For some time now, I’ve been toying with the idea of starting a blog, or a website, specifically dedicated to my experience of dementia; with my dad, mainly, but also, these days, with my mum since she, too, is getting very forgetful.
However, it seems far more sensible to do it all on here. The subject matter on here is so random anyway that I doubt many of you will take exception to the more detailed post about my dementia-related experiences every now and again. If you look at the menu, there’s now a dementia section and all the posts which mention Dad’s Alzheimer’s are tagged Dementia and should appear there. Obviously, in true M T McGuire form, it would be pointless talking about my situation if I didn’t occasionally share a list of things that have either worked to keep me sane or that I’ve fucked up royally so that you don’t have to. This isn’t exactly that list but below are some of my less than ordered thoughts on the subject.
Here are the golden highlights of coping with dementia, in yourself or in others.
Be not proud! And be absolutely up front with people.
Yes, you read that correctly. All will become clear.
The first sign that something was amiss with my dad was when my parents refused to come and stay. Our spare room was on the top floor and the loo was in the middle. Dad always needed a wee in the night and he began to wake up in a very disorientated state. Mum didn’t always wake up too and she was afraid he’d fall down our stairs. So for three years, from about 2004, they refused point blank to come and see us. Mum never told me what was wrong, she just made up excuses. She’s bollocks at making up excuses so I assumed I’d upset her but she said I hadn’t. I got very down. I didn’t know what to do.
Luckily, I have a brother so I rang him and asked him what the fuck my parents were up to. He didn’t know either but said he’d ask them. When he broached the topic with Mum she told him at once. So it was he who explained about the stairs, about Dad going weird in the night and Mum’s concerns. The last eighteen months we were in that house Mum and Dad started coming to see us again. We were in a small market town with a perfectly decent hotel and a lot of equally decent guest houses. We put them up in one, within walking distance of our house. The moral of this story then, be honest, because when trouble crops up, there’s usually a work around.
Mum could have saved herself and us heartache if she’d just admitted that Dad had a tendency to get dizzy when he got up in the middle of the night. She wouldn’t have even had to mention the dooh-lally part. Likewise, I could have saved myself a lot of heartache if I’d read the signs and worked out that something was wrong earlier or just asked my brother sooner. But hey ho, it all worked out in the end.
These things are like the flight path of a landing aeroplane. You sink, level out, sink, level out and so on to the bottom of the chasm. If you can manage to think ahead a bit, to what the next level of deterioration might be, you can save yourself a lot of grief. It’s hard to look at the next stage of the illness when you,are losing your mind or when a loved one is losing theirs. Naturally you don’t want to think about it, but trust me, for the sake of everyone concerned it helps. For a long time, Mum and Dad seemed to be in denial. Mum kept a very close eye on Dad and I watched her sinking. Imagine if you are eighty and you are looking after someone who is, essentially, a giant two year old. As a mum with a two year old of my own, I knew how hard I found it to keep my eye on him all the time. I can’t imagine how difficult it would be to cope when you are elderly.
Talk about it.
Mum and Dad are actually very good at this, they have talked to me, extensively, about being mortal, I know what kinds of funerals they want, what kinds of hymns, what kind of goodbye. I suspect they’ve willed money for a
piss up wake. They also talked to me about what might happen if they went nuts well in advance of any dementia appearing. In Mum’s case we have talked about how she felt when she was in a similar position to that which I’m in now, looking after my granny. My grandmother had lots of small strokes, micro bleeds at the back of her head and as Mum puts it, ‘she just faded away’. For her last year my granny was lying on a bed in a home. In those days there were no living wills or powers of attorney for healthcare. Even so, when my granny got pneumonia, they asked my Mum what kind of treatment she would want, Mum said to make her comfortable. They did, she got better without the life prolonging drugs and died peacefully a few months later.
In her last year, as well as being bed-bound, my granny couldn’t speak and made no signs of recognising Mum’s presence. Mum used to go and see her and sit there crying quietly for forty minutes. The staff in that home were wonderful, and were wonderful to Mum, too. They assured her that my granny was different, more peaceful, even calmer, after a visit. They took the time to see that Mum was OK too. Mum and I still talk about this, and I really wish I’d been able to have the same kinds of conversations with Dad about his dad, who also ended up in a home. It’s hard to talk about these things, but if you can open up to someone you trust it will help and it will also give your carers a feel for what your wishes will be, and how you will want to be treated, when you are no longer able to tell them.
If you are the carer, it’s worth making sure you have someone to talk to and if the main carer is not you it’s worth finding someone for them. There is a lovely lady who comes to see Mum who is the deacon at her church. I saw the lady talking to Mum one time when she was in hospital and couldn’t speak. I asked Mum, afterwards, if it would help to see this lady often. She said it would. She never rang the deacon herself, so I did and now she comes to visit Mum regularly. I know it helps.
