Dementia: My alzheimer’s progress – no progression!

Progress? No progress – Yay!!!

I had an appointment with my new consultant since moving here.

She confirmed that she had read all of my background notes, which was helpful, so we chatted and then started on the testing.

Shapes, clock, sentences, instructions – no problem.   Remembered three out of five words which was okay.  Had trouble counting backwards from 100 in 7’s, got two wrong and she asked me if I wanted to try again, but it was not a day where my mathematical abilities was going to get any better so I said no!   I have always had problems with numbers, they are just squiggles on a page to me.  I never see patterns or logical progressions, I guess it might be dyscalculia.   I have to concentrate on working out money these days in shops but it is not too bad.

We talked about my confusion with what day it is on a regular basis.  So many people say to me, ‘Oh yes I am like that all the time’, and it is difficult for them to understand what it means when you have dementia.

So, what is the confusion like?   I have a calendar that I write on (most!) all of the time, appointments, visiting Dad, visiting my daughter etc.  I go to Dad’s and a few days later come back, so say I go on a Sunday I return on Wednesday or Thursday.  He wants me to stay so I return on Thursday.  Simple?  Well not quite; my brother and sister in law may come to lunch on Sunday, so I know its Sunday.   Next day I get up and struggle to know whether it is Monday or Tuesday because I can’t remember if we all had dinner together yesterday or the day before.  My anchor has slipped and so I enter a time warp.

We anchor ourselves by what we do on certain days; what we see on television, where we go and who we see, but what if your memory is such that yesterday becomes forgotten?   You lose your anchor immediately.  Most people who say they cannot remember what day it is, usually knows what they did in the previous days so it is really just a confusing blip and they could work it out quite well.   Correct me if you think that’s incorrect.

For me I get very confused/forget about what I did the day/s before so I am immediately lost in a time warp of my own creation.  Does it help to look at a calendar, not really unless I have remembered to cross off the days (which I rarely do).  I could look at my mobile phone and see the date, yes that’s it, then will forget later on that day again!  Sometimes I just cannot hold a memory in my head for love nor money.  So this morning I know it is Sunday, but later I may wonder……

If I had someone living with me they could remind me of what I/we did yesterday and last week and tell me the day, alone I have to try and put other things in place which of course I can only rely on myself to remember to do.81PIIV9RCoL._SL1500_

1.  I have now bought a white board with days of the week on which is stuck on my wall near the chair that I sit in (similar to this)  – I can write down my week, cross off the days (if I remember) and see at a glance whether I have any appointments and see if it helps me know what day it is.

2.  One aid I could get is a clock with the day and date on – they are expensive but which is something I will aim to do

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The good news is that she said I had not progressed any further since my diagnosis so I very was pleased with that.

Maintaining the level I am at is important to me because it means I can get more things in place whilst I still can.

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Dementia: Little things Exposed

It’s raining today quite heavily.  I was reminded that I no longer had transport by a car, in fact my transport arrangement has changed beyond recognition.  Before I left, we would jump into the car in the rain and it was not an issue.

When I was with my husband we got in the car and went places. Shopping:  jump in the car and travel to whichever shop or shopping centre we felt like at that time.

Now that I have chosen to live on my own my independence is different.  I am no longer able to drive because of my Alzheimer’s and lack of attention.  So I am now reduced back to public transport, buses, trains and walking.

Walking has to be measured.  Is it a good day where my pain is bearable?  Is the distance acheivable.  Is there somewhere that I can sit down, have a drink and rest, before continuing.

Buses: I read the timetables, can I get from A to B by bus?  Is my journey achievable?

Trains:  Can I afford the ticket?  How many times do I have to change trains – too many and it is too much for me to cope with.  I need to write the journey down step by step, time by time, any diversion needs to be adjusted to, and workable.

Okay I know this sound plan-able,  organised, sorted..but in reality it is done in panic and fear.

What if….?  I can’t find the platform, get on the wrong train, not get off at the right station because my attention is on something else and I miss it?

These are real.

So now, I am unable to go places on a whim or places that are not on a bus or train route.  I am one of the millions who are stuck within the boundaries on the limit public transport around me.

I miss my car.  I miss getting in and driving to places…to anywhere.

Where am I going with this?   I am living alone, I have no family or friends nearby so I guess I am reasonable isolated in my own world.

The other day I woke up and was happily going about my business when I had a phone call from my sister-in-law.  What transpired is that I was very confused with what day it was, and how I managed to lose track of days.  This wasn’t just not knowing what day it was but the confusion of not knowing or even thinking about how I could check it out.

So many people say to me that ‘I do that all the time”  maybe even you are thinking it as you are reading this.  But, until you ‘wake up’ in the middle of the day and not knowing what the day is, and are so confused that you are unable to work it out, then you will know how upsetting that is.

I realised that I need to put in place more strategies to help me live independently.  I may need some help to make sure I can sort out my bills and I do not sort them out timely enough.    I have bought a cork-board to pin paperwork to that I need to sort out.  When I see my new Consultant at the Memory Clinic in a few weeks I will ask about how I can find help for say an hour a week.

Living alone has exposed some of the difficulties I experience on a day to day basis.   Living with another person, even if they don’t want to they can soften the changes.   Now the little things are showing up, and I have to work extra hard to cope on a daily basis.  Still I am doing okay.

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?