Loss of memories is hard, loss of Hope is even harder…

We all need a reason to live……When you’re given a life limiting diagnosis the need is even greater …

 “People living with dementia need a reason to keep living. The love and support of their closest family members (like husbands, wives, partners, children) rather more important that a Govt pledge of testing! Plwd already have an incurable, terminal illness – and are dying from it in increasing nos.”

Said Johns campaign on Twitter recently…..

 It got me thinking how strange and different  life is becoming and I’m not sure I can cope with it this way. I know I’m luckier than many, ones without a job, without a home and far more. We each have our stresses through this crazy time and these are just my worries …..

I’m trying to keep writing about anything and everything because that’s the one thing I cling to from the old world….but I need more …..

I’ve always had trouble sleeping…2-4hrs being my norm – but before Covid I coped with it, I had a purpose to be tired, but now I’m struggling because that purpose no longer exists, so it’s exhausting just existing at the mo….

If Zoom is the new reality for conferences and events, then I’m done for. I’d built a new life  travelling around the country meeting all types of people, talking at events, educating, meeting playmates. selling my books, and now that life has disappeared. That was my life. That kept dementia at bay…

I know I’m on a real downer, but I dared to look to the future and I saw nothing…

….people with dementia need more than Zoom to keep them connected. I need more than zoom….you’d have thought that 3 or 4 days a week travelling all over would be more exhausting than 3 or 4 zooms a week, but for some reason that’s not the case. Yes, it was exhausting travelling, but it enabled me to use my brain continually, working things out through the day, keeping it stimulated with different environments, different conversations. It gave me the purpose I needed.  I’m convinced that’s why my decline has been slower than some.

But now…….you don’t have to think too hard to click on a link. No pink file needed to be sorted….another ‘last’ passed by unrecognised as I don’t remember the last time I was on a train, the last event, the last people I met….I could look it up on my blog, but they’d just be words, no emotional connection I don’t think…just sadness at another ‘last time’ lost. Each day the same as the previous one, no true variety as before. It’s becoming even harder to motivate, to become engaged….I’m in a hole and the sides are steep…

Last week in Keswick, helped me no end. Different scenery, different conversations, different trundles, all helping me work my brain harder. But Sarah took me there. No planning by me. I’m too worried by the trains at the mo. I did think about going on the train but I opened the site to book the tickets and sort out the times, something I’ve done since being diagnosed, and it was gone….alien…might have well have been in a foreign language.

I will have to find a way to learn it all again, hopefully, as that’s the only way I won’t have to rely on my daughters. AND I do like train journeys, I do like planning them…it all helps my brain stay alive. I just seem to have lost that skill at the mo….

So the future looks bleak, a normality far in the distance and we, like many others with a life limiting condition, don’t have that luxury of time. The new normal won’t resemble the old…

Hope is the one thing I’ve always had.

The travelling around is the one thing that has given me hope; meeting playmates in person gives me hope.  Hope that tomorrow will be better after a foggy day, hope that today will be a good day, but without hope it’s hard to fight dementia…

As the title of this blog said…. Loss of memories is hard, loss of Hope is even harder…

I’m clinging to that smidging of hope I still have left to hope that I’ll think differently some time soon……

 

 

 

 

How are you coping with Lockdown…..?

I found this unpublished blog lurking in the background last week. I must have forgotten to set the date on it so it’s been hiding unseen until today. Typing and photography have helped me through these last few months, daily activities, daily routine……I think I might have written this near the beginning….anyway, finally found and published now…..

I’m always thankful when I’m asked to write pieces as it makes me think, gives me a different writing experience and makes me feel useful. I’m sure I’ve said before but typing is my escape from dementia, that part of my brain not yet been infiltrated by the dreaded disease…..The people at Brace emailed me recently…

“BRACE funds world class clinical and laboratory research into Alzheimer’s and other forms of dementia to find better treatments, achieve earlier diagnosis and one day, a cure.”

BRACE stands out as an important charity with a unique role. Founded in 1987 by people whose families were affected by the disease, BRACE was drumming up support for dementia research long before the news broadcasts were full of dementia stories and a consensus formed that answers were needed urgently.”

