Palliative Care

I remember the last time I felt the earth moving under my feet, and the way all the stabilising gyroscopes rocked and realigned in a new, colder configuration. It seems like a very long time ago.

Just over a week ago I had a meeting with a Palliative Care Nurse from a local hospice who provides advice and training to the Care Home staff in End Of Life Care. Rosemarie had already had an assessment (to which I was not invited) and this was apparently the follow up meeting to talk to me about....something. I know what palliative care is. I know the sequence of events that precipitated this. 

I felt the gyroscopes wobble slightly.

I was not particularly looking forward to the meeting because I know how I react to these things. Most of the time I have to keep it together because there is stuff to be done, but when I have to talk directly to the issue of Rosemarie's condition I find the emotions welling up and I have difficulty speaking. I am not embarrassed about this, mostly frustrated that I so easily lose control of my facial muscles and tear ducts.

I carried into the meeting a few pieces of shrivelled up anger about not being there at the assessment but the nurse was so pleasant that I quickly let them go.

What I wasn't prepared to let go was the strong feeling that we were crossing some line for a bogus reason. Rosemarie's recent hospitalisation seemed to have been more significant to the Care Machine than to me. I had been told two years ago that we had crossed a line into the last stage of Rosemarie's life and to think 'in terms of months not years'. Two years ago.

She didn't lose nearly three kilos in weight or become seriously dehydrated because of three days infection. Her situation was flagged up to the Safeguarding Team by the hospital because there were concerns about the general standard of her care. The progress of the disease is presenting the Care Home with new challenges, but isn't that what a care home is for?

I am not convinced the problems with her weight and hydration are entirely the result of her underlying condition. I think the Care Home have collectively taken their eye off the ball.

But this is where it gets difficult. I didn't (and don't) want to come across as denying the reality of what is happening. I know she is dying, but it is not the Alzheimer's that will actually kill her. As far as I can establish (and I discussed this with the nurse at length) the deterioration in the brain is responsible for failure in body functions. We are at the stage where aspiration can cause lung infections, and the downward spiral of declining appetite and declining hydration. The SALT thought that she was two weeks away from death when she visited. She has forgotten how to walk, speak and manipulate things.  She is losing the ability to swallow safely. She is having seizures which introduce the risk of choking. 

The nurse said the next stage was likely to be increased problems swallowing, more aspiration and more chest infections.  

I have had so many years of looking for solutions to her problems, trying to handle the situations, that I find it hard to accept the idea that it is time to stop that.

I said as much. Alzheimer's - at least Rosemarie's manifestation of it - is not like cancer or other diseases that palliative care professionals talk so easily about. The goal of managing pain, providing comfort and optimising her quality of life sounds great in principle, but what does it mean for Rosemarie in practice?

She can't make her needs known, it is not clear what distresses her, and we have no real way to evaluate her quality of life. We don't even know how much she knows about what is now happening to her. I don't think she recognises when her family are around her, she doesn't seem to respond to what used to be her favourite music, her favourite foods have been taken away from her, she cannot read, draw, follow stories, watch television, look at pictures, talk to old friends or visit once loved places.

So what is the plan exactly?

I can see the other part clearly, psychological and counselling support for the family, spiritual support if wanted (no thanks), bereavement counselling and so forth. 

But for Rosemarie?

We have been addressing and managing her symptoms and practical difficulties one by one, expressly for the purpose of trying to improve her quality of life. That's what the last five years have been about. What is going to change? I am not sure I got an answer. 

The only alternative as far as I can see is to somehow restrict the management of the symptoms, in effect 'turning of the machine'. What would that mean? Tranquilising her so she did not know what was going on and waiting for her to starve to death or catch a fatal infection? Nobody is suggesting that, to be fair, but they are not exactly suggesting anything else either.

I think the meeting was basically to make sure I was not in denial, and prepare me for things to get worse at some unspecified rate.

So the meeting was calm and supportive and I cried more than I wanted to and we talked about Rosemarie ending her days in the Care Home rather than hospital (home is not an option) and that the staff were very good and well trained and would make Rosemarie as comfortable as they could (shouldn't they be doing that anyway?) and here was her phone number if I had any other questions and wanted to talk. 

The nurse was very considerate and tried to be helpful but I left the meeting no lighter, no wiser, with red eyes and a reacquaintance with the cold, dead space in my stomach. 

The gyroscopes were ok though.