Tag Archives: living well

Me and my haversack

Some people ask me ‘why do you always have your haversack, why not a handbag for every occasion’? My response is usually ‘why not?’

Actually the reason is far more complex than that. Remember, this is my experience of dementia, so this is my reasoning and others may think differently.

The more I adapt to having Alzheimer’s, the more I recognise the need for familiarity, consistency and routine.
My haversack is a constant – I feel safe and secure in the knowledge that everything I may need is in my haversack. It bizarrely makes me feel safe. I don’t care whether it ‘goes’ with the occasion or matches – I feel safe. If I suddenly had to transfer everything each time I wanted a different bag to match the occasion I would feel panic – so I don’t. Since I had a stroke, I’ve also developed a ‘wobble’ and legs and brain sometimes forget to talk to one another so I fall over or stumble. Knowing I have my haversack on my back also means my back will have a cushion to land on…so I don’t worry about falling over, which in turn makes it less likely:) – win, win.

I get over this issue with coats by having the same things in all the pockets – it’s a ‘comfort’ thing I suppose. I know that each coat pocket carries the same thing so I don’t have the same concern about wearing coats.

It’s important that things aren’t moved around my haversack but it also applies to the house or office – if they’re not where they should be they no longer exist………
At work, if someone moves things around on my desk I become disorientated and feel confused – sounds extreme, I know, but it’s just how it is. Someone once used my desk and put all my things in a pile. I spent the next day putting everything back in its place and ‘rediscovering’ them – if post it’s are moved, they no longer exist and don’t get actioned – not good at work! I’ve moved offices this week  to make way for the trainee ‘gurus’ – havn’t gone into the wrong room …………..yet………………
As I said at the beginning, this is my experience – if you know someone with dementia in their life and are unsure of their needs, ask or observe them to find out what makes them feel secure.

Billy feels safe in any size box left lying around....
Billy feels safe in any size box left lying around….

Advantage and disadvantage of living alone with dementia

I’ve had conversations with many people lately about the struggle, frustration, guilt, joy and loneliness felt by those caring for loved ones with dementia. It got me thinking the impossible question – which would I prefer, to be the one with dementia, or to be the one caring for and watching the person I love become a shadow of their former self? May sound an odd choice to question, but each has it’s own unique tragic side. Both sides of the story are polar opposites in relation to challenges faced.

For those caring, the daily challenge seems one of survival. No one would question the love they have for the person – this they have in bucketfuls – but at what cost to their own life? After all, many have had to give up work, their former lifestyle, have friends who no longer visit. They have the daily challenge of keeping their loved ones feeling safe and secure – no mean feat when faced with the constant repetition of the same question of who they are and where they are. Their love and loyalty know no bounds but at what cost?

As someone living alone with Alzheimer’s and currently in the early stages – I’ve come to the conclusion that I’m relieved I live alone, not to have a partner. I don’t think I could have asked or expected anyone to devote their life to me when I start to lose the mental capacity to look after myself. I certainly don’t want my daughters to have to make that choice. That’s why the decision has already been made, discussions had and documented in my Lasting Power of Attorney. I couldn’t live with the guilt of them having to make that emotional decision themselves in the future.

 So much more needs to be done for those living alone with dementia but also to support those who have put their lives on hold to care for a loved one – a challenging dilemma……

 

As always, I always trying and focus on the positives in this cruel situation I find myself in. The advantages are there is no one to question my reason for watching the same programme back to back or my wish to sit in silence without any noise to confuse the brain. We can’t change what is happening to us so we have to adapt our lives to make it easier to live with this disease.
However, it also means you have no one to comfort you on the darker days, no hugs of reassurance, no words of encouragement. I’m lucky as I get hugs from my daughters each time I see them, down the phone and on emails…

There are many people living alone with dementia who must just drift over the edge of losing capacity without knowing or planning – what happens to those? As friends stop visiting or they feel in need of support and no one is there…..

