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…


JaneB said...

I'm hardly surprised you're angry! Hope you manage to channel it in positive directions and scare some of these morons into action....

Anonymous said...

totally fuck! sorry, for your pain.

Donna Lee said...

I can't imagine how anyone could have negative things to say about/to Beth. No, she is not a polyanna nor is she a "good crip", always putting on a smiling face. What she is is a person. A REAL person with good and bad and so what?

I'm sorry you all have all the health system crap. You certainly don't need that on top of everything else. As a recipient of Beth's post cards ( and I treasure each and every one), I appreciate her and what she's trying to do. If positive thoughts and vibes carry any weight, you have all of mine.

Lisa Moon said...

Thank you for the post, Cheryl. It was very well written and VERY much deserves to be said.
As a Victoria resident, I share in my own less urgent ways, huge anger and frustration with our suck-ass medical system. The fact that they are not giving Beth decent pain medication is simply criminal.
I wish I had some magic thing I could do or say to help...
All I can say is that you're all in my thoughts and prayers.
Thank you so much for caring for 'our' Beth.
You and Linda are true angels on this Earth - and I loved meeting you both; you're amazing, amazing women. :)

Anonymous said...

Understandable and justified anger Cheryl. So incredibly frustrating for you all. That seems like an understatement actually!

Glad you can share your anger here - wish there was none to share!

Lene Andersen said...

Yep. Yepyepyep. Much as I wish we lived closer to each other so I could actually be there in person for Beth, I am frequently relieved that I don't. Because I want to maim the energy vampires (her doctor especially). If you are not going to be helpful, then at least don't actively hurt my friend. Bastards. The mama lion-ness, it's going around. And I just hear about it. Can't imagine how difficult it must be for you and Linda, who see the damage up close, to not jump across the room and hit these people.

Optistatic said...

Grrr. People can be very annoying sometimes. I am sorry that it is all so very challenging at the moment.

I get angry when I think of people deliberately saying unkind things to Elizabeth. If what they were saying were actually an appropriate thing to say, it would still be inappropriate to say it because there would obviously be something wrong. If you see what I mean. Why can't people just try to be kind?

FridaWrites said...

Cheryl, what a lot of difficult issues you are all navigating through.

Your care for Elizabeth is a blessing. I hate it that some really unnecessary circumstances are taking their toll on her (and you and Linda)--the GP and refusal to give pain control (exasperating!!) and the hate email (why would someone use their time in such a way?).

The Canadian care system seems like a lot of bureaucracy set up to avoid actually helping anyone. Goodness. You've every right to feel angry, resentful, and frustrated.

Raccoon said...

So, tell us how you really feel.

Sometimes, you just want to call the doctor before hand and ask "are you actually going to do something this time, or should we not bother?"

Tom P. said...

Hate mail? Are people really that stupid that they would send hate mail to a person who is sick? Actually, yes, people are that stupid. People are even stupider than that. Perhaps you could make an entertaining collage of stupidity and post it on this blog? And include names and home addresses or email addresses, of course, so we can express our appreciation of their stupidity to those people.

Neil said...

Cheryl, I can imagine how you feel. Perhaps you could work up a very generic email to send to every hate mailer; something like "Thanks for your recent email. It's good to know people like you care about the health issues Beth is facing. Beth doesn't have a lot of energy and can't reply personally to most emails, but since you're a fan of her blog, we're sure that you'll understand that she appreciates your positive thoughts and good wishes."

Send that to EVERY hate mailer. Maybe they'll give up and go away. But I doubt it.

Sending positive energy for you and Linda, as well as SuperYuriBeth.

Love and hugs,

Dawn Allenbach said...

You have every right to be angry. Beth is not getting the care she needs, and none of the professionals give a shit. It pisses ME off.

*gentle hugs*