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I’ve been living with a diagnosis of Alzheimer’s disease for more than four years now. In this time, I’ve organised my home, what I do and where I go very differently from four years ago when I could cope with the outside world quite well, whereas now it is much smaller.  
 

What I want you to know about living with dementia

Now that I have this disease, I need to convey how I am approached and how I wish to be approached.
 

My diagnosis needs to be accepted

If I had told you that I had cancer, you would perhaps ask, ‘is there a cure? Are you going to have treatment? How long have you got Granny?’ It would be taken very seriously. Whereas in my case, it is Alzheimer’s disease, and there’s no cure and I’ve been diagnosed quite late. When I tell you this, it is passed off and not taken seriously, and this takes me to denial.
 

Your denial is painful to me

When you say to me, ‘oh you’re just forgetful, you’re getting older,’ that is so painful. I have a disease and it’s a disease of my favourite part of my body! My brain that I love and value so much isn’t working for me the way I would wish it to.

I need you to know that although you can’t see it – it’s as if I’ve had a leg amputated. It’s the same value to me as losing a part of my body and I need you to say, ‘yes, we hear that you have an illness,’ rather than passing it off.

My eldest son David said to me, ‘you have a marvellous working of this, Mum. I see this is real and it is painful for you, and I see how hard you are working. I see how hard you are needing to work to function efficiently and you are doing a great job’. That was wonderful for me because I am working terribly hard and I am delighted that he knows how hard I am working.

I want you to be real about my disease. I have something that is real. I am working very hard to overcome it and I need you to acknowledge it and say something to me like my son said, ‘you’re working really hard mum and you’re doing a good job’.
 

My responses are not what I want them to be

I have structured my world to cope with how I am, but one thing that I can’t cope with is my emotional and spoken responses are not what I would wish. I can’t govern my emotions, you need to know that what I’m saying is the best that I can do. I can no longer control these or my facial responses. If you ask me a question, I might give you a sharp answer which is unlike me, or I might come out with a confusing answer. I find this very distressing.

Please understand this when I tell you that sometimes I’m going to sound sharp, and sometimes I may sound foolish – you just have to accept that’s how I am.
 

Dementia needs to be heard

I was sitting with a group at bowls and one of the members said, ‘wouldn’t it be the worst thing in the world to have dementia – I would rather have any other disease’. It felt like every other person at the table was nodding and thinking the same; that dementia is horrible.

People don’t want to know about it, hear about it or get it.  

People can accept when someone is not good at a sport or an instrument, but when it comes to the brain, people attach it to one’s worth.

Dementia is not awful, poisonous, or dreadful. I’m as happy as I’ve ever been in my life four years into dementia and I’m coping with my world as it now is and I ask for you to hear me and know where I am.

 

What it feels like to live with dementia

I am living without short-term memory. I use visual cues which are very important for me. I don’t know how long they will last but they are very successful for me now. If I go the fridge, I do a hand gesture as if I’m buttering bread so that when I get to the fridge I remember what I’m getting. I have all of my clothing lined up visually for me and labelled. I can manage sequences of four. If I’m cooking, I can do four things in order, so I print out a recipe and I break it into four.

The hallucinations and visual aspect that I experience are extraordinary and cause me emotional distress and anxiety.

When I open the door of the toilet, I think there’s a huge hole in the floor because the floor is black. I know the floor is black but I have to say to myself, ‘Heather, that is your dementia. That is what you have and that’s what you have to accept’ and it’s very painful accepting that type of thing.

A room with all white walls is too much for me – it’s an overload. I have to tell people, I’m finding his too much, I’m going to go outside.

I think a lot of people are ashamed of their dementia, and try to continue on in that white room and behave normally instead of acknowledging and saying, ‘I’ve got dementia and I just can’t cope with all of you in this room and I have to leave’.

I’m sorry if that sounds overwhelming but because I have a disorder that confuses my brain, it won’t come out as nicely as I would want it to, but I do have to leave the room now.

It took me well over 12 months to speak up about when I’m uncomfortable. After being diagnosed, I was deeply ashamed. I’ve always thought of my brain as my best tool. I worked with a marvellous counsellor at Dementia Australia who I saw once a month and I got sheets of paper with ‘acceptance’ written on them and stuck them around the house as I struggled with accepting my disorder.

 

How you can support me

After 12 months of having a good look at myself, I realised that if I could tell everyone where I was and where my dementia was, how I am and that I’m walking around with that amputated brain but I’m still here and I need you.

I got it into my head that I could say, ‘look this environment is not suitable for someone with my disorder’, or ‘you’re speaking too quickly and I can’t cope with that, slow down’.

I put myself out there by trying to explain how the outside world is coming in, and I do this in little bits, explaining exactly where I am and helping you to see.

Grandchildren, if you’re speaking to me excitedly it may be too fast for me to understand. I will point to both my ears and say too fast, too much, slow down, talk to me slowly. 

If I’m comfortable and you want to be comfortable with me – then you need to know where I am.

It’s a distressing disorder and I think a lot of people abandon hope. In my first year after being diagnosed, I used to let people do for me, instead of coming out strongly and doing for myself what I needed.

Some days you’ve lost it all together and you need to just say sometimes it’s an off day and it’s just one of those days. But I’ve continued to fight on, I still want to do all those things like make a cup of tea. So I look at what I will place around me, how will I organise things so I can make a cup of tea that’s safe and successful.

I need you to continue to acknowledge at all times where I am.

It’s lovely when you ask me how I am – and for acknowledging where I am.

Indeed you can live well. When battling something as difficult as this and you’re still able to say you had a lovely weekend with your grandchildren and you enjoyed seeing everyone and doing things, it’s a rich and lovely world.

Heather

 

Want to read more? Check out these articles: 

What changes can I expect? Dementia affects people in different ways and at different times. So, what changes can you expect if you are caring for someone, especially in the later stages of dementia? 

How do I cope with the changes of dementia?  Experiencing changes may lead to a range of different emotions both for a person living with dementia and family, friends and carers. We explore some ways to process these changes. 

How can I live well with dementia? More than two-thirds of people living with dementia live in the community. When supported to live well at home, these people are less likely to enter residential aged care prematurely for a variety of reasons.

How can I plan for the future? Dementia affects people differently. One person may begin to lose the ability to handle money at an early stage, while others may keep these skills much longer. So how do you plan for these changes? 

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