Kate Swaffer’s blog is absolutely fantastic – highly recommended. Click on the link below for another woman’s experience of living alone with dementia:

http://kateswaffer.com/2015/02/12/guest-blog-by-dr-judy-galvin-on-living-alone-with-dementia/

Remember, as always, this is just my opinion of the subject. It’s purpose purely to evoke thoughts and discussion. Everyone has their individual right to their own opinion and experience. I can only give my view or experience as everyone’s experience is different.
Feelings remain when facts are forgotten

Everyone of every age should attend a Dementia Friends session
Everyone of every age should attend a Dementia Friends session

 

The new found advantage of silence

I always use to want back ground noise – whether it be music, television, radio – I always had something on in the background. But recently I’ve found my brain prefers silence. It doesn’t have to compete with background noise and it can function better.
We all learn to adapt to new situations. My friend has tinnitus so a world of silence would be her idea of hell as this exacerbates her problem. What’s important to understand is that it’s not a negative for any of us to have to adapt to new ways.

For me, to no longer be able to do 10 things at once mustn’t be seen as a weakness, it’s simply an adaptation which has to be accepted in order to function better. What does it matter that I can’t listen and write at the same time. What does it matter that I can’t answer the phone and continue to do something else. What does it matter if I can’t talk and follow a programme on the telly. None of these things matter any more. I now love to sit in silence and write. I now love to sit in silence and read. I now love to talk or simply listen with no added distraction in the background.
I now love to just sit or walk – in silence. It’s amazing what you hear when your brain isn’t confused with other things.

Peaceful walk in the park
Peaceful walk in the park

Channel 4 News Visit for Still Alice

Not sure what I was expecting when I was asked to allow a film crew into my house but I wasn’t quite prepared for the amount of equipment that came in with them…….. The cameraman, producer and presenter, Victoria Miller Macdonald, (personal joke) were all wonderful people and clearly very good at their job. The amount of furniture moving and  filming that is needed for such a small piece was staggering.

I must confess to thinking that the interview would appear melancholy because I wasn’t sure which bits they would leave on the cutting room floor. However, I think the piece was very well balanced and showed positivity as well as reality. The only negative, if there could be one, was the reference to me ‘suffering’ on the web site, but I think both myself (and Julianne Moore in her interview) reaffirmed the notion that we do not suffer, we ‘struggle’ with the disease. Victoria commented that I only paused to think of the right words briefly. What she wasn’t aware of was the two hours I’d spent prior to their arrival reading and re-reading my notes to ensure I had some words in my head. This is all part and parcel of the everyday adaptions you have to make to fit into normality.

My special moment in the piece on the news programme on Friday was when Julianne Moore actually remembered meeting me. I’m sure it was genuine and not stage-managed as her eyes lit up. I’d said to her that she had the advantage over me as she could choose to remember our meeting, whereas I would forget. Well the memory is still very clear in my mind and the photographs and signings provide an even clearer picture. She has, through making one film, raised more awareness for dementia than I could ever wish to do. She had done so much research before playing the role and it certainly showed when she spoke to us.

I have a very short shelf life in my ability to raise awareness and have told the Alzheimer’s society to make use of me while I’m able. I’m a very private person who has allowed anyone who cares to, read about me and my experience of living with dementia. It’s my way of speaking out for those who feel they have to remain silent through embarrassment.

Not everyone will agree with what I have to say or the way I say it, but it would be a sad world if we all had the same thoughts and feelings. All I want is for my words to evoke dialogue and discussion. I’m not embarrassed to have dementia. It is a brain disease that can affect anyone.

After the film crew had left, I couldn’t remember half of what we’d filmed and some came as a total surprise when it was shown on Friday!!
They always say experts make things look simple – next time I watch a 5 minute interview on telly, I’ll know the amount of effort and time it has taken to produce.
Thank you to all those who sent txts, emails and kind comments. Another wonderful experience thanks to the Alzheimer’s society.

p.s. The fact that I’m awake at ‘silly o’clock’ means that ‘normal o’clock’ isn’t an option. This means I missed the fabulous news that Julianne won the BAFTA last night. It also meant I missed her thanking me, Christopher and Gillian in her acceptance speach. and in her interview with the press afterwards. The fact that she remembered us and bothered to mention us was very very special.

https://m.youtube.com/watch?v=cKtw1sulAfY

http://www.independent.co.uk/arts-entertainment/films/news/baftas-2015-julianne-moore-wins-best-actress-award-for-still-alice-10031998.html

Julianne signing MY Still Alice book!
Julianne signing MY Still Alice book!

