Will attended the recent Innovation & Excellence: End of Life Care in Residential Care Settings conference organised by the Irish Hospice Foundation. He shared his experience of spending time with his mother, Lily at her nursing home will more than 100 healthcare professionals in attendance.Will who lives in Dublin kindly gave eHospice permission to share his deeply personal presentation “Spending Time with the One and Only” here:
“My Mother, Lily, has been in a Nursing Home for three years this week. She is 90 years old and doesn’t mind who she tells!
I know this isn’t everybody’s experience but it is mine.
While I’ve learned a lot about communication, I’ve struggled with conflicting feelings about other issues: strangeness, acceptance
learning new communication skills, the purpose of visits and maintaining my Mother’s identity.
When my Mother went into care first it was like she moved to another planet.
We were strangers in a strange environment surrounded by strangers in an unreal suspended reality.
There seemed to be endless corridors and electronic one way doors. The bright lights and wipe clean furniture served only to punctuate the sense of
‘Somehow, I don’t think we are in Kansas anymore!’.
I’ve sat in the carpark after spending time with my Mother, drained to the point of tears, upset, unable to drive and often angry.
I was floundering – without the familiar anchor of home yet surrounded by the workings and reality of the home.
I was busy mourning the living loss of the most important person in my life.
I missed my Mum. No more cups of tea.No more cosy chats.No cream buns and a catch up on news and neighbours’ gossip.
No more privacy.
I am thankful to my partner (whom my Mother adores) who looked in from the outside and was able to guide me through these confusing situations. We discussed things rationally. Family was great but too much emotion was clouding judgement.I was just too close.
Thankfully, not being at home meant there was no more worry of scalding kettles, of night time wanderings or the ever present fear of a break in and the resulting trauma. I had forgotten to look around and acknowledge:
“Hang on a minute, this is actually a good thing”
Soon after and totally out of the blue, my Mother took my hand in hers and said: “I’m very happy here. I feel safe and I’m not lonely. I know you all have my best interest at heart. You will make sure I’m looked after well”.
That was all I needed. Once I accepted that, what I got in return was peace, security and for the first in a good few years a worry free sleep
I am fully convinced she felt able to say that because she sensed that I had changed my perception of what her needs now were.
My Mother’s time in a nursing home is categorically not the end of her life. I see it more like the start of a chapter, towards the end of her life.
We have lots of living to do – we just have to find a way to do it.
I realised that if I was to continue to chat to my Mother, then I’d better start learning a language she was able to understand.
I have often described that learning experience as: “Turning the keyboard upside down”
The vocabulary is there – you just have to look harder. Construct your sentences differently.
When you think about it, most of our day to day conversations are about the recent past or the near future.
See how familiar a sentence like this just rolls out in general conversation:
“You’ll never guess who I met last week. I’d only been talking about them at the shops when I met Suzie. She had a lovely tan from her honeymoon. Don’t you remember yer man what’s his name….. blah blah blah
or the classic filler in conversation everyone has with their parents/colleagues/ friends
“ Yep, we go on the 16th. Fly out at 6am. First few days in Northern Spain then it’s back to the house after two weeks of sun and sangria so Joe can finish the garden before the Winter kicks in”.
Just imagine the amount of connections a person with dementia has to make to understand any of that …….
And all so that you feel better for your visit!
Instead I make statements and draw out responses from my Mother. ‘That’s a lovely tree outside the window there. I think it’s a cherry’.
‘I like that cardigan. That colour looks lovely on you’.
‘Do you like these boots? They were on sale in town – I couldn’t leave them. Half Price they were’.
I cannot tell you how many conversations have developed into peels of laughter from a pair of Penney’s loafers I got for a tenner.
When I’m around the Home I’m observing. I’m not watching – I’m observing.
I’ve seen the Duty Visitors – the watch checking, paper reading, hand stroking professional Tutters.
I’ve seen the bored grandkids and great grandkids who are dragged in “for special occasions” and who sit around stiffly in their Sunday Best, crowding into a personal space they don’t inhabit anymore, youngest baby slapped onto the lap, for “the photo”.
