Thursday, March 29, 2012

The devil that can't be beaten

How do I say what everyone knows but doesn’t know at all: that degenerative diseases are the devil that can’t be beaten. Linda struggles to keep the rent coming, the food and medicine there. Even on the best of days it is like cycling uphill, always uphill for three years now. There are sick days but never ones that are paid for, nor vacation days.

I am exhausted, Linda is exhausted. “Help me..” she said after the medical alert woke her, and she went first to tell them I needed no help. I had woken in the living room after days and weeks of stealing from day after day to try and find a good day, I was on the couch overheated, alone and unable to move.

‘Please Linda, I have to be allowed to get worse.’ I had said before I must have passed out. For weeks and months I mark where I am falling further and further behind, in organ function, in daily function. She hears this as criticism, while her silence makes me feel alone.

‘Help me…’ she says when she tells me that I must get up myself. Which is what I do, for this year I have minimal to no practical physical assistance beyond meal prep, and changing pain patches every 3 days (I had the doctor change that as illness and our mixed schedule meant that when it was every other day Linda would forget, and I would scream, and scream unending for hours until the vocal cords gave out). I get myself up when the alarm I set goes off; I get myself to the bathroom and then to the study, and I have no interaction, no direct assistance from workers beyond meal prep and washing clothes. They have not assisted showering even at the Y this year, nor, in the last few months accompanied me.

It is easy to feel isolated and in an unfair situation. But then isn’t Linda in an unfair situation as well? And beyond that, there is no physical assistance, no going out that I don’t initiate, or go myself. And with Linda working 12 hour days, how is she to find the time or energy to do more? But now I have no workers who can tell when I have overheated, or when told, know what actions to take. Unless I direct what to do, what buttons to push in other rooms, nothing occurs. It is not good, it is indeed horrid, but it is what life is. I have the pain and the pushing to be up, though now I am focused and obsessed with trying to ask Linda, the Palliative people, the GP, anyone to have an idea or make changes for when things get worse. But everyone says they ‘hope I go in my sleep’ which is not a good thing to hear when awakening overheated once or twice a week in winter and early spring. And when lying there, the heart not beating enough to allow me to wake, nor to let me sleep but continue minute by minute, hour and hour in pain.

I do not wish to be reduced to selfishness but am exhausted, in pain and scared every waking and sleeping moment. In my dreams last night I walked a city alone, exercised alone, to wake unable to move and alone. Making it to the study, I fall, and my arm is trapped under my body as I fall, it sounds the medalert alarm, and while I can’t move, still overheated, as without telling Linda to bring a cool pack or a cold neck pack she cannot act, exhausted herself. She says things are fine to the medalert people. I ask why she doesn’t call VIHA, the night RN, the palliative RN, the emergency response team, but she has decided they will only pass the buck to the EMT’s, the EMT’s to the ER, and the hospital cannot help this. Maybe she is right, or maybe she feels it isn’t worth the trouble and she wants to sleep.

This is what life has been like for 9 months or so, but worse, as the disease gets much worse, and I cannot keep ahead of the most basic things. So I don’t see outside for two weeks, don’t see out a window. Linda puts me in the study and goes to bed, and so I don’t ‘talk’ to her but a few minutes a week. And every day I fall further behind, and I don’t know what to do, and there is no one to call. I have to think about taking pills and overdosing because soon I will not be able to take care of myself, not be able to answer Linda’s or the workers calls to ‘help them’ and the ‘solutions’ book I worked with Linda to make has not been opened by her for two months, not to add or find solutions.

If I was in Limbo, that would make sense, but I am not. I get worse, and the stress of weather, the stress of a trip coming up when I don’t know how I am going to sleep much less eat or shit makes it more of a nightmare than a dream.

Back when Linda had stress time and paid counselling and sick leave and vacation time she talked about reading to me in bed when things got to this stage. Last year I could have had a bed day. Now there isn’t a worker trained in how to have one, much less the fans, hospital table or pills set up to allow it.

