Monday, December 14, 2009

Not Enough, Never Enough…

Go ahead and fill in the blank after enough. There are many words that will do. In my case I will just look at the three that I feel are having the biggest impact on our reality.

Help or Assistance

From the medical community we get delays and excuses, “You are too complicated. It’s not my area. I just feel we need to run more tests before I can sign off on anything.” No effort is made to address symptoms or provide for basic relief from pain, anemia or a hundred other things that detract from quality of life and therefore from quantity of live.

From the caregiver agency we get told, “This is all the hours you are allowed. Family has to fill in for the rest of your needs.” The fact that there isn’t an extended family available to help doesn’t matter. There are two of us in this family who are regularly here helping. Linda provides the majority of care as she also works full time. I come on weekends and do what I can to help Beth and give Linda a chance to have some non-caregiver time. The non-caregiver time for Linda often doesn’t work out as it takes both of us to care for Beth.


If we had enough money we could have taken Beth to specialists early on in this illness and possibly have some treatments and diagnosis. If we had enough money we could provide a more disability friendly home environment. If we had enough money we could have all the hours of quality care giving we need. If we had enough money we could make more dreams realities and have more moments of joy. If we had enough money Linda and I could be on leaves of absence to be with Beth.


There is never enough time. There’s not enough time to just spend together. There’s not enough time to help Beth complete tasks she wants to do. There’s not enough time outside of work when I can be here. There’s not enough time to know this amazing person. There’s not enough time to not feel constantly pressed for time and resentful of things/circumstances that use what time there is. There is never enough time for Linda and Beth to just be together. No matter how much time there is, it is never enough.

Wednesday, November 11, 2009

Flowers of Hawaii - Part 2

This entry will have plants and trees - with and without flowers - real and imaginary!
Beth took this photo at sunset at Waikiki Beach. The banyan tree was pretty common around Hawaii. This one was huge. In the town of Hilo (near where we stayed on the Big Island) they had famous people plant banyan trees - Mark Twain being one. I think there is a tree there that started as a cutting from a cutting from the tree Buddha supposedly planted back in the 6th Century BC.
But back to the island of Oahu... the next morning we went to the Byodo-Inn temple, which was a replica of a famous Japanese temple. To reach the temple we had to go through a cemetary. Along the way we stopped by this egret perched on flowering bushes who was so close we could have reached out and touched.On the temple grounds we found mini bamboo forests. This particular forest intrigued me, but it was the sign which caught my attention. Okay, I admit, I have a weird sense of humour. But really, wet floor? I never considered grass to be a floor, nor needing a sign.I enjoyed playing with the sepa setting on my camera. I thought it made the bamboo forest seem even more exotic.On the Big Island, between the tide pools and the evening hike to see the lava flowing, we stopped at the Lava Tree State Park. There was a lot of greenery.Here you can see the chasms created during an eruption in 1790.But the lava trees were what I had come for. Lava trees form when flast flowing pahoehoe lava encounters wet 'ohi'a trees. As the flow drains away, it leaves a thick coating around the dying tree. So really, you aren't looking at trees, but what formed around the tree. The trees themselves died long ago. In this picture you can see two small trees and around four stumps.Here is a bird's eye view of where a tree used to be. I'm not sure what these plants are. The yellow 'flowers' reminded me of bullrushes. Any ideas on what this one is called?

I don't have names for the rest of these flowers. Please jump right in if you do! I'm not all that knowledgeable about plant names, but this reminded me of a morning glory. This was a delicate little purple flower. I much prefer large, fat flowers to tiny.
This red flower looked like it was growing horns!
My guess for this one would be burning or flaming something or other.These cut flowers we found at the market. They grow in the wild in Hawaii. Still hard to believe I was in such an exotic place that grew these flowers and I didn't have to visit a florist to see them. There's a Chinese couple who have a flower shop 2 blocks from where we live in Victoria. I often stop by to pick up a little boquet of flowers for Beth to look at during the day while I'm at work. They have the best selection. When I was in the shop last week I saw they had grown a number of orchids like these purple and white ones. Each plant had one orchid stem with a handful of flowers. And each plant was about $35. I never asked how much they were at the market in Hawaii. Probably a couple of bucks as there was a great supply of them.One of my regrets is not getting to the market earlier in the trip to buy lots of exotic fruit. I'm not very adventurous when it comes to eating, but did try a fresh pineapple (I could smell them from about 20 feet away), star fruit (the sour variety our driver in the Waipio Valley picked for us) and papaya. The market had huge papaya's 4/$1. I found some in our local grocery store the other week and they were about $4 for 1. The papaya tasted okay, but I think I'd stick with the pineapple. They will never taste or smell as good as the one we had in Hawaii.

Monday, October 19, 2009

Flowers of Hawaii - Part 1

When we first arrived on The Big Island we had a few hours to kill before our rental van was ready. While we waited we looked through the tourist literature and looked at places to visit. Beth found a botanical garden and said we should go there so “Linda can take pictures.” I told her I wasn’t into flowers so much that I needed to visit the botanical gardens.

Those words came back to haunt me as Beth and Cheryl had to wait while I took pictures of every type of flower I came across.

I was taking pictures of this pretty little plant which didn’t seem to mind all the sulphuric gases from the craters and steam vents.

These plants fared better than these bushes which had many dead and dying leaves and berries. The flower sure is pretty, and if memory serves me correctly there’s a myth about how Pele (the volcano god) turned a beautiful woman into the flower so that she could stay near her lover forever.

Flowers seemed to be everywhere. Orchids are wildflowers on the Big Island and grow in bushes along the side of the road like the one to our vacation rental home. So delicate.

Right outside our house were some hibiscus plants and there was only one flower on them while we were there. But what a beauty.

The hibiscus is the state flower of Hawaii. We saw two other types of hibiscus when we were in the Waipio Valley. These ones are called sleeping hibiscus because they don’t ever open.

