!!
  - Reply
  2 years ago

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.

12:53 PM

Post a comment...
- Connie
  My mom had a similar oral surgery although it was for permanent implants...they had to go in, take out some bone, and use it to make new bone to hold in the implants. Don't ask me how that works, but apparently it was necessary as her regular bone was deteriorating. Anyway it was a long, drawn out, expensive, tortuous process of several surgeries over several months. Nothing I'd ever want to go through, so my sympathies to Harriet on her surgery, although I'm sure the cancer treatments haven't been much fun either. Reading stories like this, I'm torn...I know how important it can be to visit the doctor, have yearly mammograms, get preventative care, etc....but at the same time I know that my first inclination is also to avoid dentists, doctors and hospitals like the plague. Ugh. No easy choice.
  - Reply
  2 years ago