Posted on 21/05/2018

Dementia, my nan, and me

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Dementia, my nan, and me

We hear a lot about dementia – there are over 850,000 people in the UK experiencing it right now. But, what is it like when someone you love has dementia? Our blogger Emma lost her beloved nan to Alzheimer’s disease last year, and here she shares her family’s story…

My nan was a wonderful woman – she was always full of life and fun. She had a wicked laugh and got the giggles almost every day about one thing or another. She was diagnosed with Alzheimer’s disease in 2010. That same year, she had a fall at home and broke her hip quite severely, which led to her having a partial hip replacement operation. I remember thinking at the time that the drugs she was on seemed to send her loopy! She was disorientated, confused and, to be honest, she was quite scary at times. Unbeknownst to us, Nan had Alzheimer’s disease, and the medication was making her symptoms worse.


Dementia: the start of a new reality

 

The hip replacement was not successful as Nan developed an infection. To save her from experiencing another surgery, the doctors decided not to operate again, leaving her without her hip intact, which meant she had to use a wheelchair permanently. This presented lots of difficulties at home, where she lived with her son (my uncle). They had to have lots of new equipment fitted around the home, including a bath lift and commode, which she didn’t like using.

Eventually, my nan got used to living with her disability but, despite this, we realised she was still not herself. The first real dementia symptom we noticed was that she was repeating herself a lot. We made a joke of it at first, or put it down to old age, but it was very persistent and to be honest, a little frustrating to listen to! She would literally repeat something she had said only seconds ago. We took her to the GP who conducted some simple tests and, after being referred to neurology for further testing, Nan was officially diagnosed with Alzheimer’s.

Although her repeated speech continued for a long time, all the family just got used to it. My nan’s disease also seemed to progress very slowly compared to other people, which we are still so thankful for, as we got to spend many years with her whilst her symptoms were not too severe.

On some weekends, my sister and I would take Nan out shopping, and it was during these times together that we would notice more symptoms of her Alzheimer’s, such as obsessive behaviour. Nan would often become preoccupied with cheap jewellery and would insist on buying lots of it, which she rarely wore! It wasn’t a problem, just a quirk of her condition.

Nan was able to come to both my wedding and my sister’s wedding, as well as my hen party, where she was still the life and soul, giggling away at everyone happily. I don’t think she had a clue what was going on, but she still had her twinkly eyes and smile (and a sherry or two!) so it was obvious she was enjoying herself. She also got to meet and know her great-grandchildren, which we are very thankful for.


A change in health and personality

 

My mum (her daughter) took care of Nan most days whilst my uncle was at work, but eventually he left work to become her full time carer. Nan loved to go out of the house, and they rarely spent a day at home – she liked to be travelling in the car or out and about at the shops. I think if she had been physically able to walk, she would have definitely ‘wandered’ and gone travelling around the town on her own.

Her general health was mostly fine, but she did start to get recurrent urinary tract infections and she was admitted to hospital a few times due to these and also fainting episodes. She started to become increasingly confused as time wore on and it got harder to hold a conversation with her. She became very attached to my uncle, displaying lots of anxiety if he wasn’t with her.

Over the years, her personality completely changed. She became more aggressive in what she said and how she acted. She would swear and call people names, and although we never took it to heart, my sister and I did feel it necessary to stop taking our children to see her as often. It always amazed me that, even when her memory had almost completely gone, she could still remember and sing nursery rhymes, and one of my lasting memories of Nan towards the end of her life, was her singing ‘Wind the bobbin up’ with my 1-year-old daughter and clapping along happily.

Her memory did decline and she got people’s names wrong, or forgot who they were. My uncle also told us she didn’t sleep well and shouted out a lot through the night. She had little appetite, but still managed her favourite Philadelphia on toast and chocolate biscuits every day.

 

Journey’s end

 

We celebrated Nan's 90th birthday at the end of 2016, and the following year she moved into the late stages of her condition, which seemed to happen much more quickly; she deteriorated quite rapidly towards the end of her life. Her speech started to decline and the few words she could manage were often very slurred. My uncle was a complete hero and ensured Nan was well looked after at home for 7 years, until she went into hospital for the final time. She spent a couple of months there due to urine infections and problems with her kidneys, which led to her developing pressure ulcers from lying down all the time.

Towards the end of her life, Nan was moved to a care home as she was no longer able to talk, and had to be spoon fed. She slept most of the time and didn’t really know what was going on around her. She passed away very peacefully on the 4th June 2017 and I miss her every single day.

Alzheimer’s for our family was a unique experience, as it is for every other family. There were highs and lows, and challenges – especially for those family members providing day-to-day care. It can be difficult to find the time to be with someone who doesn’t necessarily even know you are there. It is hard to be patient when they are having mood swings or shouting at passers-by. It is hard to really see the person, amongst all the symptoms of dementia and odd or difficult behaviours. Some days I do think that I will only remember my nan’s condition, or how she was at the end of her life, but even that is not so bad… I remember the last time I saw her before she died, I stroked her face when she was in her care home bed, and she was still able to smile a little – she was still in there, and still felt the love.

If you or a family member have dementia and need practical or emotional support, the Alzheimer’s Society provides a range of ways to get in touch with them for advice, as well as opportunities to talk to other people affected by dementia.

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