Dealing with dementia

I feel like its about time that I wrote about the dementia that Ellis’ Nan suffers from & how it affects all of our lives.

I should start by explaining that there are many different types of dementia. If I’m honest, I don’t know much about all the varieties but I guess the most common one you’ll come across is the memory loss kind associated with the elderly. The kind that Ellis’ Nan has is called Frontal Lobe Dementia. It’s very different from how most people think of dementia as in most cases it doesn’t actually affect memory, but instead affects language & behaviour. One of the other differences is that it affects younger people. Ellis’ Nan was in her 50s when diagnosed which we were obviously completely shocked by as all of us had associated dementia with older people.

Throwing sticks together

It started with her not being able to think of the right word occasionally, which most people find happens to them every so often. Except for her it began to be more common & she began to muddle up words. Again, it’s not uncommon for people to do this, but gradually it became more common to get the wrong word or muddle the word up. Thankfully a diagnosis came pretty quickly, but sadly with that diagnosis came the news that there is no cure, medication or treatment whatsoever for her. That’s something that I think we’ve all found hard to deal with especially her. Unfortunately (or fortunately for other people) Frontal Lobe Dementia is actually pretty rare. I remember at the time of her being diagnosed reading that there were less than 12,000 people worldwide diagnosed with it which I found astounding. It’s now thought to be more common than that with many people having been misdiagnosed previously, but it’s still not common & there’s still no sign of treatment for the condition. The progression of the dementia widely varies depending on the individual & is very difficult to predict. On average the survival time is around 8 years from when the symptoms first begin but in reality I don’t think anyone really knows or can predict it. The progression has thankfully been fairly gradual for us but in the last year, it has really started to take hold.

Trying to explain how this kind of dementia affects all of our lives is something I find really difficult. Mainly I think, because I come out of it sounding like a total bitch! It is absolutely & utterly draining. The best way I can describe Jill’s behaviour now (for some reason I’m really struggling to use Ellis’ Nan, my mother-in-law’s, name writing this. I don’t know why but somehow I feel like I’m betraying her by using her name) is similar to that of a toddler. It’s actually really painful to say, but Ellis’ communication at age 4, is now far superior to Jill’s & his behaviour is more rational. In fact, honestly Ellis is the best at dealing with her & making her happy. Somehow he can usually find a way to communicate with her when everyone else struggles. It’s now become impossible to have any real conversation with her as sadly she just cannot follow what anyone is talking about. It must be so isolating, scary & completely miserable for her but I genuinely find the more I try, the more annoyed she gets with me now. I guess it’s that she’s aware that she doesn’t understand & is either upset that I’m not explaining properly or completely frustrated by it all, or probably both. Most conversations I have with her now are the same ones that we’ve had previously for years so I already know what’s coming & can anticipate how I’m supposed to react. Either that or I just go along with what she’s saying as I honestly can’t understand her & have found she’s happy at least thinking that I understand. However, they’re are consequences to this sometimes when you suddenly realise you’ve agreed to something but have no clue what it is. I’m also painfully aware that it’s only going to get harder for Ellis to communicate with her & in fact today he was reduced to tears of frustration trying to explain to her that he wanted them to play football together. Thankfully between the two of us, we managed to get her to understand & it wasn’t long until they were both shrieking with laughter.

Does it sound awful to say that sometimes Jill’s dementia can actually make me cry with laughter? I guess it’s the stress of the situation & knowing that I shouldn’t laugh but sometimes I just can’t help it. Aware I sound awful right now but a couple of weeks ago was the perfect example. We (me, Ellis & Pauly) were with her as we are most weekends & Ellis & Paul were pretending to fill up cars at the petrol station. Every time Pauly filled up a car he made a “shhhhhh” noise. I was talking with Jill & I realised that every time Pauly filled up a pretend car & made the “shhhh” noise, Jill got quieter! It got to the point where she was mouthing words at me & I was struggling to contain myself! I know, I know, I’m a terrible human being but sometimes all you can do is try to see the funny side of the most tragic situations.

