A letter to my mum with dementia: "I miss you so much".

Dear Mum

It is an odd thing to say as you are still physically here but I miss you so much.

[My mum was officially diagnosed with frontotemporal dementia (FTD) at 60, she had shown symptoms a couple of years beforehand and had lost her job as credit controller in her late 50’s as she kept making mistakes. She’s 63 now and this is a letter to her which I wish she could read or understand.]

I miss that when we come up to visit you don’t ask me as soon as I’ve walked through the door if I want a cup of tea, your constant updates about the neighbours and people from work even though I barely know some of them, your strong opinions on anything and everything which almost always resulted in us having at least one argument every time I came home as I hold equally strong opinions, you walking into the spare bedroom unannounced every night to say “goodnight” when we came to visit and you always showing me new pairs of shoes.

These days when we come up to visit we are lucky if you look at us as we walk through the door or acknowledge us. I’m pretty sure you don’t know who I am despite dad announcing our arrival and repeating who we are numerous times.

I catch you looking at me sometimes and I can see the confusion in your eyes, like you are trying to place me but you can’t think where from. Even if I smile at you or speak to you when I see you staring at me you rarely respond or at most just say “yes” if you think you are being asked a question. Where has my mum gone whose buttons I could push within minutes of coming home to either make her laugh out loud or shout at me if I said something you didn’t like?

Dementia is crap. When I was a kid there was a lady who used to walk around the streets in her nightie and collect milk bottles from people’s steps. Do you remember? This was the time when you left your dirty milk bottles out for the milkman to collect back, rinsed out of course. The lady in the nightie, you told me, was a health visitor when she was younger and knew me and Dan as babies. And you always said “if I get like that put me down.” I understand that, the health visitor lady always looked happy enough in her own world although was obviously incredibly vulnerable.

You never even look particularly happy in whatever little world you are now in. I’m not even sure you’re in one. If I could do something to make the dementia go away or make things right I would, but it isn’t as easy as that. Some days you have ‘good’ days, dad can make you laugh about certain things you’ve seen on TV and you do laugh in the right places at some of the shows on GOLD and it makes me think there is still someone in there.

Dad has been brilliant, although I doubt that would surprise you. He does everything for you from getting you up in the morning, taking you to the loo, brushing your teeth, dressing you, feeding you, giving you your tablets, taking you out, bathing you, drying your hair (which he is crap at)… there is nothing he doesn’t do. You go to daycare on weekdays which I know you would hate the idea of if you were well. You’ll be pleased to hear you cause trouble there and despite it being a dementia specialist centre you keep them on their toes. Annoyingly, they are closing the daycare down as local authorities don’t send enough people there due to the costs and you will soon be going to a daycare which isn’t a dementia specialist, which we are dreading. We’ll have to see how it goes.

You’d be proud that I continue your legacy of causing trouble and over the last few years have had to deal with benefits people, social workers, doctors, consultants, care workers and so on. Most of them have been helpful but the ones which haven’t have been told so. I even contacted the Daily Mail (your paper of choice sadly) to let them know about your daycare closing. I’ve been to a court hearing to dispute your benefits and sat in with social workers and doctors to discuss you and made sure you got the best they could offer. I think your consultant is a little bit scared of me but that isn’t necessarily a bad thing.

And, don’t get me started on the media’s portrayal of dementia. The good thing is that it’s in the news a lot these days and awareness is definitely at a high which can only be a good thing in finding a cure, or in the case of FTD finding a cause. One of the joys of your dementia is that it seems quite unexplained why you got it. But, one thing that really irritates me is the media love showing images of little old men and women doing some knitting or having a cup of tea when they are talking about dementia. Or, if they do show someone under 65 they are generally well and still getting on with things and are clearly in the very early stages of the disease. I’d love a news outlet to have the guts to show someone with dementia properly through the later stages – pacing around shouting and swearing and using bad language that they never had before or the other extreme sitting staring into the distance not aware of what is going on, struggling to understand what someone is saying to them, not being able to brush their own teeth, their grandchildren having more understanding of how to do things, not knowing their own family… the list is endless.

Hopefully you would be proud of my blog. I always remember you having your nose in a holiday brochure and even if you hadn’t been somewhere you would advise people on the best hotels as you’d read so much about them. You should have been a travel agent. I’m sorry you never got to see as much of the world as you wanted to and it seems particularly unfair that when you should be enjoying your retirement and spending some time on yourself you can’t go anywhere.

You now have three grandchildren, all boys, two of which are mine. They haven’t been able to get to know you which is heartbreaking. The eldest seems to understand what dementia is. He tells me his Grandma Barbara isn’t very well and her brain doesn’t work properly anymore so Grandad Tony has to help you with everything. He understands why you can’t play with him. My youngest is only eight months old so he stares at you quizzically wondering why you don’t coo over him like other adults and try to get his attention. Children just accept things though, don’t they? I really hate that I can’t talk to you about them both. Obviously I wouldn’t have listened to a word of advice from you but it would have been nice to moan to friends about your unwanted words of wisdom.

I’m not sure how many more Mother’s Days you’ll experience. When you were finally diagnosed with dementia I was told that you were probably only going to live for about another three years as the younger your body is the quicker the dementia progresses. But from my many hours of online research and conferences attended on FTD it appears that people can live with this disease for years and years. I’m not sure that is a good thing to be honest mum but we’ll see. As long as you are as comfortable as can be that is all we can ask and dad, loyal as ever, won’t even consider you going into a residential home.

All that is left to say is I miss you and I love you. I just hope that deep down somewhere you know that.

Denise Wallin is a family travel writer at her blog: aroundtheworldwithahighchair.com.

As well as writing and looking after her two sons she is a freelance marketing consultant specialising in leisure & entertainent brands. Raising awareness of dementia is one way Denise feels she is doing something positive for her parents and she has recently become a Speaker/Media volunteer for Alzheimer’s Research UK.

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