There was also the more rare double hibiscus which our guide picked for us. The valley was the only place we ever saw these.

The Waipio Valley is where I was first introduced to ginger flowers. I never connected ginger root with big bushes with lovely scented flowers. We saw them in three colours: white, yellow and purple. The white had my favourite scent and was most appealing to me esthetically. I was so happy to find the hand lotion and some bars of soap in this scent. Thanks Beth for convincing me to buy the second bottle of lotion for ‘you’.
The yellow grew in big bunches and seemed a bit more spindly.
Then there were the purple ones which I didn’t even realize were ginger until I saw them in a store which was selling the roots.

Beth teases me about my exclamations when I find things growing or living ‘in the wild’ when the only place I’ve ever seen them before is in stores or conservatories. This applied to the flowers and also the
fish I saw in the tidepools. I’ve seen these leaves in the conservatory back home in Winnipeg but didn’t know what they were.
Turns out they are wild tarot – and not edible like the domesticated tarot which is grown a lot in the Waipio Valley.

Speaking of flowers which are bad for you, the valley also has Angel Trumpets.
They sound, well… angelic but are anything but. They are very poisonous and if you touch them you really need to wash your hands and anything else that got in contact with them.

Here are a few other exotic looking flowers we found in the valley – of which I have no names for…
Please let me know the names if you happen to know what they are. This one is really strange and kind of gives me the creeps.
These are about half the flower photos. Will post the others on another day. Looking over the photos I took, I guess I was more ‘into’ flowers that I thought.

Sunday, August 30, 2009

Making the Dream Reality

It is finally happening… plans are falling into place and we are going to Hawaii in a few months! I normally plan vacations pretty thoroughly but this time there are more considerations as Linda and I also plan for Beth’s needs. I find myself making contingency plans to prepare for any breathing problems Beth will have when we go up Mauna Kea (13,000 feet in elevation). I surf the internet looking for all the disability friendly sight seeing opportunites on the Big Island. I have researched possible options which would allow Beth to snorkel with us. I make and remake packing lists to be sure nothing important is forgotten. I am looking forward to this trip and will cherish every moment and every memory.

On a weekly basis I see Beth grow weaker. I see her systems seemingly fail randomly and sometimes, just as randomly, begin functioning again. I am there with Linda as the pain steals her strength and her sanity. I watch as she uses sheer determination to push past the pain and LIVE rather than exist. I don’t have any idea how long it will be before Beth flies away. So, I work to build happy memories. I want Beth to know joy and love as much as possible. That’s why even when it seemed an impossible dream I started planning for the possibility of going to Hawaii.

Now that dream is coming together. We have our flights. We have most of our accommodations. We have a rental vehicle reserved. We are making lists of what we want to see. Linda and I are planning the budget to cover it all. We may eat a lot of peanut butter sandwiches before and during the vacation. We will certainly be stretched thin financially but, we will have the chance to make Hawaii memories with Beth and that is worth every sacrifice.

Monday, August 3, 2009

Elizabeth F. McClung needs you!!

In the past 18 months, over 300 people have asked to be part of the Postcard Project – requesting postcards for themselves or their loved ones. We send postcards to over 400 individuals.

Last week I sent an email to individuals we had email addresses for asking for their help. If you’ve received and responded to that email there’s no need for you to read further. This blog entry is intended to reach those people who have never given us email addresses or have changed their email addresses and haven’t let us know.

It’s hard to believe that it was only last year that Elizabeth started the Postcard Project. It was just going to be a one-time deal, sending postcards to any of her readers at
Screw Bronze while we were in Japan for our grand adventure before Elizabeth’s health prevented further travels. Well, several thousand postcards later, she’s still at it.

Unfortunately, every few weeks a postcard is returned as the recipient has moved. I thought it was time to update our mailing list so that Beth’s postcards and the energy she put into creating them is not wasted.

The Postcard Project is a really important project for Beth. She’s intimately familiar with loneliness and wants to do her part to change the world, letting others know they are not alone. She does this with her postcards. At first she did it all on her own but as her health has steadily deteriorated she has needed more and more assistance. In fact, there are weeks where she doesn’t get to stamp or sticker at all, just matching cards to people and writing all the comments. But she’s adamant about her motto – no one gets left behind! And if that means she works through the night, or falls over when she’s putting her weight behind some of the larger animal stamps, so be it.

Now this kind of freaks me out, to put it mildly. And I struggle between supporting Beth with her dreams of helping others and trying to put a stop to the dream because of the cost to her health. But I know stopping the project has an emotional cost – the postcards are Beth’s way of reaching out to others – and stopping the project would leave a gaping hole in her ‘community’ and feeling of self-worth as a human being.

So, I have a couple of favours to ask…

My first request is for you to contact me to let me know what you thought of the postcards, whether they have made a difference in your or your loved one’s life, and whether you/they would like to continue receiving them. Please be honest. If they brighten your day or your week we want to keep sending them to you. If they’re about as interesting as the other stuff in your mailbox, please tell us that too, so we can take you off the list and help conserve Beth’s energy.

Send an email to me at Linda.mcclung at or leave a comment here. If we don’t hear from you by August 15, 2009 we will remove your name from the list, assuming our information is out of date or that you do not want to receive further postcards.

I want to stress again that Beth really wants to send you postcards if you still want them. Don’t feel guilty about receiving them if they make a difference to you. You’re the one we really want to reach. It’s just that we don’t hear back from most people so have no idea how they are received. And I’m honest enough to admit that I sometimes wonder what’s the point and wish Beth would spend her time elsewhere.

But reading the responses from last week’s email, my faith in the recipients has been restored. The comments reinforced the difference that Beth’s postcards have made in people’s lives. They’ve inspired me to give Beth more help with the cards and less negativity. I’m also going to compile many of the positive comments into a word document that Beth can turn to time and time again when she is feeling alone and of little value.