The photo which will be used to describe “How Happy Nana was to see us all”.
I’d safely bet Nana might have been happier seeing any of them, one on one, on any given Tuesday than all of them together for twenty minutes one Sunday in June.
Next up are the “Visitors”. These are done and dusted in 15 minutes. Job Done – no interaction – back to their own life. Hurrying down the corridors muttering:
‘Don’t ever let me get like that. Shoot me before you put me in one of these places’.
I actually heard that as I was walking back from the garden with Mum one sunny afternoon. We had just been admiring the lavender.
And I’ve seen the ones who don’t bother showing up any more – ‘Sure she doesn’t even know I’m here” – one man told me sadly.
I try to enthuse that “it can be different. Just Try Harder!!”
On some days, If I sense Mum isn’t feeling chatty, I whip out the iPhone and we watch Fred Astaire and Ginger Rogers.
We marvel at Cyd Charisse dancing. Mum will almost always say: “Oh! she had legs eleven and she knew how to use them!”
It’s a simple Youtube clip – but it is familiar. It’s another connection and in those few minutes it means the World to both of us.
I keep my Mother’s presence fresh by regularly posting selfies.
It’s become known on Facebook as
“Spending time with the one and only” Just because she is in a Nursing Home doesn’t mean she is invisible.
My Mother has quite the fanbase for a 90 year old. In the beginning I would always make sure Mum had her lipstick on and her trademark pearls. I noticed after a while that my Mother had her lipstick and her pearls on. That simple few minutes extra it takes when assisting with dressing really makes me happy.
It’s a simple gesture but it keeps my Mother’s identity alive – and that is worth diamonds to me.
There is a huge importance in maintaining identity. The following will hopefully explain, in real time, how a simple mix up in a Laundry room can escalate into something which is quite upsetting. Some time ago I dropped by at a random time.
I said discreetly to a member of staff whom I hadn’t met before: “Excuse me – but that lady there in the corner is wearing my Mother’s dress. Perhaps you could deal with it please. I’m sure it’s a simple mix up”.
She looked at me quizzically, with a raised eyebrow and said: “Really? Are you sure? Lots of Them have flowery dresses’.
I replied “Yes. I am sure. I’m sure because I bought it”
You see, we had a gorgeous day that day we went to Town to get that dress for a Family do. We had lunch and a coffee and giggles galore. It was a memory bubble of a day.
I have happy memories of my Mother in that dress and I know my Mother has equally happy memories of that day and of wearing that dress.
I won’t have any of those memories spoiled by a throw away comment about ‘a flowery dress’
I’ve learned to be an advocate too.
Sometimes I’ll need to be Mum’s voice. I’ll know when something is off kilter – a look, a hesitation or something not quite right.
I’ll speak with the care givers or the nurse on duty. They know what is going on while I’m not around. They will tell me if Mum has been drinking enough water and reassure me when there is nothing to worry about.
I changed my Mother’s doctor of 30 years.
I had no qualms about doing this. With all due respect, doctors and nursing staff are after all, providing a service.
The doctor who sees mum now is in in the Home at least four times a week and is very thorough.
I have the utmost respect and faith that everyone working in the Home has my Mother’s best interest at heart. I often hear them chatting with her and engaging with others.
I’ve learned that shorter visits are less tiring. More frequent visits at different times means I get to meet and interact with all staff.
I do miss a sense of privacy.
I’d like to have a space where we could go and sit – on a fabric sofa in a room with a coffee table and soft lights.
Somewhere we could get into that familiar space of chat I’d like to be able to recreate the familiar Irish ritual of
“Cup of Tea with The Mammy”
And one last thing.
Now, when I go see my Mother in her room, I turn our chairs away from the bed. If she does not see the hospital style bed during our chats she never questions asks about Home.
Instead we look out the window and chat about the sky or the garden. We wonder and don’t care, what time of the day, month or year it is.
Every visit, before I leave, I make sure to thank the staff I’ve met that day for the marvellous job they are doing caring for
My Mother … The One and Only.
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