Accepting the way dementia transforms someone you love.

It’s been a rough two weeks on the old dears front and now things have settled again, I feel I can talk about it. There is a maze of guilt and awfulness to experience when someone you love gets dementia. It is really hard to watch the pieces of their personality gradually disappearing. I know that Sir Terry saw it as little pieces of himself disappearing forever every day. The trouble is, if you are close to a dementia sufferer then for the sake of the sanity of both of you, you cannot allow yourself to see it like that.

Mum and Dad’s wedding photo. Check out the hands. Hanging onto one another like they never want to let go.

There was a time when I felt that Dad was dead to me. That the person I knew had gone. That made me feel like shit on oh so many levels. Actually, it isn’t true. The person I knew is still there, but parts of his brain have gone. I reasoned it out like this:

If he’d had an accident and become paralysed from the waist down, I wouldn’t write him off because his legs didn’t work. So his brain is stuffed, it’s just a different part of the body, so what was the problem?

Even so, there was a period when I felt that I could never learn to cope with this new stranger in a familiar guise. My dad who wasn’t my dad. There were times when I almost wished he would die, not because I wanted him to but to end his suffering, and ours. I still envy people whose parents die suddenly or after a short illness, but that’s because treating Dad with the dignity and humanity I should takes an exhausting amount of moral fibre, mental stamina and strength of character not to mention time, a commodity of which I have absolutely fuck all! And emotional energy, another commodity of which I have jack shit. I guess there is always going to be the odd day when I wonder what it would be like if I could stop being quite so badly needed and get my life back.

Then I remember what my Dad’s friend Ken said. Ken looked after his wife, Biddie, when she had dementia. He was just lovely with her and she’d wander off, get confused, be unable to work out where she was. Ask where the children were and he’d say, ‘They’re at home, now come along Biddie, it’s quite alright.’ I once told him I thought he was doing a wonderful job and that I thought he was amazing, the way he looked after her, the way he coped with it and that I was in awe of how he did it because I didn’t think I could.

‘It’s an honour. An honour and a privilege,’ he said.

He got emphysema and his son and daughter came to live in, turn and turn about. At one point, before his wife died, he was very sick and was given the last rites. The next morning he felt better and rang the priest to say thank you! Like Mum is doing for Dad, he held on. He survived Biddie, but not for long.

So that’s my motto for when things get difficult. Be like Ken. And it was Ken’s attitude to Biddie that I aim for, that ability to see her as she had always been when, to the rest of us, she seemed have become someone else.

Mental disabilities are hard. People who have cognitive problems, or who say and do inappropriate things can be hard to love. The parameters in which they operate are not the same as ours, so it’s awkward. Connecting is hard. Sometimes, it’s even dangerous. I confess, it’s not great when you consider it a success if you get away with hugging your father without him groping your arse. But the important thing with dementia is not to give up on the person. They’re still in there, they’ve just lost their ability to process the world through memory and all that is left is emotion, so the trick is to keep them feeling emotionally comfortable – yeh, I know, easier said than done.

Dad is not always very nice to people anymore (understatement of the century) when he panics he gets defensive and sweary. He’s particularly bad in the mornings. He’s never been a morning person and actually, I thoroughly sympathise there, because neither have I. When I wake up in the morning, the first thing I do is get up, wash my face and clean my teeth because, even with an electric toothbrush, cleaning my teeth is one of the most boring things in the world and I like to get it over and done with. And this is the thing with Dad. To look after him, we all have to make the links between the extremes in his behaviour to the norms in our own; to understand, to give it a lot of thought.

Despite being a very social animal, Dad also struggles with a busy house first thing, so he’s not great at having visitors to stay. Indeed, the vilest and most horrible I’ve ever seen him was last Chirstmas, when McOther, McMini and I went to stay with Mum and Dad. There’s a hotel just up the road and I think staying in that might be worth a try in future. But at Christmas most hotels have been booked years in advance, or are closed. At Christmas, it will always have to be round theirs.