My second request is that, if you are able, please reciprocate and send Elizabeth a postcard or note back. Her personal mail has gone down to a slow dribble and she’s feeling the loneliness of being indoors and alone most of the time. Receiving mail from you would really keep her spirits up. We put return address labels on the postcards, but I’ve included our post office address in case you may have misplaced your cards.

Elizabeth McClung
PO Box 2560
Port Angeles, WA 98362

Thanks for your time and I look forward to hearing from you.

Sunday, May 31, 2009

Fragile, Handle With Care

That phrase seems to best describe all three of us this weekend…


Beth is frightened. Beth has been very sick and the changes in her from last weekend are startling and frightening. She is thinner and gaunt. She is weaker. Her skin is translucent. There is a sense of fragility as though merely touching her with my clumsy hands will break her. Beth has always had a BIG presence and now she seems smaller. There is urgency in Beth’s actions – a need to push to finish things. There are presents to send, postcards and letters to write. She has a need to do what she can to make sure Linda is taken care of. The universe is unfair, Beth is frightened and she is fragile.


Linda is frightened. She can’t stop the degeneration Beth’s illness causes. She can’t pretend that there will be a happy ever after and that she and her love will grow old together. So Linda throws herself into things she can control. She rearranges the living room furniture. She focuses on feeding us. She makes lists of what to do and prioritizes them. She makes a master list of the lists. Hers are the actions of someone trying to keep the fear at bay. She is trying to be strong, to be the anchor and yet she is wounded as well. The universe is unfair, Linda is frightened and she is fragile.


I am frightened. The changes in Beth from week to week are no longer subtle. I stay up much too late during the week reading medical journals on line and looking for anything we can do to improve Beth’s quality of life and her quantity of life. I wish I could take an extended leave of absence to be here more. I count the weeks before my workload eases enough for me to be granted more leave. I hate the 18 miles of water that puts limits on how readily I can get to Victoria if/when needed. I hate the uncompassionate and apathetic healthcare Beth receives. I hate the lack of wealth that keeps us from seeking medical help in other places. I am trying to be strong, to be someone Beth and Linda can lean on. Yet my emotions are so near the surface. The more I try to control them and keep them in, the more they break through. I am frightened and it makes me snappy. I am frightened and it makes me sad. I am frightened and it makes me hurt. I am frightened and I cry.

The universe is unfair, I am frightened and I am fragile.

Saturday, May 16, 2009

Constants, Changes and Boundaries

I have been doing a lot of thinking about how Beth’s life is now. Of course this is all based on my perceptions and Beth most likely has a somewhat different view. Well, I can’t speak for Beth or Linda so my perceptions are what you get.

At this time there seems to be two definite constants for Beth – fear and change. I hope there is a third constant of love from Linda, me and the extended family Beth has built through her blog but I think the fear often overrides the feeling of being loved.

Fear is Beth’s constant companion. With her memory problems increasing and her regressions, much of what we take for granted is lost to her. She often doesn’t recognize this apartment. She doesn’t know who the careworkers are, doesn’t understand why she is sick and has to use a wheelchair, doesn’t understand why strangers keep telling her what to do. Imagine being a toddler lost in a gigantic crowded shopping mall and you might get an idea of what the fear is like. When Beth is not regressed the fear is still there. It is the fear of what happens next with her condition: fear of overheating, losing more function, losing cognitive abilities even more, never being treated, never being taken seriously by the medicos. There is fear of being abandoned by everyone or of being institutionalized.

Adding to the fear and often fueling it is change. Beth’s condition fluctuates, often quite dramatically. During good periods she can do 10K’s, visit the park, play badminton write or talk on many complex topics and conduct in depth research. During bad periods she becomes very weak and loses cognitive abilities. These are the times when she is too sick to muster the energy to leave the apartment, go to the doctor or finish simple tasks.

Beth can go from the good periods to the bad periods in the course of a few days, a few hours or even a few minutes. I have been conversing with her and over the course of 30 minutes she loses energy, cognitive ability and regresses. I started out talking to adult Beth and now I am talking with the 5 year old who doesn’t understand what I am saying. It is these periods of rapid regression which cause the most anxiety and fear. I (or Linda) am dealing with Beth as I would with any adult. By the time I realize that I need to switch to dealing with a 5 year old I have made Beth upset and frightened. I am trying to learn to pick up on the cues to Beth regressing to avoid causing the fear.

As part of learning to interact in ways that don’t increase Beth’s anxiety I have become very aware of boundaries. We all have a series of boundaries that are part of how we interact with others. There are people in my life who I am more comfortable with. I have different boundaries for them compared to casual acquaintances or co-workers. I trust people who respect my boundaries and am suspicious of people who ignore them.

For Beth boundaries are important. With the medical stuff she has lost many choices and people touch her often, regardless of if she is comfortable with it. When she goes to bed she is hovered over as we watch for seizures or to be sure she keeps breathing. She has no privacy in showering or being in the bathroom. A lot of the boundaries have fallen victim to her illness. This is why it is so very important to respect other boundaries Beth has.

There is just one area where Beth seems to be unable to set boundaries – when she perceives that someone needs help. Beth is the most giving person I have ever known who always places herself last. This means there are times when Beth will stay up all night emailing people who are having a tough time even though it costs her so much energy her body can’t manage to breathe without prompting.

If I am having a bad time, need support and I keep it from Beth that hurts her. She wants to be there for me (as well as other friends who need help). I just have to balance it so that Beth doesn’t make herself weaker/sicker in the course of being there for me. I have to remember that while Beth can help me I also need to help myself. Just as it is important to Beth that I know she cares, it is important to me that her caring for me not push her closer to hospital.

