Saturday, 18 April 2015

Palliative Care Team. #atozchallenge Care for the carers.

Two days after her 73rd birthday my Mum took her final breath. She had Alzheimers and Motor neurone disease. For her final 3 months I was her main carer. A privilege I am grateful for and will cherish forever. This years #atozchallenge theme will focus on being a carer / care-giver.


Remember to care for the carers.  

Palliative Care Team





Palliative care is a speciality field of mostly non curative, system management. 


Mum had a multidisciplinary team including staff at a Hospital and The MND association. A Neurologist, GP, Nurses, Pharmacists, social workers, occupational therapists, physio's, a dietician, speech pathologist, a volunteer hairdresser and more. None of them knew her.


The carer has to manage them all. They all want to know the answers to similar questions. There are different ideas about what works best. Mum didn't want the house full of strangers. She could've had a masseuse every week. She wasn't interested so I refused a lot visitors.

I rang her GP and pharmacist most often. I took notes and arranged for the rest to phone me. Except for the hairdresser, I called her every month.  

I was told that Medical teams seek guidance from patients and families. I went on a Facebook rant one day. What about the families that don't have trained nurses or health professionals in them? How do they know the right questions to ask? How do they know what to do, how to do it, what's important and what's not? 

The Social Worker said sometimes those families find it easier. They do the best they can with what they've got. I guess some people are natural carers.  

We had three appointments about Mum's 'End of life care plan.' 

There was some confusion. It's really just a 'Not For Resuscitation' letter to give to the ambulance or mortician at the end of her life. It never arrived in the mail. The Palliative Care Nurse team confirmed her condition when the ambulance arrived.  

There was some good tips. Use a wide brimmed cup to reduce the risk of aspiration, so the patient doesn't have to tilt their head back to drink. 

And some mishaps. I had to wait a week for a return phone call. A week is such a long time -- that goes by so fast when you're dying.  It was to arrange her final 'End of life care plan' appointment. Lucky it wasn't important. 

We didn't call on the team often but it was a great support knowing they were available. Except some of them on Friday afternoons or public holidays, and during the Summer holidays. Death is rarely convenient. 

Mum's positive attitude, the way she welcomed and entertained strangers in her house and saw them out to the gate, left an impression on a quite a few of the team.   

They all played a role in her end of life story. My favourites were the pharmacist for her hugs, and the volunteer hairdresser. She always made the biggest difference. 



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3 comments:

  1. Hi Ida .. I'm not sure we have that level of support here .. but it must be on offer - the worst thing is I think - my uncle went into the Hospice, but they discharge you after a fortnight ... so he ended up dying in the Nursing Centre - at least the same one my mother was in - which made it easier for me. It wasn't brilliant from the knowledge point of view ... but the care was fine. We coped .. well I did ..

    I'm pleased your mother had such a wonderful rapport with the hairdresser and the pharmacist ... it's been an interesting time .. and so also good to read your different circumstances along the journey .. cheers Hilary

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  2. Carers are CEOs, Ida. I address these experiences in my "Lion at the Gate" and "Drop Cloth" posts. You are fortunate to have had such good help. And, yes, I was shooting in the dark all the way. But, my hospice team were great at helping me to know what questions to ask and they answered my patiently.

    Thanks.

    Samantha Mozart
    http://thescheherazadechronicles.org

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    Replies
    1. Hi Samantha, I am looking forward to reading your posts. I always felt that part of a good nurses responsibility is helping people ask the right questions.

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