Can’t you just picture them? That sad and colourless elderly couple sitting silently at the table by the restaurant window. They’ll look like they rarely go outside and that life is desperately dull. Most telling, or so we think, is they’re not talking to each other. She’ll eat slowly and self-consciously, he’ll be tucking in with determination as if it’s his last meal. Most of us would come up with the scenario – they’ve been together for simply yonks and have nothing to say to each other, if indeed they ever had. We could go beyond that to envisage how they might sound if they spoke, where they come from and what job he did. How many of us would imagine he has Alzheimer’s and she’s his carer, probably his wife?
That’s how it so often is once the person with AD has passed a certain stage. Eating is something to be tackled, not enjoyed and taken at a gentle pace. He or she won’t be able to chat, to pause between mouthfuls to talk. Meals are to be got out of the way, no longer leisurely social activities.
NO SUBJECT WAS TABOO
I really miss that. How long is it since we had a meaningful conversation, putting the world to rights, analysing some news item? Debating whether aliens are coming or whether tourism is a good or bad thing for the invaded city, beach or country. Leaf and I are both avid readers and, through our short time together, eighteen years come this June, we’ve always enjoyed sharing the interesting stuff we’re learning, reading to each other the passages that resonate, delight, or enthral us. That’s all in the past.
At breakfast I now read aloud the main Guardian news and Leaf listens. I have no idea how much he takes in, but he does sometimes comment, though not normally at length.
READING THE NEWS
Dementia patients gradually lose the ability to process all but the most simple information. If you ask a question, unless the answer is obvious they’re likely to say something like ‘I don’t know’ or ‘I’ll have to think about that.’ Meaning they probably won’t because the cat will appear and capture their attention. Leaf is obsessed with one of our cats and is constantly going outside at night to check where he is. He takes a torch which he then puts down somewhere and, the next evening, we have to spend goodness knows how long looking for it. Anyway …
As his hearing is becoming less acute, I have to raise my voice which I hate doing. Yet, if we’re out somewhere and someone is talking really loudly, he makes a face and asks them to turn down the volume, it’s painful for him. Likewise if we’re in a place where lots of people are talking at once, the noise becomes a cacophony. It does for me too. Parties in places with lousy acoustics are often deeply uncomfortable. Leaf won’t bother to talk at all. I struggle.
BIG GATHERINGS ARE TOO NOISY NOW
Often he doesn’t say much when we’re in company. If the people are fairly vociferous, he will clam up although occasionally he will interrupt to tell a story which has absolutely nothing to do with the subject being discussed. He now has a repertoire of anecdotes and past history stories of his family which he trots out with boring regularity. And they’re not short. I tell people to say if they’ve heard them before, but mostly they listen indulgently barely managing to disguise their boredom. It’s interesting to note that he really gets cross if someone interrupts him because he can then lose the thread of what he was trying to say. Understandable of course.
Quite inexplicably, he’s suddenly decided he likes to chat on the phone to certain favoured family or friends. I can’t imagine why, he used to hate the phone. If I’m in the offing, I hear him telling the person on the other end all sorts of weird stuff as if it were a true account of what’s going on in our lives. I can only hope they don’t take it as gospel.
NOT A SELF-PORTRAIT!
During the day, talking is minimal and confined to the necessary. I have to watch out not to say or ask more than one thing at a time and even then, I will likely have to repeat myself at least once, if not several times. And each time I try to make it sound like the first time. Phew!
In the evening, he’s tired and if I try to engage him in even the simplest conversation, he looks at me with a bemused grin and glazed eyes. He appears to be in a state of ‘flatness of affect’.
And so we enter that strange, silent world of the couple at the window. There but not there. Together but sadly apart. I, at least, can talk to my computer. I’m so lucky to have my trusty Mac for company. Leaf virtually never goes online these days, he’s forgotten how.
So what can we do to make this less painful? There are some ways.
- if we want to talk about something important, we need to get the patient close to us and look them pointedly and maintain eye contact
- remove any likely distractions
- ask or say one thing at a time
- don’t ask for either/or answers or ‘what would you like?’ questions – suggest or give one option
- give them time to respond – we may have a bit of a wait
- speak clearly and slowly
- be patient
- be reassuring but not patronising
- don’t correct them and don’t criticise
- tactfully repeat what they’ve said for clarification
- don’t argue
- point or gesture if appropriate
- if in doubt, write it down, especially if it’s something important
These recommendations are mostly for early to mid stage dementia sufferers. When the patient reaches the later stages, different techniques will be required.
AFFECTION – ALL IMPORTANT
Above all, it’s important to remember to offer encouragement and lots of affection along with humour.
I have to add that there are days when my old Leaf pops out of the fog and is almost normal. It’s then that I wonder if I’m dreaming the bad stuff. Today was one of those days.
doodahtwo.home.blog 
So so heart wrenching Sue.
Dear Gin, Thank you for understanding. When things are going okay and he’s had a good day, I think it’s not so bad after all. But on the days when he’s hardly talking, I feel very isolated. He’s the one person I should be able to turn to when this awful disease is getting too much for me, but he can’t help, poor guy. I know he wants so much not to be a burden and I tell him he isn’t. We’re in this together, `I say, which is true, and he’s not to think like that. We both have to learn to deal with each little crisis in our own way. Ironically, despite all, there are times when we’re truly happy.
