Newest Review: ... put the bun cases out on the tray ready for Grandma and Joanne to put the mixture in. This is something that my 4 year old niece now loves... more
My Experience of Alzheimer's Disease
Member Name: bluejules
My Experience of Alzheimer's Disease
Disadvantages: Watching the person you love disappear
Warning: this is a long review.. don't feel like you have to read it.. I just hope that it is useful/comforting/informing to at least one person who may be going through something similar.
I have finally reached 100 reviews on here so I thought I would write about something close to my heart... My Grandma. Sadly she has Alzheimer's and she is no longer the woman we once knew. As I started to write this I wasn't sure I was going to publish it but I know that my grandma would like me to share our story if it could help others in a similar position. In writing this I am not looking for sympathy or pity.. I just wanted to write our story to ease some of my pain.... I found this extremely difficult to write but it has also been comforting too.. remembering my grandma as she once was (which in day to day life can be difficult).
Alzheimar's disease is awful. I didn't ever appreciate how truly awful it is until it affected our family. "Alzheimer's disease is the most common cause of dementia, affecting around 465,000 people in the UK. The term 'dementia' is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions."
As the disease progresses, they may:
* become confused, and frequently forget the names of people, places, appointments and recent events
* experience mood swings. They may feel sad or angry. They may feel scared and frustrated by their increasing memory loss
* become more withdrawn, due either to a loss of confidence or to communication problems.
== The Past ==
~ The Early Years ~
My grandma was born in 1934 in the town where I currently live, and has one sister 9 years younger than her. She left school and started work at the co-op shop in Ashington. She loved this job but left when she married my granddad, her next door neighbour, in 1958. In 1961 they had my dad, their only child and my grandma, was a housewife looking after her in-laws (including my grandad's sister who had Down Syndrome) as well as my granddad and dad. I remember as a child hearing so many stories from my grandma's past, from her childhood to the early years of her marriage through to all of my dad's childhood. I heard some of the stories so many times that I could retell them as if they were my own.. sadly as it's so long since I heard them, some of them are now a little bit hazy and are likely to be lost forever as Grandma is in no condition to be able to tell them now. I think though, as a family we have the essence of the most important ones.
~ My Childhood ~
My grandma and granddad were both a huge part of my childhood as my parents worked full time so I spent most of my days at their house.
The earliest memory I have of my grandma is being at their house one day with my big sister, Joanne (who's 10 years older than me). We were baking fairy cakes and I desperately wanted to help. I don't know how old I was but I know I wasn't really old enough to do much in the way of baking cakes so it was mainly my grandma and Joanne doing the baking. My grandma gave me a very special job to do though and this made me feel very important! I got to put the bun cases out on the tray ready for Grandma and Joanne to put the mixture in. This is something that my 4 year old niece now loves doing. As I got older I was allowed to assist more and more.. until eventually I was doing it all myself, under supervision.
We often baked, all sorts of different things, my grandma was a wonderful cook. We used to go to their house every Sunday for lunch (right up until I was about 17, when it was just getting too much for her). She always baked a cake or a made a trifle for desert. I love Sunday lunches at grandma's house. I sometimes used to sleep there on a Saturday night and I would wake up to the smell of the beef cooking in the oven and the sound of my grandma pottering around in the kitchen. I used to help her set the table and dance around the sitting room putting on singing and dancing shows for my granddad, while I waited for my parents to arrive.
In the summer holidays we had lots of days out all over the north east of England.. days to country villages, shops, the beach, the park, churches, castles, picnics.. you name it and we did it. We used to go to Amble, a small fishing village, in Northumberland. My grandma would make sandwiches and we would take some pop and some plastic bowls and buy a bag of chips between us. Sharing a bag of chips seemed like the most exciting thing in the world... on reflection, now as an adult, I realise we probably shared a bag of chips because they couldn't afford to buy us all our lunch but I didn't mind one bit!
We used to go for trips out in the car and I usually had my nose in a book in the back of the car. Sometimes though we would play games such as I Spy, or I would look out the window for rabbits (in the country).. my grandma always used to say if we could catch a rabbit I could keep it as a pet.. this was the most exciting part of our trips out.. it never once occurred to me that we wouldn't actually be able to catch a wild rabbit.. I looked for one every single time.. we never did catch one though.. I don't think we ever even stopped the car.. but there was something magical about the thought of catching my very own pet!
I had my first pet at my grandma and granddad's house: a hamster called Hammy! He lived for three years and when he died we got a new one, a girl called Millie. After she died, aged 2, I just had my goldfish - one of which lived for 9 years!! I've never really had pets at home, apart from fish and I loved both of my hamsters very much.
== Late childhood- adulthood ==
As I got older I gradually started going to my grandparents house a bit less.. after-school clubs and friends started taking over. I did still go there several nights a week after school as my granddad used to pick me up from school and my grandma made my tea.