Hmmm… it would seem I have some tasks.
Help Beth feel that being loved is also a constant in her life.
Understand the cognitive and physical changes Beth goes through and react in ways that reassure her and make her feel safe.
Be aware of boundaries and honor them. Place boundaries to help Beth put her health first more.

Well this blog post seems to have gotten quite rambling. Thank you for letting me sort out my thoughts. If they have helped you as well then that is even better.

Thursday, March 26, 2009

Fundraising update

Beth and I have had a busy couple of weeks trying to raise some funds.

Manga on Ebay

Beth and I spent most of the last week listing over 60 items on ebay. It’s a lot more work than it looks like and definitely a team effort. Beth and I sort through the manga she’s read into what’s to keep and what’s to sell. The sell pile then gets sorted into different days items are to be listed. Each day either Beth or I take the photos and weigh the manga sets. Beth or I resize the photos and I calculate the postage. I start a word document entering in the name of the manga set, the weight, postage rates and the ‘fine print’ which Beth wrote last time we sold manga. Beth is the one who lists the items on ebay, she copy and pastes the info I put together and then writes her own summary and review of each manga set. She also finds or writes reviews to add to the listing. It’s not what most sellers do, but we’ve found that people are more willing to bid on an item if they have positive reviews to read.

Beth’s part is the most difficult part of the process. And it has come at a great cost to Beth’s health. I watched Beth spend multiple hours each evening listing the items. She’d do it no matter what physical condition she was in – nauseous, lots of pain, eyes not focusing, weak from sitting in the bathroom for hours, fingers blue and drifting in and out of consciousness. Emotionally and mentally there was a cost, too. The listings were done in the evenings. As evenings progress Beth’s cognitive ability deteriorates. When she’s really tired, which she was, she doesn’t know who she is, her brain can’t comprehend the words that I speak, and what she speaks comes out slurred at best and jibberish at worst. But even if it slows so that she has to concentrate for each movement and putting up a listing goes from taking 8 minutes to taking an hour, she simply won’t stop. When she is done I try to take her to bed. She says, “I can’t understand you” (A couple times she lost the ability to understand language), and she points to the computer, opens up her blog and starts writing comments. Will she understand me if I pull my hair out sideways and scream I wonder? Why is she SO stubborn (she calls it ‘driven’)!! And why can’t she trust me to take care of her?

I am always torn because I know she needs the money and it will boost her spirits when stuff sells, but I could see it was really making her really sick. So as the days went by, as she worked for hours for 9 consecutive days, I changed from letting her do the listings and adding in the weights to doing that for her, then doing the photos. But I hadn’t read the manga so couldn’t write the review and had no idea what to start the bidding at for each set. After six days of working so hard Beth asked if she could leave the rest of the manga for another sale later in the year. I quickly said ‘yes!’ as it just wasn’t worth the physical costs Beth was having to pay. I was relieved Beth wanted to stop as she’s a very driven person when she feels responsible for something. And she was feeling very responsible for bringing in the money and pushed herself too far. I think asking for permission to stop was a hard thing for her to do but I am very glad she did it. Of course then she just ‘added a few more’ for the next three days in order to bring it to 62 lots.

We’ve timed the items to finish on Friday, Saturday and Sunday night this weekend. Once they’re done Beth will spend more time and energy sending invoices and following up with winners and I’ll prepare the items for mailing. Some packages Cheryl can take back with her but I will be mailing most of them later in the week.

The bids are slowly going up which is encouraging. Most only have one bid on them so far. If you are interested in buying some manga you can check out our listings on ebay. Our seller name is
l-bstuff. You may notice that a few of the manga we’ve received as gifts are listed. We hope the gift-givers are not offended (Beth is worried about this, selling a gift she has read). I hope you feel that you’ve given two donations for the price of one! Beth enjoyed reading the manga that you sent and now she is turning it into cash for future use.

Beth will take half of the money earned to repay an old debt and a quarter will be used to pay for items relating to the postcard project already waiting (an email correspondence from Feb 20th turned into an invoice 2 days ago). The remaining quarter is up for debate. Beth could have a reserve to use for future purchases. But Beth wants to give me the money to put toward the van repairs. The ‘check engine’ light has been on the last two weeks and to get it to go off we have to get one of the oxygen sensors replaced (over $200). I, on the other hand, am hoping Beth will take the money and put it towards the Sakura-con in Seattle next month.

Books, Books and More Books

This is a fundraiser for medical expenses… on Saturday there is a garage sale at the local seniors centre. They have one a couple of times a year and I’ve been going with Beth’s books or book fair stock from the UK each time. I manage to sell about a box each time. This year I’ve bought two tables so am hoping to double my income – or possibly even more because I’ll have more space to display the books. Over the years doing dozens of book fairs, we’ve found the more books people can see and flip through the higher the probability they will buy something.

When I mentioned to Beth that the sale is this weekend and said she wants to pick out more of her books to sell. That means going through boxes of books, looking some of their values up and then pricing them. Even if I do the heavy lifting, I don’t think she has the strength to do this work. The way she pushes herself really scares me sometimes and I just want to take her away to a safe and financially secure place where there is no need to work and she can just rest. For now, I am trying to convince her I have enough books already priced that it is not necessary to do the extra work.

I’m thinking of taking the laptop with me to the sale and if there is a quiet time, compile a list of the books, their ISBN and their price. As several readers mentioned they’d be interested her books, I thought I’d put a list together on this blog and those who are interested can browse through it to see if anything strikes their fancy.

This and That

I’m also planning on having a garage sale (well, a curb-side sale seeing as we’re in an apartment block) in April or May. There are some things in storage that I want to get rid of and some other odds and ends around the house that are just taking up space. I may even sell a couple of old kitchen chairs which belonged to our previous table and are currently scattered throughout the apartment. More space is needed to make room for the mobility devices Beth has in order to get around.