They asked me to write a piece on how I’m surviving lockdown …This is a piece I wrote ……I’m sure if asked now, it would be very different…maybe….enjoy …..

https://www.alzheimers-brace.org/blog/adapting-to-lockdown-with-dementia

 

My playmates ‘No Sew’ genius mask….

Now I’m venturing out on the village bus, I obviously have to wear a face mask and I’ve been wearing them from start to end of journey. The disposable ones you can buy made me extremely hot and sweaty on my face. The posher ones are seem so expensive – people trying to make a killing while they can, I suppose…

And really weren’t very comfortable to wear. I really can’t imagine how front line staff wear them for a whole shift. Necessity just making them tolerate them I suppose. But many have spoken of sore ears, sore faces from the sweat, it must be horrible for them……I saw on our village facebook page that a villager has made 500 for locals – but much nicer to wear – how kind is that….I must have missed seeing them 🙄

Anyway, I have many wonderful playmates, but one in particular, Gail, has an amazing craft room at home as she used to do so much pre diagnosis, that now she still continues to make amazing things…..

I feel a special affinity with Gail as she lives in one of my favourite places near Blackpool, Cleveleys, the home the the beautiful shell and old man at sea. Her daily walk is one I do whenever I’m there, which obviously hasn’t been since last year. But it’s lovely to think of her walking the same steps….

As I said she’s very ‘Crafty’ and she decided to make a video of how to make a face covering, without the need to sew. Just what I needed! It meant I could have whatever colour I wanted and nice soft material. They really are very simple to make and even I found them simple – after a few tries……so now I have 3 tartan face masks which are much nicer to wear and washable…..3 simple men’s handkerchiefs turned into face coverings…..genius

You can see Gail work her magic on this simple to follow video….. 

https://www.youtube.com/watch?v=YcnsKFfSv4g

My active day is reducing…….

My dear Aussie playmate, Kate Swaffer. Posted a link on Twitter last week. It immediately resonated with how I was feeling. The person who wrote the article, Christine Miserandino, has Lupus but, as Kate said, it is:

“A great analogy of what it’s like living with Invisible Disabilities including dementia”

Indeed, it was how I’ve been feeling these last couple of weeks or so….The number of spoons I have at my disposal seems to be disminishing (you’ll have to read the wonderful article to see what I’m talking about) ….

The number of hours where my brain is capable of actively thinking, reducing……because the stimulation of the previous chaotic world is no longer with us, my brain doesn’t have that constant work out that it use to get. It’s becoming harder to think and do, to come up with ideas. My blog is the one thing that keeps me typing as typing these thoughts help me make sense of what’s happening. My trundles with my camera give me a focus for the day….but thinking, real constructive thinking is so hard at the mo…..

I was asked to think of 25 playmates the other day…I could think of a handful, no more, yet I know hundreds…..I was asked to put together a list of suggestions for a project, but it took me days instead of hours….my brain capable of a couple at a time and then I’d exhausted it…

I used to go on social media in the early evening, now my day stops about 5.30, I’m spent, nothing left, I just stare at the telly after tea …what will happen when I’m travelling home in the evening when travelling comes back again?

So the number of spoons at my disposal is reducing in number…lets hope the quantity increases when all this is over……now read this wonderful  article to find out what on earth I’m talking about, and thank you Kate for bringing it to my attention…

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

I’ve found something I can finally ‘cook’ again…..

Well I use the word ‘cook’ very lightly….I’d almost given up totally the idea of cooking in a pan on the hob again. So many disasters and burnt pans, ruined food…..but then something caught my eye in the village. I pass it almost everyday on my trundle but have never stopped to investigate……

Abbie, who also owns the adorable sheep that a much photographed by me…and who gave me a bag of wool for my friend Philly….

……also has hens which I can hear clucking away…..the sign she’s put up tells their story and how much loved they now are

I put my money in the honesty box and trundled my way home happy with my purchase….

Thinking back to only 6 or 7 years ago, I was a very good cook, every meal from scratch, a fair baker of cakes and treats galore, but dementia took all those skills away from me…not being able to coordinate pans, ingredients, timings…..but I couldn’t resist trying a simple egg once more.