Some days, Dad is completely switched on. He knows who I am, he remembers how to have a conversation, more to the point, he can follow one. He pauses and listens when others are speaking and chips in with his own comments. Other days, he shouts that no-one’s paying him any attention. That just means that, today, he can’t follow the thread and is feeling a bit frightened and disorientated, or just a bit left out. His reactions are more childlike as new parts of his brain succumb. It can be hard to find Dad in there, beyond all that effing and blinding, throwing things around. Strangely, while in some respects, there is an element of a two year old throwing a tantrum, with much of it, the main gist is seeking reassurance or trying to hurry things up. So he empties out his cup or clears his plate, but he doesn’t realise that scraping the leavings off it onto the drawing room floor is the wrong way to do that. It gets a reaction and gets everyone’s plates cleared so that’s fine by him, he fails to grasp the gap in his logic.

When Dad is like this, it’s really hard to engage. You don’t want to. You withdraw. You cut off contact. You don’t talk to him because it hurts you. Except that makes it worse. I guess the biggest trick is to remember that while he’s behaving badly to get attention, the reason he is vying for that attention is because he needs reassurance. You have to constantly remind yourself of the dementia sufferer’s humanity, even when they seem to be inhuman. If I chat to Dad and give him lots of attention when I arrive, he is happier and I also end up having far more time to talk to Mum.

A couple of years ago, Mum finally got too exhausted to look after Dad and her health broke down. Waking up and talking him to the loo whenever he needed a wee in the night, every night, for fifteen years had finally taken it’s toll. Lack of sleep and the rigours of living with someone who, essentially, needed the kind of vigilance required to look after a two year old is hard enough when you’re young. When you’re 82 it’s a pretty tall order. I remember talking to my brother, and we felt that Dad was dead and all that was left was this weird shouty stranger who was dragging Mum down, sucking out her life, her energy, the joy in her life. My brother wanted to put Dad in a home but Mum said she’d promised she’d never do that and refused. I stood by her because I wanted her to be OK with herself.

Luckily, I don’t feel that way about Dad anymore, but I’d lay bets that feeling is a natural stage in coming to terms with any brain-damaged loved one. So to anyone reading this who feels that way, chill. It’s normal. Likewise, feeling shit about yourself for feeling that way is, undoubtedly, normal as well. And if you work at the way you are thinking about this, analyse why you feel that way and do your best to work out ways to engage with dementia sufferer on their own terms, it will pass.

Dad can’t understand why Mum no longer looks like this.

While putting Dad in a home would, undeniably, be better for Mum’s physical health, it would be disastrous for her mental health and, at the moment, it would be terrible for Dad, too. Maybe further on, when he doesn’t really realise it’s a home he’s in but not now when he is very aware and wants to stay where he is, with Mum. For all that he is ‘engaged’ to one of the carers and two of the young women who work in the pub, there is still a weird habit of love for Mum. He doesn’t realise he’s old, so he can’t quite understand how they are married, but he does understand that he loves her, even if he has difficulty placing how or why. My brother is probably right. Looking after Dad may well be killing Mum, but it’s what she wants to do and it’s her choice. If she stops living life on her terms, or doing whatever she needs to do to be able to look herself in eye in front of the mirror in the morning, that really will kill her.

However, recently, Dad has been doing some very silly things, like throwing himself on the floor and refusing to get up. I worry that he may hurt himself and then Mum’s whole argument – My friend X put her husband in a home and he didn’t last three weeks – goes by the board. Because if he ends up in hospital and then has to just go somewhere where they have a bed, it would be disastrous. So we need to establish a relationship with a home. One where I think he would be happy if he lobbed himself onto the floor and broke his hip, or if something happened to one of the live in carers and he had to go there for respite. So this last couple of weeks, I picked out a home, a really, really lovely place nearby, took Mum and Dad to visit it and put his name down. It will be a while before his name comes up but at least he’s been there now. I was hoping to look at social days there but he realised it was a rest home, so I think we will have to wait and try that again in a month or two. The idea is, that he gets to know a home then, should he need to go into one, it will be a place with which he is familiar.

