Mums Dementia Journey
Written by Ambiance Founder, Diane
The journey of dementia can be scary, confusing, and frustrating. But it can also be meaningful, filled with love and laced with humour.
Mum was diagnosed with dementia in 2015, although we had observed a decline in her physical and cognitive abilities years earlier, subtly at first and more obvious as the condition progressed.
We had noticed mum was more regularly forgetting dates and times, turning up at places on the wrong days, becoming disorganised at home and not attending to her personal care.
Mum had always dressed so smartly, her hair and makeup beautifully styled, finished off with spritz of her signature perfume. She was so full of life, humble and always helping people less fortunate than herself.
It was sad for us to see the change in her demise and the emotional distress it caused her, particularly when she found herself doing things that she had no recollection of, or reason for doing.
I remember vividly the day I found mum stood soaking wet outside church waiting for the doors to open for Sunday mass and how distraught she became upon hearing it was only Saturday.
One morning I received a concern of safety call after mum’s front door was found wide open, she was later found by my daughter walking through a carpark in her nightwear and slippers having brought a single bread roll. Linking arms, they happily walked home, it was always kinder to step into mum’s reality.
We started to check mum’s fridge and cupboards almost daily having observed her throwing fresh food away, sandwiches she said she had eaten found going mouldy in the strangest of places.
With gentle persuasion mum came around to the idea of accepting some help. We arranged Carers to visit three times a day but within 6 weeks this had broken down, mum adamant that she wasn’t having anyone else.
As a family we took on more of the caring role devising a weekly rota to ensure mum was visited at key times during each day.
‘Music played a special role in our life’
Every Monday I would ring ahead to say that I was on my way as mum loved having the water running and towels warming on her radiator in readiness for her bath. The next two hours were filled with hilarious moments and laughter, mum loved to sing- her bath sponge a substitute for a microphone, apply too much body cream and choke us both with the amount of deodorant she sprayed.
Three days a week mum attended a day centre run by a group of volunteers who became like a family going above and beyond when mum’s dementia progressed.
Our local community became our extended family. If mum arrived at the coffee shop without her purse staff would happily make her a milky drink and if it was raining arrange a taxi to take her home.
In November 2016 mum was admitted to hospital with a urine infection during which she developed delirium. Mum was not drinking enough and despite our best efforts went longs periods only sipping water. She always felt the cold and had her heating on high, the combination resulting in her becoming dehydrated.
Episodes of delirium were soon to become a familiar feature in mum’s dementia journey, with it the realisation that mum now required constant care and supervision. In agreement mum came to live with me and I left my job to be with mum full time.
It wasn’t always easy, we had to adjust to a new way of living requiring patience and tolerance but as time went on, we adapted to our new routines.
Routine and predictability were important, sudden changes would be really unsettling bringing on bouts of restlessness and constant questioning requiring redirection and lots of reassurance.
In March 2017 mum suffered an intestinal bleed and admitted to hospital where she was diagnosed with stomach ulcers, she had lost a lot of blood. Doctors didn’t feel it was in her best interests to undergo an intrusive procedure, sensitively advising palliative care.
Arrangements were made for mum to return home the following day, however the next morning I received a call asking me to return to the hospital. Before I’d reached the ward, I could hear mums voice who to my amazement was sat up in bed laughing manically, calling out to people. Despite requests to speak to a doctor I was informed mum would be moving wards where she would undergo a blood transfusion. Following the transfusion mum was discharged home, the chance to speak with a doctor never materialising.
‘It was very distressing, seeing a completely different character within the same person’.
I appreciated it may take time to settle and adjust but never expected the significant changes in mum’s personality, Mums memory was much worst, her speech very muddled. There were sudden changes in her moods with outbursts of aggression directed at me coupled with long periods of silence or ignoring me.
It was difficult period; I was mentally and physically exhausted. Until you’ve been there and done it you don’t realise the strain.’
At my wits end, I rang mental health services and an appointment was made for a psychiatrist to visit mum at home. The psychiatrist diagnosed mum with fluctuating delirium, best described as a sudden change a person’s mental state over short periods of time which had been overlooked in the hospital despite recent training. The delirium was now accelerating further deterioration in mum’s dementia.
Having better understanding of mum’s condition enabled us to think how best we could support her. Initially this involved me taking a step back to reduce any anxiety around me, other family members supporting her more closely. In time mum started acknowledging me, became less accusatory and a closer relationship returned.
‘Thankfully it never got to the stage where mum didn’t know who was in her company – that would have been more traumatic.’
We continued to support mum to live an enriched life, on good days attending the day centre and church, all understanding of the changes in her personality, particularly when she made rude comments to them, laughter always being the best response.
With each episode of delirium mum lost more skills, eventually requiring full support will all aspects of her care. She started to struggle with textured food as her swallowing and speech deteriorated, similarly her mobility, requiring a hoist for all transfers in the house and a wheelchair when out. Mum’s sleep pattern became more erratic and it wasn’t unusual to be up almost hourly each night to reassure her.
At each stage we adapted and valued the times we spent together. We made photo albums, created plays lists, and invited people to visit who were important in her life.
We’d go out for drives, play her favourite songs, dash off to McDonalds for milkshake fully knowing she would only manage a few sips, seeing the sheer joy on her face a sufficient reward.
In August 2017 mum made one last pilgrimage to Lourdes thanks to the caring nurses and doctors who worked tirelessly to make it happen, it wasn’t without difficulties but testimony to their hard work and dedication she arrived home with a look of contentment not seen previously.
This was the last time mum left home, her condition quickly deteriorated and for her final few weeks we cared for her in bed. More frequently now the delirium was taking over, with longer periods in a state of unconsciousness. District nurses visited most days and mums’ doctor weekly during which a bond was forged.
As much as I looked to them for support, they looked to me seeing me as the expert. They spoke open of their limited experience in supporting a person with dementia at the end their life and one with such complexity. So, we learnt together mum always leading the way.
Mum loved being surrounded by family and we still had many happy and hilarious moments, but more frequently she loved the solitude of her own company.
Mum was just as content looking out of the windows at the trees blowing in the warm air. We lit scented candles, played music and more often just sat quietly holding her hands.
Each morning we would wash and massage her body with her favourite body creams and apply warm flannels to her joints to prevent cramps whilst waiting for the moments when she would awaken. The nurses always amazed as mum suddenly a woke as in only a light sleep greeting them with a smiley ‘hello’.
When awake we sang, reminisced, and spoke of how much we loved her, giving her permission to go when she was ready. She always replied soon, the 17th September being her chosen day.
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