Now you might be thinking , what on earth is difficult about boiling an egg….? Well it’s the distraction that catches me out. On a showery day as today was, as soon as I see the sun, I venture outside….so I had to be prepared. Funnily enough I could only work out how to work one hob, not sure why, but the others didn’t make sense. Maybe I always used to use that one, who knows. I thought it might be easier if I boiled the kettle, that would be one less thing to get wrong and get distracted while waiting for the pan to boil….

I set 2 alarms for the time. I didn’t have a clue how long to cook it for, couldn’t go upstairs to look it up on my iPad as by the time I’d get there I would be doing something else. 8 minutes should be fine, I thought… So I took my camera in the sun room and sat with one alarm on my lap, snapping piccies of the garden visitors

Until the sudden noise on my lap brought me back to now….and then almost straight away the one in the kitchen sounded it’s large shrill which made me get up immediately as the noise pierces my ears…

I had to suddenly think, what to do next? I automatically filled the pan with cold water, thinking it would immediately cool the egg down, but then just started peeling the shell away, burning my fingers as I did..🙄…just couldn’t think how else to cool the egg inside….once deshelled, I cut it in half and knew that if I went away I’d forget it….so sliced it more and put it on the buttered slice of bread…the golden yolk so fresh, it looked a work of art. I was so pleased with myself.

I know it will go wrong at some point. I’ll forget it’s on, be distracted, go out into the garden but today I didn’t ….today my brain behaved…I’ll have to pick my moment next time, just as this moment was right…

Such a simple warm boiled egg sandwich ……and how delicious it tasted….well the sheer fact that I’d boiled the egg, made it an achievement and delight to eat….5 more eggs, 5 more egg sandwiches or maybe even an egg salad ……onward and upward……

 

 

My first venture to the supermarket…..in a car

The only time I’ll know, and many of us will know, how this lockdown has affected our dementia is when we venture out. When our brains have to start thinking harder again, to decipher how to travel, how to book tickets, how to engage face to face with other people….that’s when it will strike us….we’ve not had to cope with the normal everyday challenges of being out and about. We’ve been safe in our bubbles of safety. Admittedly not everyone is as lucky as me. I know I’m fortunate to live where I am, have space to trundle, beautiful space. I’m even lucky that I have a village shop, a local pub that delivers a meal if I fancy it and kind people around, as well as obviously my daughters close by….so my bubble has been very compact…

I appreciate those in Care Homes may have deteriorated differently….not having seen family and now they’re a distant memory, maybe to be unleashed again, maybe not. The difficulty there lies with the Care partners. Will they be allowed to venture back inside and no longer be recognised? That will be hard….

The nervousness at the beginning of all this now replaced by the nervousness of it coming to an end…

I’m really not worried about Covid19….stupid woman many might think…but for me the worry is people, other people. Stuff having to be worked through in my head, a head that’s been calm and relatively empty of challenges of the everyday sort…all I’ve had to think about are my weekly Zoom meetings, my trundles, my garden, my birds, nothing challenging.

Yes it’s been lovely yet we will have to get back out eventually.

The other day, my daughter txt me to ask if I wanted to go to the supermarket with her, just to see how it looked, how it felt, not to venture out as she only needed the chemist. I instantly said no, the image of crowds, of queues entering my head. A few minutes later I txt back asking if I could change my mind and say yes, after all I’d be in the car, stupid of me not to go.

And so we did. We went the long way round and I asked her to stop so I could take a piccie of the cows on the Westwood looking chilled and relaxed…

Taking piccies instantly calms me, it’s what I did on train journeys simply looking out of the window taking piccies…..

We drove through the town, looking very ghostly with boarded up restaurants and only the odd person around and then drove out of town reaching the supermarket roundabout, more cars instantly visible…

McDonalds was now opened and queues of cars weaved their way through the drive in. Men directing the traffic, surrounded by what felt like hundreds of cars…it didn’t feel good.

Gemma parked away from the crowds in a quieter bit and I just sat and watched as she went to the chemist…no queues could be seen just a massive number of cars….people coming in and out of the shop. I only saw a few wearing face masks, my mind suddenly stopping trying to work out the rules again.

Luckily Gemma didn’t have to wait in the chemist, no queue there and was back in minutes….thankfully…….as I didn’t want to hang around, feel trapped and surrounded…

We ventured back home again, the traffic becoming less as we approached the village. Suddenly we passed the sign again, and entered my bubble of safety. I could hear me breathe a sigh of relief…..

