After the passing of her nan, Eileen, Mandy reflects on the lack of professional support her family received following Eileen's diagnosis. Mandy explains why her experiences have made her more determined to raise awareness of dementia, and why she's taking part in Memory Walk.
Before my nan was diagnosed with dementia, she had three strokes. The third one was a bad one and meant she spent most of her time indoors as she couldn’t walk properly.
Following the death of Nan's partner Peter from a heart attack last year, she had carers coming in to help her around the house and to assist with things such as cooking.
I was very close with my nan - she was the best Nan anyone could have.
She was a good listener, always there for people, and loved to laugh. Despite some issues with mobility, Nan didn’t really have any major problems with her memory and would talk about current affairs with ease.
She would occasionally forget my mam or aunty's names and sometimes struggled with speech, but we just put this down to old age or as side effects from the stroke rather than anything more serious.
UTI and going into hospital
In February 2022, Nan started showing some signs of having a urinary tract infection (UTI), mainly because she was going to the toilet all the time.
Nan's carer had called an ambulance as Nan was feeling unwell and started to become a little bit breathless. She was then admitted to a local hospital because of the UTI.
We visited Nan at her house the day before she went into hospital, and she was talking fine and walking around as normal.
Two days later when we went to visit Nan again, she couldn’t talk properly, she couldn’t sit up unaided, and she was very confused about everything.
Nan was speaking about things that didn’t make sense and had asked me to help her escape from hospital. It sounded like she had delirium. She had also lost a lot of weight in just a few days - all fat disappearing into skin and bone as she became unable to feed herself.
She looked physically very different and the change in how she was acting was massive in just a couple of days.
Getting Nan's dementia diagnosis
At the hospital they did a head scan, which showed some parts of her brain were more damaged than normal. She was then referred to a psychiatrist to have memory tests.
During these tests Nan wasn’t able to say how old she was, when the war ended, who was Prime Minister etc.
Before going into hospital with a UTI she would have been able to answer these questions pretty easily as we always talked about current affairs. But after just a few days she couldn't.
It was at this moment that the doctor informed us that my nan had dementia and that she only had between six and 12 months left to live.
Lack of professional support
When Nan was first diagnosed with dementia, I was left feeling frustrated at the lack of information and guidance given to us by the doctor and other healthcare professionals at the time.
The hospital didn’t tell us anything. They just told us that she had dementia and that she only had less than a year to live, but they didn’t explain what dementia was or really what would happen next.
The way Nan's last couple of months were handled was really difficult to witness.
Nan was meant to be assessed face-to-face within four weeks to decide whether she should go into a care home or back to her own home but with extra care. But this assessment took four months and was actually done over the phone.
Nan deserved better care
While waiting to be assessed, Nan was put in a temporary care home a couple of hours away from her family and the hospital she was originally admitted to. This meant we could barely visit her.
During her time at the care home, she had two chest infections and caught Covid. She also wasn’t able to stretch her legs like she was meant to.
They just weren’t providing Nan with the proper care that she needed and deserved.
Nan was passed between different social workers, and they didn’t seem to care much when we spoke to them.
The last time she was admitted to hospital, close to the care home and miles away from us, we got a call telling us Nan was seriously ill and probably wouldn’t make it through the night.
Halfway there we got another call saying she had passed away. Nan ended up dying alone without family near her, just four months after she was diagnosed with dementia.
If I could go back in time, Nan would have been better if she had gone to a hospice rather than to a care home miles away, as there was no chance she was going to go home.
The care home didn’t treat her right.
Finding support online
I had to find my own support and advice as it wasn't given to our family by any of the healthcare professionals we had spoken to throughout the experience. While searching online, I came across the Alzheimer’s Society website.
I was able to get the information I couldn’t get elsewhere, such as how to cope when a relative has been placed on end-of-life care or how to deal with grief. I learned how to communicate with someone living with dementia and deal with difficult moments.
From my experience, doctors need to explain things better and signpost people to support.
The impact dementia has on everyone is huge and handling both the emotional and practical elements can be really difficult. My experience of Alzheimer’s Society has been the best.
Without it we wouldn’t have had the help and support we needed, and we wouldn’t have been able to cope with the loss.
Why I'm taking part in Memory Walk
I’m doing the Memory Walk in London as it’s a good way to honour my nan's life and to help other people who’re going through a similar situation.
I want to raise awareness of dementia and let other people who know are affected or grieving that they are not alone.
More information and advice needs to be given to families when they are told their loved one has dementia. I'm hoping that sharing my story and taking part in Memory Walk will help to raise awareness on this issue.
Join Mandy at Memory Walk
Sign up to one of 25 walks this Autumn, and walk to give everyone affected by dementia the support they deserve.