I often question how Registered Nurses, Clinical Co-ordinators and particularly Doctors (who may only see the person for 10 minutes once a month), make informed decisions on medications for people with advanced Alzheimer’s, particularly when they cannot communicate with the person and often for whatever reason, do not or cannot consult with primary family carers.
I’m talking about people like my mum who cannot speak for themselves, who cannot express their pain or discomfort in words, and do so only with body language. Is this body language observed or ‘listened’ to?
I fear not. My biggest fear and concern is that (in my opinion), additional medication is prescribed when not necessarily needed. Of course there are times when the person is very much in pain and needs additional pain relief, but this CANNOT always hold true.
Quite often the person needs emotional support. They need a companion. The essence of the person is still there and is reaching out, communicating with the limited resources available to them. Such support does not take a lot of time and I believe this is one critical and vitally essential element that is often missing in care.
How long would it take for one nurse to do a quick head to toe check BEFORE calling the RN for extra medication?
Is the person comfortably positioned?
Are they hot? Are they cold?
Could they be thirsty or hungry?
Is there surrounding noise that could be causing distress?
Surely this does not take too long and many times, as I have done with my own mum, a drink, or a piece of fruit, or changing her position in the tub chair is all that is required to settle her down and make her more comfortable, rather than one more dose of Ordine.
Ordine is Morphine and I constantly worried that mum was given too much of it unnecessarily. I was told that Ordine is ‘good for them’ as it stimulates their appetite – great for mum as eating is the only pleasure left in her sad life – BUT IT ALSO DOPES THEM OUT and causes constipation!
I had no leg to stand on because in sharing my feelings and concerns, the fickle finger of blame pointed to the disease. It’s the Alzheimer’s. Is the Alzheimer’s therefore being used as an excuse to not provide focused and centred care?
So how do we find a balance that is best for the person with advanced Alzheimer’s?
When it seems too easy for nursing staff to just give another dose? “That’ll settle her.”
How can we know and trust these decisions are well INFORMED?
I have asked this question directly and have not received an answer.
Who knows? “They” do.
But “they” of course will never admit that this is the easiest solution for staff who don’t have the time or don’t take the time – 20 seconds even – to ensure there is a simpler fix for the poor defenceless person at the mercy of “their care”.
Is this negligence?
Is this just “the way things are”?
It’s the system and you can just like it or lump it.
Is it us? The families, the daughters, and all the other carers, the ones who suffer just as much as the poor helpless person with advanced dementia that need to just shut up and put up with it?
I say NO.
This is a serious issue and I don’t have the answers.
I invite you, the reader, to think about all of this as you go through your own Alzheimer’s journey with your loved one.
Try to see past the pain, heartache and helplessness, and if you can, find even the smallest thing ‘that can make a real difference’.
I appreciate that nursing homes are not all the same.
Don’t be afraid to ask questions. Be prepared to receive unsatisfactory answers, and celebrate the good ones. Always question medications – their purpose, benefits and effects. Keep yourself well informed and above all, don’t give up on that wonderful person who needs your love and companionship now more than ever.
My question still remains; how do people working in nursing homes (to whom we are paying lots of money) make INFORMED decisions on medicating our poor defenceless loved ones that are living with advanced Alzheimer’s?
As I said above, I don’t have many answers but I do have heaps of questions.
How about you?
What would you do?