It’s going to take a lot to get back to ‘doing’…..but for now, I’ll stay in my bubble taking piccies…

Confusion again as the rules change……

I knew things would change eventually but oh how they throw me into confusion when they do……news that the village bus is starting up again was the culprit this time….am I ready to be encased with others in a metal shell?
I feel more relaxed when decisions are taken out of my hands…I almost feel pressured into using them. If they’ve been told they can run again, surely it must be safe…? But I’m still happy in my bubble, which I suppose should also be a worry because how long will I want to stay here, not wanting to venture further afield?

Strangely, it’s not Covid 19 that’s uppermost in my mind, It’s not even fear….it’s the thought of being close to people again, the thought of not remembering rules, of forgetting my face mask or whatever other rules I’m suppose to follow, or not…..one playmate was shouted at recently for getting the rules wrong in a supermarket, if that happened to me I’d be stunned and head straight back home and my bubble again…

Bigger numbers able to meet up…another change…6 people feels like a crowd compared with the singles and couples I’ve been meeting on my trundles…

This strange world that is no longer strange has become my happy norm….going back will feel like being plunged into another strange world, one that involves more rules to understand and digest…..wearing a mask 😷 may become the new normal. Some villagers have been complaining that not everyone wears a mask in the village shop….I didn’t know you had to…when I suggested the village shop might sell them, lots of replies came back with instructions of how to make my own and suddenly I felt overwhelmed. Overwhelmed until one kind person, the person that I gave my pink bike to, posted that she had plenty and would post some through my door……kindness instead of confusion……

I’ve already lost many newly discovered trundles as the need to venture onto the road partway is now impossible, as cars speed by and have forgotten their considerations of previous weeks….when did cars drive so fast?

So am I ready to go on the village bus with new rules, new ways of sitting? Not at the beginning. I think I’ll trundle down To the bus stop to see if anyone else is prepared to accept this new challenge first; maybe watch to see what it involves. A mask is compulsory, I think, and I don’t even remember to always wear that in the village shop yet, so what if I forget? Will people understand, will people be kind? As I said, it’s not fear of venturing out, it’s uncertainty, of forgetting, of not fitting in….causing confusion And sadness…

Someone asked me the other day if I’d noticed big changes, a big deterioration in me…..well, no, because I’m content in this bubble, happy confined to a small radius encompassing my village. Me thinks those shocks will await me once I get the courage to venture into this next new strange world…….what will I have forgotten, what skills will have gone and will I feel calm or anxious in the coming new strange world

Maybe another walk in the sunshine will help

Living alone helps me cope…

Our Dementia Enquirers Research for Minds and Voices is still continuing, only not face to face, as would have been ideal, but via Zoom and on Tuesday me and Damian did another interview, this time with a couple. It reminded me how I’m living with an unwanted companion where my playmate had his lovely wife, with the right attitude to enable rather than disable. Care partners attitude is so important to how the person with dementia lives, yet I know I’m lucky in not to have to rely on that special someone.

I’ve often said that care partners and people living with dementia live parallel lives, rarely meeting yet both equally important. Whereas the only companion I have at home is dementia, but that’s how I like it, only having to cope with me outmanoevering dementia and not having cope with someone else coming at it from another direction…

I had a sharp reminder of how painful the sun can be during the recent hot weather. Sun tan lotion never occurred to me….and it still didn’t register when I got home from my trundle with what appeared to be a painful sore neck. Even the next morning when the hot shower stung, I didn’t have a clue why, couldn’t work out anything logical, no hints to help me discover why….then I went for another trundle and the sun beating down on my neck suddenly dawned the realisation of why it was painful – simple sunburn….

I was actually shocked that I hadn’t thought of it. I’d always used sunscreen in previous years, but this year dementia had taken away that memory. If I lived with my daughter she would have reminded me instantly…..but that’s a disadvantage of living alone I suppose. No one to remind me there and then. I just muddle through and suffer the consequences when I get it wrong….but what does it matter..? My neck was fine after a few days so all is well again….

