A Letter

This is the letter that I have written to the nursing service which was supposed to have supported us in taking care of my mother in law at home...  (although the actual letter, of course, includes names).  I haven't sent it yet ...so I would appreciate any feedback - am I being too big a *itch? Unreasonable?

I have been asked by both T, the non idiot nurse, and by the case manager (different agency, that purchases the nursing services from BHC) to write a letter.

Dear Ms. S.

My mother in law, D., died this weekend. And while we understand that this was inevitable, and that had we received more appropriate service, D. would still be gone, we do have serious concerns about the lack of professionalism and support we received from the on-call nurse.

On Friday evening, D. was visibly in pain. She was moaning and crying out, her right hand was badly swollen (something we had not seen before), and we were unable to get anything at all into her. I did try to give her the codeine which her doctor had prescribed, but because she was unable to swallow, this resulted in choking and coughing. This, of course, added to both her distress, and to mine. Any relief the codeine that did get into her brought her was extremely short lived, and within the hour, her cries were again becoming louder and more intense.  

When my partner came home from work at around 9:30, we made the decision – for the first time – to call the on-call nurse for advice. Surely there would be something in the comfort kit ….   When we received the call back from A., I expressed my concerns and asked for guidance. She asked if there was morphine in the kit, to which I replied that yes, there was, but that it was to be injected, and I have never given an injection. Her response was – and I quote: “Well, I don’t feel like driving all that way.”  

She told me that she would call back shortly, and when she did, that she had spoken to T., who knew D. better, and they had decided that I should give an acetaminophen suppository and the morphine could be started during the day, when her breathing could be monitored better.  And that was it – no suggestion that we could call back if it wasn’t enough, or reassurances, or any other expression of support.  She didn’t feel like driving.

The comment has, at this point, become somewhat of a family story – a joke, almost. But of course, it really isn’t funny. 

 Because she didn’t feel like driving, we are left to wonder whether everything that could be done to keep D. comfortable in her final hours was done.  Because she didn’t feel like driving, R. feels as though “he dropped the ball at the end” – that he should have been more assertive, done something…  

He has cared for his mom for many years. I’ve helped for the last four and a half or so, but he was doing it alone before then.  We have done everything we could to make her life comfortable – and because A. didn’t feel like driving, at the end, he feels that he failed her.  And we are left to feel as though she experienced more pain than she needed to, and to wonder if we could have done better for her.  

While that one comment stands out as a glaring example of unprofessionalism, it was not the only instance that we experienced. A. also did the intake when D. was readmitted this time. After several phone calls and postponements (from ‘between 5 & 6’ to after 9 p.m.) when she did arrive she was clearly extremely tired and not at all happy to be here. She told us repeatedly that she was too tired to bother with all of the paperwork, and that she would do it the next day, or get someone else to finish up later.  She shared a great deal of information with us about the challenges and activities of her own life, and about how tired she was – and these things were clearly the focus, as opposed to D.’s needs. 

When she left, she said that she would return the next day to put a dressing on her hip and finish up – she did drop by with the dressing on Sunday, but clearly was not at all interested in either finishing the intake, or doing anything other than complaining about how long it had taken her to drive home the previous night, put the dressing on and leave. Had we had to deal with her on an ongoing basis, I likely would have been more concerned – but since we were not in her area, I let it go – a decision for which I am now very sorry.  

The other issue which I think should be mentioned is that it is very disconcerting to try to discuss life and death issues with someone on the phone when that person is busy dealing with her child. If, when I called for support, it was the nurse answering the phone directly, I would be more tolerant – but given the system whereby she called me back, I would expect that perhaps she might have called without the child crying and carrying on in the background.  

At the very least, I feel that BHC has some training and supervision issues. Of the three nurses who provided us services, the only one who was always professional and always supportive, was T. She – T. – is so well suited to her job, and I am so grateful to her for the support she gave us throughout.  You need more nurses like her – people who would never ever dream of telling a dying woman’s family that she didn’t feel like driving for a half an hour to relieve her pain. 

If you require any additional information in order to be able to address these issues, please contact me at ......