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…