Because I live alone, I have to find a way or dementia will have the upper hand. I try and keep my unwanted companion firmly in it’s place but obviously, sometimes, it’s grip is tighter than I can hold down and it rules the house. Take for example, the suppers I find in the microwave the next day when I open it for that days supper, all dried up and unrecognisable. I just clear up the mess and start again….my uninvited companion laughing in the wings. If I lived with someone they would have reminded me, or probably cooked for me. But then I might not even be able to use a microwave, deducting yet another skill from my ever diminishing tick list of skills….so in my mind, what does it matter? It’s not a failure, just a mishap.

I need to be alone to make my own mistakes, just like you would do with a child, only we don’t often learn from our mistakes, but it makes us feel good to keep trying…makes me feel good to sit there with food in front of me that I’ve made – notice I said ‘made’ and not ‘created’…..long gone have my excellent culinary skills of a previous life….

I feel good, pottering in my garden, not weed free but who cares? The weeds aren’t in such numbers as to strangle the flowers, so everything is fine.

I feel good mowing my own lawn, with wiggly lines instead of the perfect precision of old, with edges crisp and straight that are now, at best, can be described as simply edges …..but what does it matter? They’re my wiggly lines and my wiggly edges and as long as I can still manage in a fashion I’ll keep going. I have my regular birds that come and keep me company

Stuart helps me with the heavy and big things, the hedges too high for me to reach without a ladder….I learnt recently that step ladders are out of bounds now 🙄……

But it’s me making the decision when to ask for help and when to muddle through as happy as Larry……no one there to take over or criticise.
‘Burden’ came up quite a few times during the interview. That feeling of being a burden to our care partners. When all this Covid stuff started, my daughter and son in law asked if I wanted to move in with them but I knew it wouldn’t work. I’d feel guilty for impinging on their daily life. They’d see me struggling and come to help instead of just leaving me to it to make a mess as I would at home. So kindness sometimes stifles those tiny things we can still do albeit not in the right way or perfectly. The only thing that almost swung me round was the thought of being with Billy all the time….but then I thought how he’d be out with his mates most of the time,

Billy resting after his daily workout 😹😻

Perfect doesn’t exist in my language any more as I know everything I do now wouldn’t have been acceptable to me years ago, but now I can say, ‘what does it matter’?

So living alone helps me cope with my unwanted and invited companion of dementia and that’s how I want it to stay…….

Baby steps into the big wide world again….

Not sure why this blog isn’t publishing, but I’ll try again…🙄

It never ceases to amaze me how quickly I forget an old routine when I create a new one….last week I confined myself to the house cos of my sprained ankle, because I know me well…..if I’d have gone into the garden I would have got carried away and started all manner of digging, hoeing, cutting which would have led to far more than pottering gently.

I have to have a routine but this time an indoor one…..

So instead, I stayed inside, which is unheard of for me. In fact I don’t remember the last time I stayed inside for more than 1 day and this was 8 days 😳…..I did venture out in the middle of my self imposed detention to water my garden but promptly stumbled on the hose pipe with my bad ankle, which made it even worse, so I suppose my confidence went as well….I’m not one to lose confidence easily either 😳🙈….but I suppose that’s how important I saw the need to get my foot better. My trundles and independence being so important to me……knitting squares for my DEEP hug blanket was obviously a safer option, and thank goodness I had that task; it was there just waiting to keep me occupied….

I’d finished my Minds and Voices part of the DEEP Hug blanket project, so now decided to do the same for my Monday Zoomettes – online zoom meeting for women with dementia that has become sooooo important, and even more so now.

I set myself the task of finishing it within the time of self confinement…..and I did with a few hours to spare…..who knew Zoomettes was such a long word!

I still havn’t mastered the ‘S’ but I’ll have more practice in my next piece when I do ‘I want to Speak’ as on the cards we use for each zoom meeting.

Anyway, I’ve been rambling…as the main aim of this was to tell you about my first trundle. I knew I’d only have to do a little walk, just to test me out, so I decided it had to be special.
So on Saturday morning I headed out of the door at 05.30am as the sun was rising

and trundled to the village pond…..

