Living with Alzheimer’s

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My mother had Alzheimer’s, I think she probably had it for a lot longer than anyone realised. Her illness became apparent in a jigsaw of forgetfulness not long after my son was born. It took another year or more to get confirmation via diagnosis. In retrospect I think that she knew she was ill and had carefully narrowed her world in order to manage it. Like many adults I live several hours drive away from my parents. Caught in my own life I didn’t notice the changes.

Dementia describes a group of symptoms which impact on brain function, causing forgetfulness, loss of capacity and is caused by diseases of the brain, Alzheimer’s is one such disease.

Finding excuses to avoid the unknown, my mother preferred set routes, to set places. Obviously finding a calm in the familiar as more and more became unfamiliar. She stopped driving for plausible reasons, she never liked it much and preferred the bus. We accepted her reasons, without question. The reality was that driving had become too unpredictable and complex.

Throughout my entire childhood, I lived along the route of the same bus. We used the portion of the route that took us to the nearest big town; Bromley. When I was little, we stayed on the few extra stops until we reached Grandad’s house. My mother lived along that route for almost all of her married life, using it to shop and regularly to see her father. Repeating the route one way and then the other towards home.

For my first 11 years, for home, we got off the bus at the same request stop. Then we moved house and from then on we got off a stop half-a mile further up the route. The stop by the red brick corner house with the little wooden fence, top of the hill, before the road narrows and the bus turns right to the busy main road. That was, and is, our stop.

Marks and Spencer in Bromley was her shop of choice, it was a trip done hundreds of times. One morning she took the bus to Bromley, she browsed the rails in M&S and unhurried, got on her bus home. At some point the journey, the very familiar journey, became unfamiliar; confused, she got off the bus at the place we’d stopped getting off when I was 11. She knew the stop and the place, but it wasn’t right and she was unsure why. Where was home? I imagine she she felt silly and maybe a bit upset. A woman spoke to her and somehow patiently unravelled what had happened. They waited for the next bus, which they took together, worked out the correct stop, got off and the kind stranger walked my mother home. Whoever that woman was, she was a Dementia Friend.

Going out independently was important to my mother, she continued to take short walks, until she fell over in the local high street. Someone called the police before leaving her. She probably just needed a few minutes to right herself. The presence of the police distressed and confused her and after that she gave up going out alone. As the illness advanced she’d sit quietly, for long hours in the same chair, in the same room, with the same view.

With an ageing population more and more of us will be touched by Dementia. It is not an illness exclusive to the elderly, early on-set Alzheimer’s can impact on people in their 50’s.

Dementia Friends aims to get more people to understand the illness, we might not have the time to walk someone home, but we all have patience. A small amount of understanding goes along way.

Please visit the Dementia Friends site and find out more about becoming a Dementia Friend, watch the short video and sign up and receive a booklet. Make a cup of tea and take few minutes out to increase your knowledge of illness that will touch most of us.

Dementia Friends particularly want to encourage schools and young people to understand more and have created a resource pack. Even after diagnosis my mother attempted to hide her illness, aware of the stigma and lack of understanding around it. Hiding something so fundamental is very lonely. A younger generation that is equipped with the skills to communicate, understand and be more patient, can change that. Why not encourage your child’s school to use the resource pack in classes or an assembly?

Advice from my experience.

Support from your local Alzheimer’s society. As much as the illness is isolating for suffers, it is isolating for carers. The Alzheimers society offers services for both. Caring is demanding and exhausting. Support from people who can point you in the right direction through the maze of support you may need; emotional or physical. They understand.

Lasting Power of Attorney is a legal agreement that allows and appointed person to make decisions on behalf of someone particularly in relation to finance. We didn’t organise this and when my mother became too ill to manage money, the legal position was much more complicated and difficult to organise. I now have LPA for my very fit and able father, in case he becomes ill.

Simplicity. We take the complexity of life for granted. We walk to the shops with the intention of dropping dry cleaning, picking up a birthday card, food for an evening meal. A long the way we think of something else we need, call a friend, reply to a text. Plan to stop for a coffee. My mother asked endless questions, for the answer she’d just forgotten, for reassurance, to straighten her confusion. Leaving the house had to be simple, with one focus at a time. A walk. Then the high street. Then the supermarket. Buy dinner. Anything else grabbed along the aisles was a bonus. If that went well we’d introduce the idea of a coffee, to somewhere she knew well, she liked coffee. If not we took the same route back home.

Contented Dementia: Oliver James. I found this book really useful.

My Mother died in March 2012. This post is dedicated to her. Dementia is a very lonely place.

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Disclosure: 
I’m working with BritMums and Public Health England alongside the #BritMumsDementiaFriends campaign. All editorial and opinions are my own. Visit the Dementia Friends site for more information and resources about coping with dementia among family and friends. 


22 Comments

  1. Kate Holmes

    Thanks for sharing your personal story Gemma. Very good of you and helps to get the message across as to why Dementia Friends is so important. Good tips too.

    Commenting for myself and on behalf of BritMums and thanking you for taking part.

  2. Jfb57

    Hi Gemma,
    Great post. I’m a Dementia Friend but not doing anything. I wondered about Reblogging this on Julia’s Place, obviously with links back here etc.  Let me know your thoughts

    1. helloitsgemma

      Julia, I would be really flattered if you would re-blog it, particularly with your access to school. That’s very kind. Knowledge is so helpful, you might not be doing anything now, but come the moment, you will have the knowledge.

  3. kate gunn

    Wonderfully written post as always Gemma. Brought a lot back to me. We eventually recognised my Dad had dementia after we reported that his car was stolen – then finally realised he had simply forgotten where he had parked it. All the little instances leading up to this had gone unnoticed. After that it was a steady and sad decline. I love the idea of Dementia Friends. 

  4. Emma

    What a fantastic cause for such a sad sad illness.   I would love to get involved more with something like this when we come home.  I feel cut out here in terms of being able to volunteer for stuff…  

  5. Kelly

    Sometimes I want to write a comment but the words fail me. I cannot imagine what this must be like, when it happens to you, or to someone you love. I will read all the links. I love the idea of a Dementia Friend. I resolve to be more aware and less cross at what seem to be ‘doddery’ old people who just seem to be in your way when you need to get something done or be somewhere.

    1. helloitsgemma

      We aren’t a society that values the elderly, I think it is so easy to not have the time, often it is so much more complicated – there just isn’t enough information out there. 

  6. Amy

    Oh Gemma, this is so beautifully written but desperately sad. I’m sorry that your poor Mum went through dementia but I’m glad you’ve written about it. It needs to be said and talked about and we all need to know more, frankly. Dementia Friends is such a very important cause and thank you for highlighting this. x

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