‘Still Alice’ Charity Premier

On Thursday, at 11.55 when this blog is published, I’ll be in London.  I’ll probably be nervously wandering walking around waiting for 12.30 to arrive so I can walk in the Curzon Theatre to await the arrival of Julianne Moore and the first British showing of Still Alice.

First, I’ll be meeting Christopher (who is living with dementia) and his wife Veronica who appeared in a Channel 4 programme called ‘Who Are You’  with Grayson Perry. I’ll also meet Angie ( a dementia support worker) and Gillian who she supports. I’m so looking forward to meeting their friendly faces first and having a chat over coffee to calm our my nerves.
If all goes to plan, at 1pm Julianne Moore will arrive and do all her interviews and will then sign up to become a Dementia Friend before introducing the film. While everyone is watching the film she will then come and spend time with us, chatting….with us……..amazing.
It will all be filmed and recorded so I hope that will enable me to remember this very special day for a long time – in the future, when my memory fades, my daughters will be able to watch the footage and I’m sure I will sit with them and still feel the very special emotion generated from this very special day.

Update on Channel 4 News – article is now being showed on Friday and not Thursday as first thought…….

Don’t anyone pinch me so I wake up from this dream – I’m happy where I am, thank you.

 

The most surreal week yet…

This week I’ve got the most surreal week so far……
Monday: Channel 4 coming to the house to film for Channel 4 News (to be shown Friday evening)
Tuesday: meeting with NHS employers to discuss their plans for two Employer Toolkits. One is for employers to support employees with symptoms of dementia and the other to support those juggling work with caring for someone with dementia
Wednesday: working day but also deadline for an article for The Guardian newspaper
Thursday: London at the premier for Still Alice – meeting Julianne Moore for a chat and various reporters
Friday: just working – I think…

Saturday: filming me, Sarah and Gemma chatting round the kitchen table (obviously the one I’m looking forward to most:)))

If anyone had told me my diary was going to look like this a year ago I would have laughed very loudly. I suppose all the above have to come under the heading of ‘advantage of living with Alzheimer’s’. I’ll just try to take the opportunity to raise as much awareness of dementia as humanly possible in one week.

Any week is Dementia Awareness week in my book!
Any week is Dementia Awareness week in my book!

Poem by Billy the Cat

 

Life is very simple
From a cats point of view
Loving folk around you
And a cosy place to snooze

You humans make life hard
Full of worry and daily strife
Take a tip out of my book,
Relax and enjoy your life

It’s far too short to waste
On problems you can’t solve
Think instead of sorting
How to become more involved

I like to go for nice long walks
And adventures in the night
And then come home and snuggle down
with loved ones in my sight

So all you humans out there
When life just gets too tense
Just close your eyes and think of me
You know it makes purrrrfect sense

(As long as you don’t forget my biscuits…………)

Chilling Billy
Chilling Billy

New experiences

Jim came to see me last week from the BBC. He is making a short documentary following on from the forthcoming release of Still Alice. Three of us with Alzheimer’s at different stages are being asked to make a video diary of snippets of our life living with dementia.

Sarah, my daughter was there too so that at least someone else would know how to use the camera once Jim left.
He was very patient, bless him. He went through the sorts of filming he wanted me to do. Sarah kept asking the Spielberg questions around types of shots and I kept asking where the on off button was………..:))) I did a bit of filming at the weekend and then had to do it again as I obviously hadn’t pressed ‘record’…..and then again as I hadn’t the mike the right way round……..ha!

Jim has kindly offered to let us have a copy of all that we tape, so me, Sarah and Gemma are going to take this opportunity to record our own conversation at the kitchen table. This will  give them something to look back on in the future as a record of a time spent together simply chatting as a family does.

It all seems a bit surreal but I feel so lucky to have been offered such an opportunity to do something different. I know lots of people have done this sort of thing but I haven’t.  Every time an email appears in my inbox asking ‘Would you be able to or ‘would you like to’ I now just say yes, without even thinking, just to grasp every opportunity while I can. I’m so grateful to the Alzheimer’s society for sending all these opportunities my way – thank you to all those who have asked me to be involved:)

Take 346.......
Take 346…….

