Alzheimer’s and living

Sometimes, on a good day, I find it hard to believe I have Alzheimer’s.  I question whether I have ‘dementia’ as a symptom.

Of course it doesn’t last long the wonder and the doubt, because I looked at how confused I get at certain times, and the lack of memory intake of recent information amongst other things.

What I am understanding is how I can never be seen as totally ‘normal’ and I then think how can anyone want to be friends with me knowing that I am slightly broken?   I think I have always been a person who spends a lot of time alone, feels comfortable with my own company.  Sometimes that can be a sort of a silent world, when I have no radio, tv or music on.  The silence feels okay and I don’t feel lonely, but I do worry that it is my way of retreating from a world that I have always felt not quite at home in.  That is of course, the dyspraxic part of me speaking, but it has an impact on how my Alzheimer’s is.

When my ability to be coherent and indeed, sensible in my thoughts, ideas and speech shines it is difficult to see any brain disease.  But, I know it’s there.   I know my vision is currently a problem.  Patterns are beginning to dazzle, confuse and mislead me into being cautious of levels of flooring.  Steps where there are no steps in changes of colours, missing steps where there are steps because of the lack of contrast.  This is all new for me, and quite I feel quite shocked by it.  How can I mentally feel so alert and normal still and be affected by these Alzheimer’s symptoms at the same time.  I am grateful that my progress is still slow and is more physical than mental.  I am fascinated by all this and would love to be able to have an MRI or scan or something that I can look at and see exactly what parts of my brain have ‘holes’ now.  I loved the neuroscience part of my Psychology degree and if I had the energy I would really like to read current thinking on it!

I have been reading books again which is good.  I took my kindle on holiday to Cuba, yes Cuba! and read about 6 books, lying in the shade on the beach in over 30 degrees heat!

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Going through airport check in can be a problem now as they try and hurry you but I can’t be hurried anymore, the more they chivy me along the more flustered I get.  I should have learnt the word for dementia in Spanish before I went!  Booking assistance is a bit hit and miss and not really available/understood in some countries.  However, I love travelling still and don’t want to stop until I physically have too.

I loved Cuba and its people who have been shielded from a totally consumer driven lifestyle.   They are friendly and if they stop to talk to you in the streets, they are not trying to sell you anything, they just want to chat.  The county is lovely but like stepping back in time in parts with oxen ploughing fields, although there are tractors too.  Cubans are proud of their country and who they are and I feel deservedly so.  Their political history fascinates me and I realise that I hardly knew anything about it other than the words: Fidel Castro, Che Guevara, revolution and Communism, and that says very little.  We had a private taxi and a guide who was so knowledgeable and spoke with an Eton accent!  He laughed telling us he had no idea how when learning English in school he managed to get his posh accent!  Us British are so embarrassingly poor at learning languages, why the heck don’t we take pride in pushing languages in schools?

Being in Cuba did not present a problem for me at all, I don’t think I mentioned it to anyone, I didn’t need to.  I think the simplicity of these countries do not have visual difficulties of shiny floors, fancy patterns etc.  To my mind we have become like magpies obsessively attracted to a complicated shiny world.  Bring back simplicity in architecture, and design both inside and out I say!

I can still travel the world making memories of being in these places that sticks in my mind and live well with the brain disease Alzheimer’s.

 

 

 

Sunday Morning…

Sunday morning. Ella my cat is hell bent on getting me up does everything she can. She learns quickly, anything that irritates me will get me up to stop her. Licking my face, touching me with her paw; claws out – but gently. That gave me a bacterial eye infection. My arms have strange scratches that I don’t remember getting but know the culprit. She never does anything maliciously, I believe that there is not a bad bone in her body. She is a delightful, loving companion, but she likes to be fed at her own times. She can gently touch my face, and oh so quietly, meows close to my ear. She starts chewing things, pushing things knowing that it will exact a response from me.
No Ella. I say to her.
She will move on to something else. What is there that she can chew on the bedside table. Oh there is the necklace hanging on the bedpost, it is made of seeds brought back for me from the Caribbean ten years ago. Nutmeg and all kinds of fragrant seeds that I love to smell when I go to sleep. She will chew it a bit then leave it, most distasteful for a cat!
Next she moves..on..to…the…emergency….cord…………… ORANGE LIGHT FLASHING, BEEP BEEP BEEP… OMG she has managed to pull the cord and called an emergency. For goodness sake Ella what have you done!
Beep, Beep, Beep…
“Hello, you have an emergency?”
“Sorry, Sorry, my cat decided to wake me up by pulling the cord”
“No emergency, you are ok?”
“Yes Yes I am fine. Sorry about my cat”
“Ok then”
“Bye”
I made Ella wait for her breakfast after securing the cord out of reach. It will not happen again 🙂

Dementia: Witnessing release is a comfort

blue_irises_by_naglets-d2yie11I am watching my Mum slowly succumb to her dementia daily, but it feels like I am seeing it from the inside.  I don’t know how to describe this so you can understand.  I am invisible in a room full of people, Gill has dementia so do we include her or not?  Am I the only one who is experiencing this feeling of when this is my turn, because you may not get dementia.

