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…