I advertised the old powerchair we were given but almost never used and have someone coming to take a look at it tomorrow afternoon. Fingers crossed that he will like what he sees and takes it away leaving behind some cash!


I’m looking forward to going back to work soon. My GP is looking at me returning after Easter. This is good news as I really miss having a full paycheque. It has made things especially tight the last few months and I want to say again how much I appreciated the donations people have given over the winter. I think many people are having a hard time financially during this economic downturn. Because of the hard times, any donations people give mean even more to Beth and I as we know how much incomes have to stretch. We do not want anyone to go without basic necessities so if you want to donate to the medical fund, postcard or other purposes, please only give what you are able.

Thanks again and I’ll give an update next week on how the auction and book sale went.

Thursday, March 5, 2009

The importance of daffodils

I thought I'd take a few minutes out of the daily grind to write about something beautiful. Spring has started to arrive here in Victoria and I couldn't resist going out and taking some pictures of the crocuses and daffodils outside of our apartment. While crocuses like this one are the first sign that spring has arrived for most people, to me it is the simple daffodil which shouts sunshine, joy and hope. Not only are daffodils one of the first flowers to bloom in spring here in Victoria, but they have been present in so many 'firsts' of my life.

My first encounter with daffodils was on my first job in Winnipeg. Winnpeg is a few miles off of the longitudinal centre of Canada. Basically this means you're a couple thousand miles from oceans - the Pacific and the Atlantic. Because it is in the southern portion of the province, it also happens to be about that far to the Arctic Ocean, too. That translates to extreme temperatures - intensely hot in the summer and bitterly cold in the winter. And winter lasts longer than spring and summer combined.

The social committee at my work was promoting a fundraiser for Cancer Research, an organization that uses the daffodil as their symbol. I donated some money to purchase daffodils and weeks later they arrived. Here it was, the middle of winter, snow had been on the ground for months, the temperatures were in the deep freeze and I had these bright yellow flowers on my desk. They gave me such joy and hope for the future. It makes sense to me why daffodils are the symbol for that particular charity. My second encounter with daffodils was during my first visit to Victoria to see Beth and check out whether I wanted to live here. I believe it was late March or early April and daffodils were everywhere. On the journey from the ferry terminal in Sidney to Victoria, I saw fields cultivated with daffodils. This was a foreign concept to me, prairie girl that I am. Fields were for hay, for corn, wheat and other grains. But flowers? Amazing.

In Beacon Hill park, a few blocks away from where I was staying and where we currently live, the hillside was covered in daffodils. Most yards had daffodils blooming too. All these beautiful sunny flowers. It was a huge selling point for me to move to Victoria. Beth was number one, but I think the presence of daffodils and the lack of mosquitos were tied for second place!
The first time my mom came to visit me in Victoria was also in spring and I took her to see the hillside of daffodils and from that visit forward my mom thinks of me whenever she sees a daffodil. It's a special connection, I think.

That connection was also reinforced when I announced that Beth and I were moving to Wales so that Beth could pursue her PhD. For those who don't know, daffodils are the nation's flower. And on St. David's Day on March 1st, the girls traditionally wear daffodils. (The guys must have drawn the short straw because they wear leeks.) Daffodils were plentiful in Cardiff where I lived. They reminded me of Victoria and my mom out in the prairies. And there was that cheerfulness about them that always brought a smile to my face.

When we decided to move back to Canada there was one thing which I wanted to take back with me. I had always lusted over the carved Welsh Lovespoons. A few days before we left, Beth took me to one of the Welsh Lovespoon shops and I picked out the perfect spoon.Here in Victoria, it is daffodil season again. I feel so fortunate that I can buy two bunches of daffodils for the price of a cup of coffee and bring sunshine into our apartment. Daffodils remind me that there has been difficult times before, but despite any adversity (weather, moving across continents, illness or finances) there is always something to look forward to.

Friday, February 27, 2009

Thanks for the prezzies

Hi everyone,

Just a quick update to say thanks to those who have contributed to the medical fund. It means a great deal to me as I've been worrying about finances a lot lately.

Sometimes to avoid the worrying I've been escaping into the books people have purchased for me off the Amazon wishlist. I've got enough to keep me going for some time.

So many of you have purchased stuff for both Beth and I and I am always amazed. A special thanks to the person who bought me the George Foreman Grill as I now have a renewed interest in preparing meals. So far I've made burgers, hot dogs, steak, chicken fingers, french fries, grilled cheese sandwiches, quesadillas and grilled vegetables. The french fries were a little wimpy but everything else tasted awesome. The steak, burgers and hot dogs taste like they came straight off the gas barbeque. And boy do I miss having a barbeque! Just ask Beth!

Cheryl showed me a trick to cleaning the grill which I have improved on so now it's quick and easy. For those of you still struggling with this one, I suggest that once you're done cooking and have unplugged the grill wet a couple of paper towels and lay them in the grill. As the grill cools the towels steam the plates. When the paper towels are cool enough to handle there is just a little wiping to do - no elbow grease required.

Beth mentioned that my stuff on the wishlist has all been purchased and suggested I put a few more on. As I've got enough to read I thought that if people wanted to give me anything they could purchase a gift card for me from This is for every day stuff that I could use some assistance on...

Shell - gas/petrol for the van
London Drugs - I buy all of the prescription and over the counter meds for Beth here
Walmart - They have the cheapest powerade/gatorade and when Beth drinks 2-3 a day it adds up!
Safeway Canada - One of the two places I buy groceries

Thanks again for all your generosity to date.


Monday, February 23, 2009

Seattle, here we come!

The big news I have to share is that we’ve finally got an appointment at the Booth Gardner Parkinson Centre in Kirkland, Washington (a little north of Seattle). They received all the admissions paperwork we sent them just over a week ago which allowed us to proceed to the next step – making the appointment.