My Mother’s name was Iris, and like the flower she was a very complex person.

It was Sunday 14th June, our family had somehow managed not to avoid each other and all visited my mother together.  So, my Dad, my Brother and Sister-in-law, Sister and Brother-in-law, nieces and my daughter were in my Mothers room at the nursing home.  The rift in the family growing wider and wider with my sister and her family on one side fighting some bizarre war in her head with us all, and everyone else at ease with each other on the other side.  My Dad torn in two in the middle  My Mum lying between us, her breathing ragged but looking peaceful as she is in her final hours.  She does not seem aware that anyone is with her, but I believe she can hear us all and knows that for the first time in years we are all in the same room together.  We spent the day chatting about our memories, listening to some music, and talking generally amongst ourselves.  My mother may not have appeared conscious enough to join in, but it felt like it was normal family get together with people chatting and laughing and I am sure she was with us.

We had the call later that evening to say she had passed peacefully away at 10.34 pm.  I believe she had waited until we were all together.

I cherish having visited her every day the weeks at the end.  My daughter and I played her favourite hymns on her iPhone and watched her tears.  We played her favourite music and sang along (out of tune but no matter it was fun).

She was no longer able to swallow, so she had no food for weeks, and finally she could no longer have liquids.  Every day the nurse and doctor would say “it won’t be long now, she may pass tonight”, and the next day there she would be defiantly showing she was not ready to go.  Fourteen days she continued without any liquid, and everyone was amazed by her stubbornness, and strength of character to fight to stay with us.

One of the nurses sat down with me and explained how they knew she was not in any pain, at the end I don’t think she was, before I am still not sure.  Her death was natural without any pain relief so I am sure she was aware of her last day with us all.  Yes, I can now see that perhaps it is easier for us to want her to be given pain relief just in case, but then it could have changed her perception of her final hours.  So have I been wrong?    No; my view now is that a small amount of morphine ‘as and when’ may have been better when the sores were painful.  But, then at the end when she had no pain = nothing.

The carers thought she was lucky they said, most people never have visitors.

I designed and created the Order of Service on my laptop, and my brother had it printed up.    We found a poem that my mother had cut out and stuck in her book and I read that at her funeral.  We had no flowers apart from a single spray that lay across the coffin from the family; blue irises and white – roses, chrysanthemums and others.  Instead of flowers my Dad wanted donations to ALZHEIMER’S RESEARCH UK if people wished.   Thank you Dad x

She is gone

You can shed tears that she is gone
Or you can smile because she has lived
You can close your eyes and pray that she will come back
Or you can open your eyes and see all that she has left

Your heart can be empty because you can’t see her
Or you can be full of the love that you shared

You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday

You can remember her and only that she is gone
Or you can cherish her memory and let it live on
You can cry and close your mind, be empty and turn your back
Or you can do what she would want: smile, open your eyes, love and go on.

Written: 1981 David Harkins 1959 -Silloth, Cumbria, UK

(This is also the poem that the Queen chose to be read at her mother, the Queen Mother’s funeral which is why my Mum loved it as she was a staunch royalist)

I am glad I had time to make my peace with my Mum, I am glad I had time to sit with her, talk to her and be back in my family.  I am glad I witnessed the end of her dementia, it has left me feeling comforted with my own dementia.

A new chapter with my family now begins.  I need to visit my Dad on a more frequent basis to support him, and do my part in taking care of him to stop my sister from mentally ‘abusing’ him.    This scares me because staying strong and being capable takes more effort than I think people realise.  Still, it’s what we do isn’t it?

My first week in my new home

Think I have overdone the unpacking, sorting and painting of furniture this week and slept most of yesterday!

Things are sorted out in my new flat and looking nice and I am now getting used to living alone again.    I have noticed as I have been trying to organise new Doctors, Opticians and the like, how on a good day I am more than capable, on a wobbly day, I can be a bit befuddled.   I know that I need to keep in check my awareness of making good decisions, because I know that at some time that I will become less able to take the right one.   I need help putting my new TV together (putting the stand together and setting it up), but am so aware that I must be careful about who I go to for help.  I do not have the strength to screw the stand together so a handy man should be able to do that, but who do I know who to choose?   These are real worries.