People want to help you. Let them and if you can’t let them down kindly.
There are a lot of people around my mum and dad who love them almost as much as I do. They are sad to see people they love and respect struggling. Sometimes it’s hard to accept that the people who love you may be even more upset about your illness than you are. So if you or a loved one are in similar poop, and people offer to help you, let them. Mum and Dad have a big group of folks who give them lifts, pop in to visit, pick up shopping sometimes or generally help out. I think they had a hard time accepting help from these folks at the start but now they revel in it. They get continuity in that these are people they’ve known for some years, yet they also have variety in that it’s not the same old faces. Likewise for the helpers, there are enough of them to avoid fatigue setting in. Despite his dementia, my father is a very social animal, and this has helped him stay with us for far longer. Likewise, Mum and Dad have a four carer team but they also employ a cleaning lady for a couple of hours a week and a family who work in the garden. These folks all give support that goes well beyond their job descriptions. They do this because when Mum and Dad were fitter and younger they were good to these folks. I’m a great believer in karma now that I’ve seen it in action on my folks. So if people offer help, and it’s useful help, let them. Pride has no place in this.
But at the same time, set parameters for your helpers.
If anyone helping you, or your loved one, gets too clingy or too overbearing, tell them. When you are ill and losing your capacity to process everything but your emotions, you don’t have time to put up with anything that will make it worse. So if someone who wants to help is … well … not helping, you have to tell them. Or if you can’t, you have to find someone who can and ask them to do it for you.
My mum loves her garden. She sees it as a living thing, an entity which must be treated with kindness and sympathy. However, she is very arthritic and once Dad had started to get really forgetful, it was too much for her to do on her own. There was a point where the chap who was coming to do the garden kept cutting down the wrong things, pruning stuff wrong, planting vegetables in the wrong places, forgetting to water them etc and you could see that something inside Mum was curling up and dying along with her plants, but she couldn’t let him go. She couldn’t face the hassle of finding a new gardener while she was trying to look after Dad, or, indeed, the hard task of telling the current one she no longer needed his services. Her heart was so full from the pain of seeing her soul mate, my father, her husband, in such distress.
In the end, after a family holiday, my Mum became very ill with pleurisy. At this point, Dad had reached the point where he was so forgetful that he couldn’t cook or look after her the way he would have done. My brother and sister in-law went to stay and they gave the gardener notice and employed the people who do it now. My mum almost cried with relief and the ‘new’ gardeners are wonderful and love Mum and Dad dearly.
Moral, don’t wait for the crash. Take action first.
Avoid being too proud.
Mum is of the old school where she believes that if Dad is ill she should look after him herself and that nobody should know about his disability for as long as possible. But actually, when you’re in your eighties, you can’t look after someone who weighs about eighteen stones, can’t wash himself and has to be talked through the process of going to the bathroom every two hours hours, every night. You need help.
When Mum finally agreed to let someone come and sit with Dad for an hour, three afternoons a week, so she could get out into the garden, she blossomed. And the lady who came round did the ironing and all sorts of other stuff that Mum was struggling with fitting in around caring for Dad. So it helped in all sorts of other ways she hadn’t anticipated. It also meant there was no longer the danger of Dad coming out into the garden looking for Mum and falling down. The carer would bring him out, with his walker, and sit with him.
Even if your loved one seems gone, keep searching.
Dad is very different to how he was. He’s the same person, but he’s a different incarnation of that person, the raw genetic make up. He has lost his filters, his ability to moderate what he says and he has become very much more self centred. Just as a child learns to think about others, so as he regresses to a more simplified state of self, Dad has lost that skill. It’s not his fault. It’s just the way it is.
He can no longer read, his ability to read a novel was one of the first things to go but he is unable to read even short stuff now. It’s interesting that Mum writes herself notes, but even at the start, if she wrote a note for Dad and put it by the clock saying, ‘went out to garden at ten to three back in for tea at four’ he would not think to read it or look at the clock. This was so early on, when he was just my dad with no short term memory. These days he can be a little boorish, which is incredibly sad because Old Dad would be horrified if he could see himself like that. But a lot of the times, the boorishness is asking for help. ‘I can’t get a word in edgeways,’ means, ‘your sentences are too long for me to follow, can you slow down.’ The answer is to speak in short sentences, starting with a shared memory and then as the conversation gets going, you can bring it forward to the now. Lo and behold! Before you know it, back comes Dad. Reaching Dad is all about trying new things. When the landscape of his mind changes, you just experiment until you get him back again.
It’s OK to grieve for someone before they go.