They had a cancellation on March 10th so it was available to us. Unfortunately, when I told them Beth’s brain MRI was on March 9th and we wouldn’t have the results back for at least a week, they had to move us to the next available appointment which was April 6th. So our appointment is on the morning of Monday, April 6th – six weeks away.

Six weeks seems like a long time, especially since we’ve been trying to get this to happen for at least six months. Referrals, tests and paperwork all take time.

I expect I will be working through a great deal of anxiety between now and then. There’s also frustration that it’s taking so long. And lots of ‘what-ifs’. What if it really is MSA – what can be done? Is it too late for any treatment? What if it’s something else? Or worse – what if they say they don’t know or like here, simply refuse to do anything. Ideally we’d like to come back with a diagnosis, prognosis and a treatment plan (particularly pain management if nothing can be done to prolong life).

During the next six weeks we also need to raise some funds. Our provincial healthcare system (HIBC) has received the letter I asked Beth’s GP to write requesting funding for the consultation. They responded to the GP requesting he ask the neurologist to make the referral and either the GP has not forwarded the request or the neurologist refuses to make it. The GP said it was the latter, but I’m not sure if he even asked.

That means we’re on the hook for the cost of the trip and consult. There is the possibility that if we come back with a diagnosis we can get a new neurologist and they can complete the paperwork for reimbursement from HIBC – but for now we’re it. Beth’s current GP is refusing to make any referrals until after Seattle.

A relative has volunteered to use their reward points for accommodation for us and this will be a big help IF it is possible, if not we will hae to come up with several hundred dollars very quickly as we’ll be in the Seattle area for two nights. We’ll also be staying at least two nights at Cheryl’s to break the trip into manageable days for Beth. The consult and hospital fees will cost up to $750 (tests are extra) and then there’s travel (ferry and gasoline/petrol) and food expenses. That's if they get everything they want done and don't want us to return. More than likely they will want specific tests and then a follow-up. Another $1500? Another $2000? It just seems so much...

Our savings from donations has been chipped away at for the ongoing medical expenses, like several hundred going to keep pain in a 'sane' level of pain instead of screaming all the time. $150 every refill, same with autoimmune protectors and the other drugs just since Jan. There there are the other medical expenses (like Wheelchair Ramps) while I’ve been on sick leave (reduced pay) so we need to build that fund up before April. Beth has been donating part of her allowance toward putting money in the fund. We want to sell some stuff we don’t use anymore (Beth is selling her bicycle and skis, and trying to find the right auction house for a water-coloured steel engraving of a Scottish archer. I have decided to sell my electric piano Hohner keyboard). I’d love to find a book fair to sell some books we sorted out but I don’t think there are any around. Maybe I could list some books here if there is any interest from any of the readers.

Cheryl and I went through our red wine collection this weekend and have an amazing selection which I thought we could resell. Unfortunately, we found out that it’s illegal to resell, auction or give wine away in BC. I think it’s the government’s way to make sure they maintain control of the alcohol industry. Too bad as we’ve got a lot of wines I am sure are not available in liquor stores here. It’s frustrating because it would be an easy way to bring in some cash.

Also, if you are still interested in buying Beth’s book, Zed, I still have a few copies. Ditto with the wristbands – we still have a stock of them, too. Laura may also have some T-shirts for sale. As always, your donations are gratefully received. I honestly don’t know how we would have survived so long without all of your help.
I plan on giving you all regular updates as the countdown continues. And I’m sure we’ll bring our laptop to Seattle so that we can give you the news as soon as we have it.

In the meantime, we’ve got a busy week ahead. Tomorrow we sign the wills and power of attorneys, Tuesday I head to Port Angeles to pick up the wheelchair ramps I ordered on ebay (about 60% cheaper than buying from a local medical supplier), Wednesday we each have a medical appointment and on Friday afternoon Beth’s power chair arrives. They are going to do the programming (speed controls, joystick sensitivity, etc.) and hopefully the chair will stay here when they’re done. We’re really looking forward to Beth being able to use it. A busy week, but we really want Beth to find times to relax during it (no, that wasn't a joke, even though there are new home workers to train, and where is she going to find time to list items for sale?)

Thursday, February 19, 2009

I'm sorry about the 'Bad for being scared post'

I have deleted my post of this morning. Last night was very scary time for me. Beth was getting worse and I was feeling helpless. And when I am feeling helpless I either try to escape or control. I tried a little of both last night. But ended up still feeling helpless, scared and frustrated. So I tried to figure out how I was feeling by putting my words down on ‘paper.’ I published it because I wanted ‘a voice’, I wanted someone to hear all those screams of emotion going on inside my head. I loved Beth very much

The bleeding in Elizabeth’s ear scared me a lot. It was an ‘automatic go-to-hospital’ event. And yet Elizabeth wouldn’t. And she kept using q-tips when I told her not to, because I was scared and just wanted it to stop. Cheryl and Beth determined that it was likely that a spike in blood pressure ripped the eardrum. But all I could see was the blood that was coming out.

Beth didn’t take a break when we got up from the nap; she wrote emails. The worse she got the more emails she wrote. As time passed and there were even more emails, more passing out, her actions made me frustrated and angry. But the anger went away when Beth told me that she needed to let people know because she was scared she was going to die. She was on oxygen, and I had to use the ambi-bag but she wouldn’t go to bed. She was scared that if she died people would never know that she was thankful for their help, or that she cared. I knew she had already sent emails telling people these things, but with her memory and brain damage she did not. She could feel my frustration and asked, "Am I a BAD person for being scared?"

I kept a close eye on her as her hands turned black, as she had to use the oxygen re-breather but I didn’t stop her as it was important to her to leave these messages. But my feelings of frustration and helpless grew until I needed to write them down. To have someone, anyone listen to me.

Beth finished, and I pushed her to the bathroom. She had wanted to write a note to Cheryl but forgot, so as I helped her she kept say, "Tell Cheryl I love her. Tell Cheryl I love her."