I have talked to my bank and thankfully they are fully ‘dementia aware trained’ and was given some excellent advice as to how to manage my money safely.   Thank you and well done NATWEST Bank!

I have painted my new (second hand) furniture with chalk paint and am well pleased with how they have been transformed.  My pictures are up, and almost all of the boxes are empty.

I have finally managed to settled down to begin reading again, my absolute pleasure!

I follow a blog by Pippa Kelly and she writes about “Dementia Friendly.  What does it really mean?”   (click the title which is the link to take you there) which is spot on.   I love how she questions what it means and then shows us by recounting it in action.

For us who are living with dementia, wearing a badge, proclaiming you are dementia friendly is not enough if you have no idea how to implement it.   It means, writing things down for us, giving us clear instructions, signposting clearly and  repeating everything.   I always comment that I may look as if I will remember or understand everything, but that is a mistake to make, because in reality I will not remember what you said, or your instructions.

I am resting up this weekend and doing some more reading as my head is not ready to take on the world quite yet.

Dementia: Changes afoot

I have been a bit absent of late.  Sorry for that.  Please forgive me if you have commented and I haven’t responded.   Major changes in my life right now.

I have just signed a tenancy agreement for a ‘compact but bijou’ flat in Newbury where I will be moving early next month.

Going it alone.

Have been stressed beyond reason at times, trying to sort out some new accommodation, but have just spent a week of total relaxtion with my daughter in London.  Ok I know that seems an incongruous with peace and calm but trust me it was.    I have made phone calls, sent emails then lost myself in mindless tv programmes on SKY to recover!

Moving to a new town where I know nobody, not even the town itself is quite daunting but is a new adventure for me.   I am moving into Sheltered Housing, to a Studio Flat in a building which is right on a river.  I can see the river from my window so it   is good.  Water is important to me and I happy to be near it.

Today I signed the tenancy agreement, caught a bus into the town and walked around.  Its nice.  I will like it here.  Then in a year’s time I will apply to transfer to another property in London near my daughter.    For now though an hour’s train journey is the closest I can get to be near her.   This is my future.

My sole furniture is:  one recliner chair and stool, an old pine bookcase, an old pine tv table both which I will upcycle with some nice paint.    I have no:  fridge, cooker, bed.    Who cares!

Sometimes things don’t work out the way you wish the would.   Being diagnosed with Alzheimer’s was a major trauma. and not just for me.   There is no point in being angry at people who you thought could cope.  People are individual, some can deal with things like this, some can’t.  No blame.

Now, I am about to try start again.

Next post I will talk about how I have found support and help from the services who promote their services.

What is Dementia Friends? – I attend a talk

I received an email which said one word “Interested?”.   It was information about a talk being given at the Derby Women’s Centre about Dementia Friends (find out more here) which is an initiative with the government and Alzheimer’s Society.

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Should I go?  Then I realised that although I knew about Dementia Friends I didn’t really know what to expect of them so decided this would be a good time to find out.

There were a good mix of people there, and I introduced myself to the speaker.   Sorry but I can’t remember her name – I am not good with names, the whole world should start wearing badges with their names on!

She was pleased that I was attending and asked if I minded talking about my own experiences, which of course I didn’t.

What an excellent morning it turned out to be.  The talk was tremendously appropriate and informative.  I can see why they are so important to be spread across Britain – everyone should have the opportunity in taking part in one.

A Dementia Friend is someone who has learnt what living with Dementia can mean to people.  Everybody has a different experience but it is important to treat everyone with the same positiveness of what they can do rather than why you think they can’t do.  Never assume someone has less capabilities than they may have.

I was asked lots of questions about how I live with it, and was able to answer about how I experience my own cognitive difficulties.   It was great to meet these people and learn about the Derby Women’s Centre.  I hope to pop in again sometime.

This was my first time in public talking to strangers about myself living with Alzheimer’s and I think they were surprised because the image is always someone who is elderly and in the later stages of the disease.

How did this make me feel being there?

It was great to learn more about what education is available to everyone regardless of who you are, where you work, age, race or religion.  Dementia has no cultural specifics, and how we educate the world should be in the same manner.   I felt like I could contribute something positive, and show that life for me good.  My glass is half full not half empty!   I felt the warmth and interest of the people there and they reached out to me.  Lovely 🙂