Although I’d recommend keeping it to short bursts. But sometimes you need to cry. Or just drive up to the top of a hill and shout your anger into the wind – my parents live near the South Downs so that’s quite easy for me. But yes, while my dad is still himself in some ways, I still pine for the refined non-raw version. But I also hear him, I hear him in the way I talk to my son, in the anarchic conversations we share, I hear him as I tell my son to get into bed! And that if he could manage to clean his teeth sometime before I die of old age it would be wonderful. I hear my dad speaking through me as I comfort my son after a bad dream. I remember who Dad can be, over and above the raw genetic version I have now, and it’s extremely important to me that I do, that I keep sight of the man who is in there still, but who the present Dad can’t be. And I cry. But that’s OK. Sometimes you need to cry. Ration yourself, though. Indulge your grief too much and it’ll take you under but bottling it up is also unhelpful.
Sometimes your loved one’s disease will speak more loudly than they do.
My dad says some seriously inappropriate things but it’s just his illness talking. It’s hard to accept that sometimes, especially when the person says something that upsets you, but you have to let it go. If you can, it will allow the relationship between you on good days to be much more similar to the old one before the dementia came.
Make the most of the good days.
Need I say more? Enjoy them. Do stuff. Go out on a whim. My parents are the most social dementia sufferers I’ve ever met. They still go out, visit friends, have lunch with people … It says a lot for their friends, too, that they are so accepting.
Being a carer is hard. It can fill up your life, suck up your emotional energy, sap your physical energy, your strength of spirit and your creative mojo. Alzheimer’s is a long, slow death of a thousand tiny cuts. To put it in perspective, Terry Pratchett was diagnosed four years after Dad began to deteriorate. Dad’s still around. It’s been about fourteen years, the last nine or ten that we’ve really known something was wrong, but … fourteen for Mum, definitely. Not a barrel of laughs.
The truth is, no matter how much you may love the person in your life who is ill, you cannot give your all for that amount of time. You have to ration how much you give. You have to look after yourself, leave time for yourself, or you will go under and then you’ll be no use to anyone. And if you aren’t the main carer and they are neglecting their own sanity and health, you have to make them understand this as well. As it’s often said, this is a marathon, not a sprint. You can’t run twenty four miles at the same speed as Usain Bolt.
Do what’s right for them: it usually works out.
There was a point when I would worry that Mum and Dad were so far away. It was difficult to get them into a home because Mum was far too well to go into a home and she refused to send Dad into one alone. My brother and I discussed moving them nearer one of us but if we did that, which one of us would it be? We live on different sides of the country. So they stayed put in their own home and I worried that if something happened, and I couldn’t drop everything and be with them, I would have to let them fall. Indeed, eventually, I did.
Mum had a stroke and went into hospital in March 2016. At least by this time we had the afternoon carer and an agency helping Mum and Dad get up in the mornings. I had to ring the lovely lady who would look after my dad in the afternoons and ask her to sleep with my dad so I could drive down to Sussex and be with my Mum. I remember sitting with Mum in hospital at three am. They asked her where she was, she said she was at home, they said she was confused, I told them no, she was having trouble speaking and that what she meant was, she was with me. They finally got her onto a ward at five and at six they told me I should go because the car park was free until six am. I slept two hours that night. Mum came home at three in the afternoon. I had to try and look after both of them. It was horrific. I slept two nights with Dad while Mum slept in another room. Then my boy needed to go to school and my husband to work. I had to go home. I hired a care agency for the following week and my brother came down for the next three nights.
There was a week of special hell while we got a care team sorted. Mum refused to accept she needed live in care, but she kept falling asleep with things on the stove and burning saucepans, and she was getting very forgetful. My brother and I wanted to move them near one of us but they both refused. Now that we have their lovely care team in place I realise they are so much better off where they are, where they have friends and where they have lived for over 40 years. Once they had twenty four hour care, keeping them in their own home was a no-brainer. Thanks to their fantastic care team, they now enjoy a social life far and above anything I could deliver if they came to live here. They are in the right place for them even if there were points when my brother and I felt like it was the wrong place for us.
Make time for yourself.
When you have children, people say you must keep something that you do just for you; continue your career, a part-time job, a hobby, whatever; something that validates your humanity as something other than your little one’s mum. Something that is not about motherhood. Something that is about YOU. It is very hard to squeeze that in when you are trying to care for elderly parents and a small person at the same time.
That is why, even though I have to fight for the time to write and struggle to find ways of putting my head anywhere close to a place where it’s possible, I can’t give up on it. Because I have to hang onto something that makes me who I am; something that defines me as someone other than Mum and Dad’s daughter, or McMini’s Mum, but ME; Mary.
You cannot self actualise though the job you do, but likewise, you are more than the visits, the form filling, the planning, the admin. Give yourself you time. Allow yourself to be human. You are a person in your own right, you are important as well. Allow time to be you.
Well … that was a bit of a monster, wasn’t it? But in a short snappy sentence, I guess the nub of it is this: when a loved one is long-term ill then, if you want to look after them, you have to look after you.