I will be with Beth today as we promised each other than if Beth woke up, we would have an ‘us’ day. I am sorry I ended up deleting the comments from the other post, but that wasn’t the story, that was my scream of frustration. And to leave that up, would only hurt Beth, because being sick isn’t her fault. But it sure is hard to stand by helpless.

Saturday, February 7, 2009


It feels like a Ghost Town and I am a bit worried…

Since I posted my quasi-rant about energy vampires the number of comments to Beth’s blog and the number of friendly, checking in emails have dropped way off. They’ve dropped way off to the point where it is really bothering Beth and she is feeling somewhat abandoned.

I really didn’t mean for you, our friends in this blog community to go away. Please do email Beth and write comments to her. She may not always be up to answering but she still needs and wants to hear from you.

Wednesday, February 4, 2009

The Angry Caregiver

No not Linda… I, Cheryl, am the angry caregiver. I am dealing with a goodly amount of anger, resentment and frustration at the moment. I think I am in Mama Lion mode.

The phrase that sums it up is the one I said to Linda earlier this week… “I am doing my damnedest to keep Beth alive and people keep messing me up!”

I have had to use resuscitation methods to keep Beth breathing around a half dozen times in the last 24 hours. I have provided medical support through 3 grand mals and numerous partial seizures in the same period. This is way more than average for Beth at this point in her illness. The problem is the energy vampires.

Beth has very limited energy and it is dropping all the time these days. Not only does physical activity use up the energy but so does negative emotions and dealing with stress. The visit to the GP where we had to fight to convince him that Beth needs better pain management caused stress and sucked away energy. The extreme, unrelenting pain sucks away energy. The hate mail that shows up in her email from different sources sucks away energy. The clueless sales clerk at the bookstore sucks away energy. When the energy levels drop below a certain point Beth simply becomes too exhausted to expand her rib cage and breathe. She needs help so I or Linda do what is necessary to breathe for her.

Beth is struggling with quality of life issues. She has a rapidly changing condition with unrelenting and unrelieved pain. Every day her illness robs her of some aspect of who she was. Linda and I try to help her find reasons why she should keep going on and much of the time she wants to live and LIVE. However, there are times when the pain, changes, lack of energy and exhaustion make living seem like a very poor option. Sometimes after she starts breathing again Beth will ask why we brought her back, why won’t we let her go. At times I wonder if I am doing the right thing resuscitating her – am I doing it for Beth or for me? Then we get a good day and Beth tells me she is glad I “brought her back”. That helps, until the next time I am fighting to keep her breathing and begin to doubt again.

My anger, resentment and frustration stem from these things. I feel those emotions towards any person or event that sucks away Beth’s energy for stupid reasons. Emails and blog comments from you, her friends, are not in this category. Things that bring positive emotions to Beth help me in my battle to keep her with us. Differences of opinion which lead to open discussion and debate are good and I think Beth enjoys the intellectual challenge.

The things I resent and that make me angry are the email attacks that show up – the hate mail. I resent the emails from people who only email Beth when they need to have a place to unload their baggage and don’t seem to care how Beth is doing. I resent the time wasted in doctor’s offices where we receive no help and no indication that any help will happen. I resent time spent in meetings so we can be repeatedly told that they can’t help us. I resent the fact that the arbitrary rules about things like eligibility for palliative care are determined by the price tag rather than by the human need.

I am frustrated by the continuing problems of getting adequate pain management or treatment for problems like anaemia or even a diagnosis of some kind. No doctor or specialist seems to be willing to be the responsible one to make the diagnosis or state that Beth is terminal. I mean what if they are wrong? What if she lives 7 more months, not 6? Oh for fucks sake! Don’t they see how ridiculous that is? It’s just as ridiculous as claiming you can’t prescribe a stronger pain killer to a terminal patient because it can cause constipation. I say again… OH. FOR. FUCKS. SAKE!!!

Yeah I am an angry caregiver…

Sunday, January 25, 2009

No Perishables, Please

Hi everyone,

Just a quick note to let you know that all our mail is stuck in Port Angeles for two weeks while the Coho ferry is in dry dock for its annual maintenance. Please don't send anything perishable during this time as it will be all furry by the time we get it:)

It kind of sucks not having snail mail for two weeks but it means two things: Beth will have a weekend off from postcards and two, we'll have a nice pile awaiting us when the Coho is back on the water.


Sunday, January 11, 2009

Courage, Fear, and Loss

Hello, Cheryl here and I want to talk about Beth’s most recent post on Screw Bronze.

Beth did an amazing thing for someone who is fiercely independent and has always sacrificed herself for others. She is asking for help. That simple act of making herself vulnerable took an incredible amount of courage. She doesn’t ask lightly but she wants to live and she needs help to do that.

I know that many of you are hesitant to commit to one of the “chores” Beth has outlined because you are afraid of letting her down. I understand. I fear letting her down too. I look at how much she has gone through in her life and I don’t ever want to be in the group of people who caused her any pain and suffering. I just refuse to let that fear keep me from acting.

Abi suggested using a network system where a group of people agree to do a chore and then there is someone to cover when one person is unable to keep the commitment on occasion they can ask a member of their network to fill in for that time. I think it is a brilliant idea and will help people not over use their spoons or energy crystal lines.

Beth truly needs the help to change her habits. She keeps pushing herself at the same levels she did 3 months ago. Truth is she doesn’t have the reserves to do that. She doesn’t have the reserves to push herself at the levels of 3 days ago. She is rapidly weakening. I hope the Seattle doctors and some other referrals we are working on will get her some treatment to improve her quality of life and help with energy levels and pain management. We will keep you posted on that but Beth needs help NOW.