As the years passed by Grandma gradually got more forgetful and began writing herself notes. I think my granddad covered up a lot of how bad things were getting and it wasn't until 2007 that she actually went to the hospital and got a diagnosis. She was already well along the way of the early stages and they prescribed her Arecept tablets to slow down the progression. She recently stopped taking these as they said they were no longer working. We've seen a change in her since she stopped taking them, maybe it's a coincidence or maybe they were still doing a little bit of good?? It's a progressive disease so she is obviously going to get worse anyway and we are blessed to have been able to have 'her' with us a little bit longer with the benefits of the medication.
I don't really remember when we 'lost' her completely, as it has been a gradual process. We've still had some lovely times together, including last Christmas and a couple of sunny days in the garden this summer. The sun really seemed to cheer her up and she laughed the most I'd seen her in a long time.
My sister's children are all so nice with her. No one has told them explicitly that Grandma isn't well but they just seem to know and treat her so well. Even my 4 year old niece seems to know there's something a bit different about grandma and she is always extra nice. It's lovely to see them together, especially my niece as she always seems to make my grandma smile. It also makes me a little sad to think that they won't ever know her as the grandma I knew but I we are lucky that she's still been a part of their lives.
== The Present ==
In some ways, well in many ways, my grandma has already left us and there is just a breathing shell of the woman we knew. She lives with my granddad and attends a day centre 4 days a week and has carers coming into their home every morning. My granddad is 86 years old and does remarkably well to look after my grandma at home. We (my parents, myself and my sister) all do as much as we can to help too, and they come to our house every day. Grandma is currently very unsettled and wanders around all the time. She also has recently started self harming (by hitting herself in the head, so hard that it is bruised) and repeatedly says she wishes she was dead. She's on medication to keep her calmer and although this has reduced the regularity of the self harming, it hasn't stopped it completely.
It's been a while now since we saw any glimpses of my actual grandma and she talks in almost incomprehensible sentences. Occasionally she'll say something that grammatically makes sense but it usually doesn't make sense to the listener. We can't ask her to repeat what she's said as she doesn't know so we've found it is best to just agree with what she is saying or give general comments to acknowledge we are listening.
She still recognises us all but she doesn't seem to know who we are in relation to her or to each other. She usually knows who my granddad is and can usually remember our names but it really depends on the mood she is in.
== The Future ==
Who knows what the future holds? I'm sure we all have a fair idea of what the late stages of Alzheimer's involves so I don't want to go into it too much. But what I will say is that things are not going to get any easier.
My grandma's grandmother spent the last days of her life in a hospital for people with mental health problems and was classed as having 'senile dementia'. I remember that as a child I knew this was something that upset my grandma and the words 'dementia' or 'Alzheimer's' were taboo words in grandma's house. Therefore even though my grandma might have 'known' she might end up with a dementia, I'm so glad that we didn't know it would happen or we would spend our whole lives worrying about it.
I don't know what the future holds, and I don't know if my grandma will actually end up in a residential home. But what I do know is that we cannot worry about what is going to happen as that won't stop it happening. As a family we are living one day at a time and still cling to the memories and good times we've had.
I could spend my days crying about our loss (even though my grandma is still alive and technically with us) or I can live my life each day with a smile on my face, knowing that I am truly blessed to have had such a wonderful grandma in my family for so long. Life at the moment isn't how I would have chosen it to turn out but life is a rollercoaster and you have to take the good with the bad.
I see my grandparents as much as I can (most days) and I help out as much as I'm able to. It is hard but I know my grandma wouldn't want me moping around so I live my life to the full. I still love my grandma so much even though she isn't the woman she once was.
I'm studying speech and language therapy and we've learned about Alzheimer's on the course, from a communication point of view. This has helped me understand it a little bit more.. and it has made me more aware of how to speak to my grandma. She is not able to understand more than one piece of information at a time.
I'm going to finish with a poem I wrote 2 years ago. I wrote it in my journal one night when I was struggling to remember my grandma as she was. I have not shared this with anyone (not even my parents as I know it will probably upset them) and I wrote it only for comfort. This poem sometimes makes me cry but, it often makes me smile and remember the good times too..
Where's the grandma I used to know,
Who cuddled me tight and watched me grow?
Who baked cakes with me and combed my hair,
Always smiling with time to care,
A game of schools, hospitals or shops,
A heart of gold she loved us lots,
Who cuddle me in when I was poorly off school,
Who sometimes let me bend the rules,
Who read me stories and knitted clothes for toys,
A wonderful woman who's brought lots of joy,
Making sandwiches for trips out in the car,
The beach or the park, we sometimes went far,
Buying me shoes, clothes or sweets,
I was always spoiled with lots of treats,
Memories I'll always hold dear to me,
That's why it's so hard to watch what I see,
A woman I love and once knew so well,
Looks almost the same but becoming a shell,
Losing memories with each passing day,
I love her lots but don't know what to say,
She's been there all my life,
Right from the start,
My wonderful grandma, forever in my heart.
Thanks for making it this far.. to the happiness and health of you and your family.. treasure every moment and live very day like it's your last :)
Summary: An awful disease