The peace in the village at that time in the morning was just what I needed. I could sense everyone wrapped up snug in their duvets behind the closed curtains and here I was with the village all to myself. All I could hear were the birds, no traffic, no voices, just nature…

As I reached the pond, even the ducks were only just starting to stir, many asleep on the grass and opening one eye to see who this early intruder was and whether I’d come with breakfast – sadly I’d forgotten that bit…..🙄

I knew there were benches ready for my aching ankle to take to rest

And an old one in particular had always caught my eye as it was dedicated to a villager long gone – Doreen. Maybe the family no longer lives in the village, I’m sure the villagers would know .I’d always wished I could give it some much needed loving attention and clean and revarnish it, but worried about upsetting family…not that I’d know how to do it sadly….but it’s such a lovely memory of someone…

Sat there in the silence, just me Doreen and her bench, it felt like she was with me. She must have loved the village pond as much as I do and suddenly I didn’t feel alone but strangely comforted and relaxed, sitting in companionable silence.

Lost in my silence, I lost track of time and I noticed the sun had risen  higher in the sky

and the ducks began to stir, quacking their conversations to each each other and preening themselves for the day,

I left the company of Doreen and promised I’d be back.

As I trundled back the short way home, the early risers were in evidence. The shop assistant making her way to open up bade a cheery hello and the day was starting once more in my lovely village…..but just fora while, just a short little while…..me and Doreen had it all to ourselves………

P.S…..could resist this one last piccie of these two who gave me my first chuckle of the day…..

Baby steps out into the wide world again…..

It never ceases to amaze me how quickly I forget an old routine when I create a new one….last week I confined myself to the house cos of my sprained ankle, because I know me well…..if I’d have gone into the garden I would have got carried away and started all manner of digging, hoeing, cutting which would have led to far more than pottering gently.

I have to have a routine but this time an indoor one…..

So instead, I stayed inside, which is unheard of for me. In fact I don’t remember the last time I stayed inside for more than 1 day and this was 8 days 😳…..I did venture out in the middle of my self imposed detention to water my garden but promptly stumbled on the hose pipe with my bad ankle, which made it even worse, so I suppose my confidence went as well….I’m not one to lose confidence easily either 😳🙈….but I suppose that’s how important I saw the need to get my foot better. My trundles and independence being so important to me……knitting squares for my DEEP hug blanket was obviously a safer option, and thank goodness I had that task; it was there just waiting to keep me occupied….

I’d finished my Minds and Voices part of the DEEP Hug blanket project, so now decided to do the same for my Monday Zoomettes – online zoom meeting for women with dementia that has become sooooo important, and even more so now.

I set myself the task of finishing it within the time of self confinement…..and I did with a few hours to spare…..who knew Zoomettes was such a long word!

I still havn’t mastered the ‘S’ but I’ll have more practice in my next piece when I do ‘I want to Speak’ as on the cards we use for each zoom meeting.

Anyway, I’ve been rambling…as the main aim of this was to tell you about my first trundle. I knew I’d only have to do a little walk, just to test me out, so I decided it had to be special.
So on Saturday morning I headed out of the door at 05.30am as the sun was rising

and trundled to the village pond…..

The peace in the village at that time in the morning was just what I needed. I could sense everyone wrapped up snug in their duvets behind the closed curtains and here I was with the village all to myself. All I could hear were the birds, no traffic, no voices, just nature…

As I reached the pond, even the ducks were only just starting to stir, many asleep on the grass and opening one eye to see who this early intruder was and whether I’d come with breakfast – sadly I’d forgotten that bit…..🙄

I knew there were benches ready for my aching ankle to take to rest

And an old one in particular had always caught my eye as it was dedicated to a villager long gone – Doreen. Maybe the family no longer lives in the village, I’m sure the villagers would know .I’d always wished I could give it some much needed loving attention and clean and revarnish it, but worried about upsetting family…not that I’d know how to do it sadly….but it’s such a lovely memory of someone…

Sat there in the silence, just me Doreen and her bench, it felt like she was with me. She must have loved the village pond as much as I do and suddenly I didn’t feel alone but strangely comforted and relaxed, sitting in companionable silence.

Lost in my silence, I lost track of time and I noticed the sun had risen  higher in the sky

and the ducks began to stir, quacking their conversations to each each other and preening themselves for the day,

I left the company of Doreen and promised I’d be back.

As I trundled back the short way home, the early risers were in evidence. The shop assistant making her way to open up bade a cheery hello and the day was starting once more in my lovely village…..but just fora while, just a short little while…..me and Doreen had it all to ourselves………

P.S…..could resist this one last piccie of these two who gave me my first chuckle of the day…..