I do hope the old Leaf pops out for you more often but sadly I think not. You two don’t deserve this, I feel so very sad for you both.
Huge amount of love to you Sue one of the strongest ladies I know and of course to Leaf, who is greatly missed by many. And, where would we be without our pets? 🐕🐈🐕🐈🐕🐈xxxx
Thank you Caroline. He doesn’t just pop out with me but also when he’s feeling happy and secure with people then he forgets about his condition. Those are the best times: often they’re when we’re walking Monty with friends and their dogs – we both get an enormous amount of pleasure watching them dashing around having a great time. Animals are so good for us.
How very moving Sue. You are so kind and compassionate. Leaf really is so fortunate to have such a loving and caring wife. I can imagine that there are days when it must be such a strain on you both, but what joy when the Leaf, of old pops up.
Thank you Adrienne. It brings tears to my eyes as I read what I’ve written but it is cathartic too. And receiving supportive comments helps enormously. As time goes by, we are starting to connect to others in a similar position and it’s always strengthening not to feel alone with a problem, for me as the writer and for them as readers. To know that there are others making their way gingerly along the rocky path to the end of the line.
I have to say the good weather has helped both of us. Sunshine is such a tonic, no wonder the Aztecs, or was it the Incas (?), worshipped the sun.
I will start to cherish more our long chats about nothing, even the banter. Also after a long discussion on topical subjects, it does feel good to have used the thinking side of your brain. I do sympathise with your feeling of isolation , you really express it well. It highlights the issues of those who are truly on their own, and again the importance of our pets. I am also aware that none of us know what is just around the corner.
Hello Jenny, yes do enjoy nattering or swapping sillies. As Joni sang ‘We don’t know what we’ve got ’til it’s gone.’ I agree about those who are struggling on their own. That must be so tough. Animals. I go squidgy with love for them. They are blessed.
Sue, so glad that you two do have good days. But you so clearly let us look through a window to something we all hope to never experience neither as sufferer nor carer. Saddening. I do wish you the strength and positiveness of mind to continue on this path.
Thanks Steve. I try to strike a balance with Doodah so that it doesn’t become too depressing because, even at the worst times, there is good stuff and, of course, always more to learn. As for keeping up my strength, well, I have to so I will. I can always go behind the garage and cry my eyes out. Now as I sit in the snug in the sun, having had a good breakfast and read a bit of the noos, I feel good (not that the noos is, of course!). It’s important to take joy from the simplest of things. There’s always something to look forward to that can make the darkest of clouds move aside for a moment.
Oh Sue
Another truely sad blog but with your positive and helpful suggestions and optimistic ending .
You will laugh at me as when I first read it (with my cuppa in bed ) I thought you had written « when Leaf pops up like a frog « !!
So I had a fleeting image in my head of Leaf and our green frogs !!
Anyway … I am very happy for you both that he is still like his old self sometimes and very pleased these dog walks often help him to relax and enjoy life
What would we do without our 4 legged friends ? Especially Monty and Foxy !!
Thinking of you
Made me laugh too, Gail! As I said at the end of the post – yesterday ( today) was one of those days. Leaf really enjoyed our excursion with Foxy and Anne’s three balls of energy. Monty, of course, was in heaven. Seeing such joy is catching. Thank you for being part of it. xx
Very glad we can be a part of it ! I really enjoyed Leaf reciting verses from the Bluebeard poem to me while we wandered through the woods!
Thank you, Gail. The Bluebeard poem is fun and he loves reciting it!
Thanks again Sue for your reflections and insights….all power to you both in whatever form it comes xxx
Thank you, Dave. It’s always good to receive appreciation. As for power, you’ve no doubt read words I often use (not original of course) ‘Information is Power’ – to make informed choices. Not only about what to do but also about the attitudes we adopt. Writing Doodah helps me a great deal. Love back. xxx
I know how you feel this is so true the silence feels like it goes on and on like a fog enveloping you
Hi Susi, Yes, I know you’re going through this too. Talking can be such an effort for them I guess and they can get so tired trying to respond coherently to something we’re saying. It’s obviously easier to put it off. But, as I say to everyone, LOVE is the thing.
I wish we could do something to help you but know that with AD it throws up so many different problems and dealing with them is different with each person. Daddy was quite calm but Mummy used to fly at you if you queried anything, whereas Dick’s Mum just smiled. We had all three of them going through it together, hard at the time, but as with Leaf they had good days, not often, and when we had them back it was lovely. With Daddy is was sometimes just an odd hour and he always wants to tell you story which you had heard so many times just like Leaf.
Take care Sue you are doing a very hard job extremely well, give Leaf a big hug and one for you too.
Hello Judy, Heavens, having three loved ones suffering at the same time must’ve been so difficult. I’m lucky in comparison. And yes, although there are so many similarities, each person is different. I am praying the Leaf continues to be the gentle, loving guy that I now know so well. But I guess, that will probably be a lot down to me to react appropriately. Doing my best! Big hugs back.