Along with the gradual loss of language skills, the most recent development has been an almost total change of behaviour. Jill (it’s far easier using her name when talking about how she used to be) has always been one of the kindest, most selfless people I’ve ever met. She always welcomed me into the family & treated me like a daughter. She was a childminder & adores children. I think this is one of the reasons that she’s happiest around Ellis. Dementia has now taken so much of her true personality away from her. The easiest way to describe her behaviour is quite often like a toddler – that actually really hurts me to write that but there are so many similarities nowadays. I feel like I’m walking on eggshells some days talking to her as she can get really angry & you’ve got no idea why. I presume it goes back to how frustrating life must be when you struggle to communicate but again that takes me back to why toddlers have so many tantrums & mood swings. I find that she has to be the centre of Ellis’ attention & gets upset if he’s having fun with someone else. A lot of the time, I now try to set up activities for them to do, generally physical, that Ellis can explain to her & then I step out of the room & just keep an eye on them. It’s a bit like when kids play together, you have to let them work their problems out themselves. Most of the time they will & you only have to step in when you need to. It makes me so sad & actually tearful that this is now how I have to treat my mother-in-law. It’s just not fair. I’ve always looked up to & loved Jill for being such a wonderful woman & now I find I have to be the responsible one looking out for her & it breaks my heart. It kills me that Ellis won’t know the person she was but just who she’s become. I know it doesn’t really matter to him as he loves her anyway & at least he will remember her. It also seems unfair that I have to ask so much of him. It’s Ellis who I use to try & keep her happy when we’re together & I sometimes wonder if that’s fair on him, but I just have to hope he’ll understand when he’s older & that it will help him grow as a person. He really is such a caring little boy & manages to get along with everyone he meets, so maybe he’s learnt these skills or developed them because of his relationship with his Nan? Maybe I’m overthinking it, I don’t know.

If you’ve managed to read this far, you might be wondering why I’m even writing this. Well partly as therapy for me, partly to document it all, but also mostly because people can sometimes be very judgemental when we’re out & about. Now most people can work out fairly quickly that something isn’t normal & although they probably don’t know what they will tend to try their best to help. Especially servers in cafes I’ve found to be mostly wonderful people. I’m not kidding you when I say that sometimes it can take 10 full & painful minutes to establish if or what Jill wants to eat or drink when we’re out. We spent 15 minutes queuing the other day at our local forest, to get to the front of the queue & I still had no idea what she wanted to eat & drink so had to guess. As soon as we sat down, I discovered I had guessed wrong & was in the dog house for it! Where I find it hardest is when we’re around other children. As I mentioned above, Jill loves kids & used to be an exceptional childminder. However, what this means now with the affects of her dementia is that she will walk up to random children, especially black children (no I don’t know why) & hug them & stroke their hair. Now obviously most parents reaction is complete horror at a stranger walking up to their kids & cuddling & stroking them. Jill then gets very upset if you try to take her away from them & if the children are black, she’ll actually think you’re being racist! It’s all very awkward but thankfully most people are ok with it when you apologise as they tend to realise there’s something more going on. One of my favourite moments with her was when she walked up to a Muslim couple sitting near us in a cafe whilst I was getting Ellis’ coat on & told them “I know most people don’t like you, but I do!” It’s quite funny now when I think about it but at the time all I could do was drag her away mouthing “sorry” over & over. To be fair, I was impressed that she managed to say it so eloquently but could have really done with her not making sense right then! Ultimately, life would be made a lot easier in public if there was some kind of badge that Jill could wear that everyone understood means that she has dementia but looks pretty & that she’d like to wear. Until that exists, I guess I’m just asking that when you go about your lives, you maybe take a minute to think that if someone is acting strangely, it might be that they have dementia or something similar & please just give them your patience & understanding. And also if you live in Essex & some lady runs up & cuddles your kids, it’s probably my mother-in-law & you’ll more than likely see me & Ellis running after her, trying to retrieve her! One thing dementia hasn’t affected is how bloody quick she is!

Proving how quick she still is!