Yesterday Beth had a collapse. She required high flow oxygen from a non-rebreather mask (gets more pure oxygen into the patient) and I had to use the ambibag to breathe for her for a while. What concerned me was that her pulse was slowing and getting rapidly weaker. I was planning scenarios in case we had to do CPR while the ambulance came. I was wondering if this was going to be the end and praying that it wasn’t. Happily, getting the high oxygen concentration into her blood allowed her body to recover. Her heart rate is back to her normal for now. What brought on the collapse? We had a conversation. The simple act of talking for 20 minutes depleted her oxygen levels to the point where her body shut down and she was on low flow supplemental oxygen at the time.

I know we are going to lose Beth. I know it is going to be sooner than I am ready for. I know this loss is coming and I ultimately can’t stop it. That doesn’t stop me from doing what is necessary to let Beth live and LIVE as long as possible. Towards that end I keep trying to stack the deck in my favor. By having you help take on the tasks and make the commitments Beth has asked for, I can do a lot to stack that deck.

Here’s a
video by Train that I think fits the situation. Listen, read Beth’s blog, search your heart and help as you can.

Thursday, January 8, 2009

Oxygen, gifts and tears

It arrived! I braved the steady rain to pick up Beth’s brand new Inogen One Portable Oxygen concentrator yesterday afternoon. It’s a great little machine – much quieter than the Evergo we had borrowed for the Seattle trip. Here are most of the components – the machine, the power supply, a carry bag and the cart it fits on for people who would walk with it.

What’s not displayed are the adapter to use the machine in a vehicle (via the cigarette lighter) or on an airplane. These I have but weren’t picture worthy. What I am also missing is the second battery and external power charger which were ordered but not included. So, I’ve got another phone call to make, sigh!

Here’s Beth breaking the machine in, while sitting at her computer.

The top and hoodie she is wearing are two of the great finds from our Seattle shopping trip and I think she looks hot it them. You should see the new jeans hiding under my grandma's afghan - very sexy. Hot clothes aside, every time I take a picture of Beth I am struck by how much weight she has lost - mostly in her face - and it makes me sad to see her wasting away.

Right now we’ve got the concentrator beside her which is a good thing as with the old concentrator being in a separate room, she would ask me to turn it on and I would forget and Beth would be working for hours while her fingers were getting more and more purple and white. With the Inogen being much quieter she now has the power!

While reading the manual – I know, I’m one of the weird ones who actually reads manuals – they mentioned a satellite setting. Umm, satellite? What happens – can it beam oxygen to you? Well, I kept reading and basically it’s like a pager which allows you to be in a different room from the unit and turn it on and off and adjust the settings from the comfort of your chair. The satellite accessory is the conduit between the extension tubing (up to 25 feet) and the cannula tubing which she breathes through. I may have to look into this accessory in the future.

In other news… we’ve received many gifts from you, our readers, over the last few weeks and I just wanted to say a great big thank you to all. I’ve devoured my cheesy romances over the last two weeks. I have little discipline when it comes to them so end up staying up half the night reading – occasionally Beth ends up telling me to go to bed. Talk about role reversal!

The MP3 player arrived on the day our one remaining MP3 player gave up the ghost. This caused a lot of stress in our household as the MP3 is used on a daily basis when the sounds of life are too much on Beth’s sensitive ears. While we were opening packages the neighbours were making a lot of noise next door. Beth was able to download the songs onto the new MP3 quickly which rescued Beth from the noise, removed the panic and reduced the urgency in fixing the old one. (Beth was later able to revive it so we have a zombie MP3 as backup.)

We also got some great supplies for the postcard project – rubber stamps, postcards and stickers. We will continue to post the items we need the most for the project. We have a huge selection of general postcards and stickers which readers have donated. So much in fact, that I don’t think we’ll need more general stuff for months and months so please hold off sending any more. What we’re really lacking are anime girls, yuri and yaoi stuff and specific nature cards.

Beth spends a lot of time searching online for the anime supplies and has come up with some creative ways to source them. Let me share one with you… remember David the guy from Japan with all the cats? He sells shitajiki boards (laminated boards of anime pictures). When he found out about the postcard project he said he often gets postcards and will send them to Beth with any orders she makes. So Beth buys boards she wants (either for herself or for gifts) and as a bonus she gets postcards. David gets the cash so he and his cats benefit.

But with my reduced salary due to being on sick leave that’s put a real crunch in Beth’s buying. She’s been so conscientious about purchases to help me. Now being so careful is a wonderful gift to me but it also puts a lot of stress on Beth as it restricts her freedom and choices which in turn makes her feel like she has even less control over life.

Beth, being resourceful, found out that David also takes Amazon gift certificates as payment. We received a couple of certificates from readers and they went towards her purchases with David. We should be receiving our next shipment in a couple of weeks and hopefully there will be some great cards we can send to people. So if you ever want to send Amazon gift certificates in small denominations they will always be put to good use. It’s the gift the keeps on giving – it helps me, Beth, David, his cats, and postcard and gift recipients.

One last thing, I was listening to the radio the other day while running errands and heard a song called ‘I will take care of you’ by Amy Sky.

Amy writes in a commentary that music has tiny fingers, and can reach places in the heart that words alone cannot. What a great and accurate metaphor. Her song made me think of Beth and made my heart ache with grief, bringing tears to my eyes. Even now my eyes water each time I hear the chorus.

Amy mentions that a lot of people cry when she sings it and she was surprised to hear that people are grateful for the chance to revisit their own losses. “Far from making sorrow worse, every time you shed tears you actually accept your grief a little more. Our wounds need the dignity of our attention, in order to heal.” I thought this was insightful as I sometimes feel embarrassed by tears I let escape. Maybe I can take it easier on myself and let them fall freely every once in a while.

Beth, this one’s for you…

Chorus lyrics:
I will take care of you
the very best that I can
With all of the love here in my heart
and all of the strength in my hands
Your every joy I'll share
for every tear I'll be there
my whole life through
I will take care of you