Going to see Dad and Mum every week does help me to see the dappled light and shade of Dad’s moods. Sometimes he is on amazingly good form and is unmistakeably my father as I knew him, others, not so much. The thing is, as the disease takes more and more of his brain, you have to work harder to engage. I guess I have come to see him as some kind of Dad-shaped enigma, a puzzle that has to be solved. Sometimes he says,

‘I don’t like you Mary.’

When he does this, I rush over to him, fling my arms round him and say,

‘Nooo! You can’t say that Dad! Because I love you!’

He will then hug me back with all his might, laughing with relief, well, we both laugh with relief at that point. It used to hurt me a lot when he did this to start with, until I learned the hug trick. But now I understand that when he says he doesn’t like me, what he’s really saying is that he’s worried that I don’t like him. He has enough emotional intelligence left to know that while bad behaviour gets him the attention, and therefore the reassurance, he craves, it also upsets people. He’s asking for a different kind of reassurance, but in a defensive, spiky way, and when I give it to him, he relaxes and his bad temper fades. But it’s hard and it takes mental energy. And I watch the carers, because they learn these techniques more quickly than I do, so I can see what they’re going that works best and copy. That side of it must be much harder for my brother because all the carers are women, so he has to work out his own path. I don’t envy him.

Sometimes, when you’re caught up in the admin, the things you need to get and do, it’s easy to forget that Mum and Dad are people; to forget the human element of the logistical problem. It’s not always easy to give them the freedom to make decisions for themselves and I often feel caught in the middle, because I think, being further away, my brother takes it harder than me and is more keen to just sort it out, by putting Dad, or both of them, in a home. The gaps between his visits are longer, therefore, the deterioration in Dad is more obvious, Dad’s behaviour is always at its worst, and techniques that my brother has learned, which are successful one visit, may no longer work on the next. Because I’m lucky enough to live nearer, and visit every week, most of the coping strategies will last longer before new ones need to be found.

Despite spitting on the floor, throwing stuff about, making inappropriate comments and loving the F word above all else, there are times when we do get Dad back, even on the bad days. Just pop on a dvd of Dad’s Army and suddenly we are all laughing together, on the same level. Or sometimes, listening to music, looking at something outside, taking him for a walk, talking about my grandparents, he will suddenly light up and tell a funny story and we will all be laughing as if he was fine.

But that’s the thing I need to get my head round, of course. He is fine. I’m the one with the problem. He’s just disabled.

15 Comments

Filed under General Wittering

15 responses to “Accepting the way dementia transforms someone you love.

  1. there are no words Mary 😦
    Thank you for what you’re doing and your honesty in writing about it

    • Thanks. I just want people to understand that if they feel these things, they aren’t alone. It’s interesting how much my outlook has changed over the last few years. Something that I really felt when I looked at that meme you posted the other day about offending people. The first time I saw it my reaction was completely different to the second time! Just goes to show that our experiences make us who we are.

      Cheers

      MTM

  2. You’re doing the best you can, and it’s good for you to document it for yourself, to remember the good parts (and minimize the others). I love your story about giving your dad a hug and breaking through when he doesn’t know how to do it himself. There are so many techniques, and it is a gift to have carers who know them. I know I couldn’t do their job, not day in and day out.

    But then we all did manage to take care of our children, didn’t we? They’re more rewarding, in some senses, long term (and they grow closer to taking care of themselves, I had to tell myself at times, to get through it), but parents already earned our love. If earned is the right word for what we owe them.

    The very worst thing about the retirement community we’ve moved to is that all but one or two people are older than we are. ALL. Let that sink in a moment.

    In New Jersey we lived in the suburbs, and, while we didn’t (and especially I didn’t, since I got out very rarely) have a lot to do with the neighbors, some were older, others younger, and there were kids around a lot of the time.

    I’m having the pleasure (NOT) of watching the deterioration, physical and mental, of many of our new compatriots. Being disabled already, I’ve missed so much of life. And now I’m seeing a lot of people live through obvious beginnings of dementia, as well as finding out people who moved here in good shape have then lost a spouse or gotten very much less mobile.