This is what I have not been talking about, though it has grown from something I had the luxury of thinking about to the question of how much will I bleed and from where before I sleep enough to be strong enough to shit. I am tired of helplessness and losing 2 days for going for wheeling on the beach. I am tired that Linda can see it week after week but not recognize that I am unconscious and so try to wake me every 40 minutes for 4 hours when I sleep past 7 or 8 hours on the day after I exercise. I don’t know when I am going to fall ill, or be unable to wake, and Linda, so exhausted that she cannot adjust to anything new or different as it occurs. If there was a hospital to check into, or a group to take over, I would; for both of us. But no, if I was a senior citizen I could have a non-profit take over basic caregiving decisions, but no, there is nothing for those with terminal illnesses.

And any organizations that did exist were wiped out 3 years ago when the government of British Columbia went bankrupt. And we, along with all the small non-profit agencies and the jobs of those with them, are ‘friendly fire.’ It is just some bleeding out takes longer and so unlike moving, as many did, we stay and linger, somehow.


Tom P. said...

Hello Beth... it has been a long time since I have commented on your blog and I wish to apologize. So much has been going on in our lives. Michel's Syringomyelia had looked like it stabilized but the new MRI shows it is getting worse. Her doctor wants her to start using a cane because she does have times when she can't remain stable but she is fighting it and refuses for the moment. Meanwhile so many things have been going on with Mikey. The combination of his aggressive behavior and Michel's increased weakness finally led us to find a residential school for him. Fortunately we found a great school (but 2-1/2 hours away) that he loves but we miss him so much it is breaking our hearts.

Trying to read about you when you are just getting steadily worse when things are getting steadily worse here as well (although nowhere near as bad as things are for you and Linda) is tough. But I do follow your blog but it is hard to say something to you. What do I say... Don't worry, things will get better? Life sucks? I wish I could help you somehow? Just know that I am out here reading and wishing that everything could get better for everyone.

Lorna, Bob and Liam said...

Sometimes it's hard to know whether or not you need or want suggestions or feedback, or whether or not you just need to be heard.

As Tom P. says, it's pretty hard to say anything of any value, it seems, other than "we're so very, very sorry you are going through this" and "we're listening."

I'm sorry if this is in any way discouraging, or not respecting your incredible will to live, but I'll ask: is this the time to contact the palliative care people? I know you are terribly angry that they will not agree to life-prolonging measures, and understand you have not been ready for anything else they can offer. Are you now at a point where being cared for and having access to pain control might be enough?

I wish there was something else, and perhaps there is--hope springs eternal--but I can't think of what it might be given everything you've said. Given your incredible spirit, though, if there is an answer I know you'll find it.

We love you, and bear witness, and hold you in our hearts. I hope this particular version of hell can pass in some way, soon.

Lorna, Bob and Liam

Elizabeth McClung said...

Tom: that's heavy news, I am sorry to hear about Mikey and hope you can see him often. Sorry also to hear about Michel; I would recommend a cane because there are lots of cool canes, like the retractable one I have (try a mountaineering store) - even in kyoto, across from the Castle of the Nightengale Floor is a shop just for tricked out canes. The cost of falling can be anything from a subdural hematoma to more likely, a sprained shoulder, or broken wrist. I tend to think canes are cool but it is Michel's decision -- hope if she gets one, you can send a pic of the cane.

Lorna: Linda agreed with what a wrote, and I just wanted to write about what happens when things go on, and you stop hearing from people who are ill and there are complicated conditions.

I would but the palliative care unit is not current accomodating for degenerative illnesses, I simply couldn't stay there as they would have the temp at around 85-88, which is 20 degrees too high, and I would go into heat exhaustion in a day and then heat stroke. Going into a palliative unit was the plan and yes, now would be the time. however, I can't go into a situation I know is a form of suicide by apathy - with several days of extended suffering for me.

There is hope in small things, and terror in large.