 

 

 

Billy the Cat considers a dementia friendly holiday

Me sulking
Me sulking

Wendy left the iPad lying around again, so I thought I’d grab the opportunity to put paw to keyboard as I’m not happy.

They’re sending me to the cattery again…..they think I don’t know…..but I’ve seen the signs….
The first was Stuart squeezing himself into the salopettes and then the next few days/weeks spending all day on the bike. I’d never book a holiday straight after Christmas – although come to think of it, I’d never book a holiday..They should take a mouse leaf out of my book and simply have a constant supply of biscuits on the go – no more, no less. He now he looks ‘svelte, sleek, streamline and ready for the slopes’ (I’m sure those were the words he used)………

Gemma’s perfectly formed so no need for drastic exercise action ( what do you mean, ‘creep!” I have to keep in one of their good books!) but for ages now, all she’s done is monitor the snow forecast in some far off place instead of concentrating on me. Worse of all, I’ve seen the horrible house cum cage thingy they squeeze me into to get me to said cattery.

It got me thinking. I hate being away from home, as well they know, so I wonder what we need to do for Wendy? I think she’d go on holiday without a struggle so no need for horrible cage thingy. However I do think she’d need familiar things around her. I’d like my empty cardboard box with me – I’d let Wendy borrow it if she really wanted to. What? Why wouldn’t she want to borrow my empty cardboard box??!!!
A holiday can be enjoyable for anyone (so I’m told!). With careful planning there’s no reason why it can’t be just as enjoyable for those living with dementia. The main things to consider appear to be:

Be realistic on the amount of time to spend away. Wendy loves weekends away – any more and I miss she misses me too much.

If travelling with a carer to family or friends, discuss how best they can help before you go. People are often more than willing to help if they know beforehand. It’s also an opportunity for the carer to get a break and helping hand – never forget the carer.

Some people living with dementia can find it difficult to cope in new surroundings – involve them from the start. The experience can be very different according to the stage of dementia. Wendy would like lots of printed maps – visual and in words and not to be rushed.
Make sure they carry the name and address of where you’re staying at all times.

If staying in a hotel, a small friendly hotel is often better than a large one with lots of confusing floors and corridors. Be honest with them if you’re at all worried. If they’re worth visiting they’ll be more than accommodating and understanding, if they’re not, steer clear.

Each individual is different but crowded places are usually best left to the crowds.

Make the person feel safe and secure.

The earlier you start preparing for the holiday, the less stressful it will be.

Make sure you have ordered enough medication to last the holiday.

If going abroad – check the insurance covers any accident or illness linked to dementia

Wendy likes walking alone on the fells in the Lake District – she may now need to take compass, maps, GPS equipment, tent, flare gun and survival kit in case she gets lost or if all else fails, just tie a long piece of string round her wrist to haul her back in – ha!

Plan, plan, plan – don’t leave anything until the last minute. Be organised and enjoy.
I mentioned at the beginning that Wendy might like familiar things around her – maybe she could take me! Mental note to self to make oneself indispensable for cuddles……..
The Alzheimer’s society have a great fact sheet on the subject that goes into far more detail:

Travelling_and_going_on_holiday_factsheet

After all I’m just a cat – a very unhappy cat who’s being abandoned for the week. I can dream though…….

Me and my friend Bruce
Me and my friend Bruce

p.s. I’ll send you a postcard next week from my hotel prison cell

A room full of memories

My daughter Sarah's first shoes
My daughter Sarah’s first shoes

I’ve always had a box where I’ve stored selected special items from the past – Sarah and Gemma’s first shoes, letters from them when they away from me, memorabilia from special events. I suppose I now look upon this blog as a means of recording recent memories of my thoughts and moments in life.

Since I helped Sarah pack her bags and move into her own house, I now have a spare room which I’ve turned into a memory room. On the walls are pictures of special places, special people and special prints. It has a calm atmosphere with nothing but happiness on the walls.

My dad during WW2
My dad during WW2

I imagine you’ve all got a small corner somewhere in your home where you also display things like this – if you haven’t, I’d urge you to dedicate a small (or large) piece of wall somewhere in your home where you can display, however randomly, photos that bring a smile to your face,  of special people and special places.

When I walk in my room, the only emotion I feel is one of happiness.