    The very apartment we are having renovated for us now is available because a woman has moved to assisted living; I am buying a lovely desk from a woman who is also moving to AL, and whose husband is in skilled nursing, ‘sleeping most of the time.’

    I see our job here as helping elicit the stories of those fading – even if not quite factually true at times, some stories seem to bring the person telling them back to a scintillating self. And of course we haven’t heard them yet, so it’s not much of a burden to ask.

    I hope someone will do the same for us when we need it. I’m glad we moved while we could still do it for ourselves – and the kids. We’ll see how it plays out.

    • I hope it works out for you too. And thank you. I agree with the you on carers too, mum and dad’s are amazing. I have learned a lot from their total acceptance of Dad the way he is. As for the rapidly moving fills around you, I hadn’t really thought about it but I guess there is a bit of a turnover in a retirement community. But maybe it’s just moving fast right now. I hope so. I’m sure you have done the right thing moving there and certain sure that your kids will be very grateful should the time come when you aren’t able to live independently there. I hope you get some younger folks moving in soon or more of the disgracefully of types to pep things up!

      Cheers

      MTM

      • There is a problem in that many people don’t think of moving to a retirement community until they CAN’T live at home any more, when they should be thinking, “How SOON can I move to a retirement community – to enjoy what one resident calls the cruise-ship-like ambiance and services.” People here can just lock their door (or not!) and go off on travel whenever they want, without having to worry.

        It took us well over three years from first thought (mine) to moving – there is a lot to consider in wrapping up one life and beginning another. Key: husband was getting very tired of pruning bushes in the hot muggy New Jersey summers. YMMV

      • I an believe that, which is why I’m glad we’ve done this, even though Dad isn’t ready yet, and hopefully never will be, we are waiting in line, just in case.

        Cheers

        MTM.

      • They’re not as bad as the old scary old peoples’s asylums. This one isn’t, anyway. I don’t know about the UK’s.

      • None of the ones I’ve seen here have been bad, my Grandmother on Mum’s side and Grandfather on Dad’s were both in homes and in each case they were lovely.

        Cheers

        MTM

  3. BH, MT, when are you going to get this into a book. The thing about hugging him when he says he doesn’t like you is the most insightful thing I could ever imagine. EVERYONE needs to know that strategy. I wish I’d worked it out.

    And Alzheimer’s Society need to read this blog regularly too.

    You’re doing a great job. A caring, humane, human job, that you should bear no guilt for, ever.

    And getting to know the people at that ‘stand-by’ home is good too. The Sister at the one we had to move my mum into was so helpful, sorting my head out.

    Sending hugs xxx

    • I can imagine re the home. My granny had a stroke and went into a home to recuperate. It was lovely. She had a nice room and the staff were brilliant. Mum and my uncle have her the option to move back into her own home but she decided she’d rather stay. The sister there was sweet. In the last year of her life my grandmother just lay in bed. Mum said she used to go and sit with her once a week and just cry. She said the sister was wonderful and would always make a point of seeking mum out when she visited to make sure she was ok. She used to tell mum that my grandmother was always different, more serene, more peaceful after mum had been to see her. My mum said it got her through.

      I do visit the Alzheimer’s society forum quite a lot so when I’ve posted enough to be allowed links I may post one to the dementia page on here.

      Thanks for the endorsement and the encouragement! 😊

      Cheers

      MTM

  4. Diana

    I continue to learn many things from you (and from those who comment on your posts). I wish you didn’t have to deal with all the complications of your parents’ life challenges — but the fact that you do, and you share so much, is a gift to us.
    Thank you.

    • Mwahahahaaaaargh! The idea of anyone learning anything from me does make me chuckle. But thank you. Glad all my witterings are useful. It’s lovely to think this stuff has the potential to help someone.

      Cheers

      MTM

  5. My heart breaks for you x

    • Bless you. It’s alright, I promise, it’s just hard that’s all and I want to do right by dad because he is fighting it so hard. It started in 2004. That’s a hell of a long time.

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