August 2014 – Handbagwarrior; verbal ramblings

Apathy and the constant challenge of challenging myself!

Some days need more of a challenge than others as I slip into an uncomfortable numbness.

The hot humid summers days have cooled. I welcome the coolness outside having hated the heat which exhausts me, but with the coolness and the humidity comes the pains in my joints especially my shoulders right now, but ok I can take a paracetamol, after all you can’t have everything.

Its Monday morning and I get out my medicines to fill my weekly box and blow me, guess what, I have forgotten that I needed to collect the remainder of my Rivastigmene from the chemists! Good grief, have I not just gone through this a short time ago. So, not only did I forget to order my prescription, which came in two parts, I have forgotten to pick up the remainder of it , how could I not have remembered that one? I was going to write ‘what is wrong with me’ but thats laughable.

The past few days I have been feeling apathy and something I can’t quite put my finger on and feel upset with myself for not overcoming it.

Maybe I am feeling apathy because I have allowed myself to sink into a routine that is so comfortable it is not challenging? Maybe, my brain is just having a rest, maybe its part of Alzheimer’s depression (I don’t remotely feel depressed or less than happy). I have somehow not phoned my family, friends, or kept up to date with anyone. I realise that for me sometimes it is a real struggle to do these things, how do you explain that I can get ‘scared’ to make that call, or chat. I don’t understand it myself only that once I do it, all is well, and I think what was all the fuss about.

One thing I know, keeping positive is a challenge on a daily basis, and somedays I don’t manage so well.

Yesterday whilst the weather was on the edge of turning into rain, I took my camera out to take some photo’s and to check what the farmers had done to the field next to us. For the past few days our eyes have been watering and we are told that they have been spraying lime on the fields and unfortunately the wind has been in our direction. Having listened to the tractors early in the mornings I thought they had been ploughed but see that they are working through the patchwork around the marina spraying.

Last year the fields were planted with potatoes, this year oilseed rape, I wonder what will be in there next year?

Caring for people living with Dementia across the world

I have to share this with you….

There is a lot work being done for people living with dementia throughout the world which needs to be shouted about as WONDERFUL!

There is a blog I follow which is inspirational at least, that I would love others to look at, to read and to understand how truly wonderfully caring people can be.

The website is ADN – Alzheimers Dementia Namibia – please take time to read through the posts especially this one Ndjinaa

I am in awe of these people and think this site is so important because it shows the breadth and depth of care around the world.

Alzhiemer’s and the lack of memory to order prescription medication!

There I am carrying on as normal. la la la la la ……and then get up on Monday morning and find I have 3 tablets left of my Alzheimer’s medication!

On Monday’s I usually get all my medication drugs out with my weekly drugs box and methodically fill the day boxes, morning and evening with the medication that I take along with my vitamins C, D, and E.

I find it easier to to sort out my medication on a Monday morning because it feels like the beginning of my week. No longer working, each day is the same so often I have no idea what the day is. Is that a problem or a symptom of my Alzheimer’s, no idea but I reckon it is the same for many who have retired. When you don’t work the weekend is much the same as the weekdays and it soon merges into weekdays other.

So come Monday morning I know that my weekly routine is to get all the drugs and vitamins I take and on a tray and fill my daily boxes, but found to my horror that I had forgotten to order a prescription and had only 3 tablets left.

Yeah yeah yeah I hear you say what’s the big deal. This is the medication I take for my Alzheimer’s and although it will not ‘cure’ it, it prolongs its affect on me (hopefully). It says you should not miss a dose…actually why would I want to miss a dose? No, I want to keep taking it so as I can prolong my demise as long as possible.

Forgetting to take my medication is a factor of this disease! Forgetting daily routines is a symptom of this disease.

I asked for an urgent prescription, and collected it this afternoon. I asked about having blister packs being made up for my two prescription medication to make it easier for me to remember, but somehow the pharmacist failed to understand. “Yes but if you put it in daily boxes, it is easy to remember to take it?

I don’t know; she is being rational but it is hard for me to say: ‘look, sometimes I find it hard to remember to take them, maybe if they are in a blister pack, which is bigger than my small weekly drugs boxes would help me remember’.

‘There are apps you can download on your phone’, the pharmacist said ‘to remind you’ My immediate thought was a phone noise irritating the hell out of me, but not necessarily making me get up and immediately take my medication.

I might pursue blister packs because it means I will not run out of my medication because I only have to remember to order them once.

Goodness, it should never be hard to remember to take/order medication but reality is that it is for someone like me.

I have been nominated for an award – Thank you :)

I am thrilled that Alice in Memoryland has nominated me for the “Very Inspiring Blogger Award.” Thank you Alice.

Very Inspiring Blogger Award

Having Alzheimer’s disease tends to lead me to seek out people who write about it, those living with it, and carers in all forms. Alice in Memoryland blog is one I can identify with because there is an honesty about her experiences with her husband diagnosed with Mild Cognitive Impairment (MCI). I get a lot from reading her frustration, fear of the future, irritation, and obvious loving care because it gives me an understanding how my husband may be feeling at times. I also love the way she maintains her own identity writing reviews for a publishing trade magazine. She is new to blogging but has captured the essence of reaching out to people.

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I am not always good at understanding instructions these days, but with this award comes a few rules so here goes and hope I get it right!

This is an award that we pay forward — honouring the bloggers whom we follow and who inspire us. Here are the rules:

Thank and link to the amazing person who nominated you.
List the rules and display the award.
Share seven facts about yourself.
Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
 Proudly display the award logo on your blog and follow the blogger who nominated you.

So here are the seven facts about myself (I chose random facts because I like to think that they are much more interesting)

one – I live on a narrowboat with my husband and 2 cats Daisy (12yo) and Ella (11yo) on the Trent & Mersey Canal in Staffordshire, UK

two – I met my husband on a marina in 2010 and we were married in 2011.

three – I grew up on the edge of the New Forest in the South of England and would ride my bike out to the forest to play.

four – I love music and have eclectic tastes and find music is important to me (sadly my husband and I do not share the same music tastes, so I listen with my iPod :S)

five – I was always writing letters a few years ago to try to get things changed: I managed to get circuses with live exotic animals banned from the small town where I lived. (I think it is cruelty to transport elephants etc in lorries around towns). I also used to write to the government on a regular basis if I disagreed with something in the current news. One day I heard a small ‘quiet’ announcement on radio that Margaret Thatcher had allowed Pol Pot to come to Britain for medical treatment and I was outraged and immediately wrote a letter saying she had no place in supporting a dictator this way. They next day the BBC announced the government had received overnight 12,000 letters. I think I might be an armchair rebel!

six – At 20 I broke into the famous fenced off monument Stonehenge to watch the sun rise – got caught obviously!

seven – I have been on TV twice – nothing gripping though. Channel 4’s Big Breakfast who all piled into my house at about 7.30am, and a documentary about women returning to work, I was wearing a black knitted dress and bright pink tights – what was I thinking!

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I have several posts I would like to nominate for this award so here goes: Truthful Loving Kindness as Dementia Patient in her blog http://truthfulkindness.com. Truthful has such an inspirational blog, she writes about her life, her dementia and her writing is beautiful and informative. She is honest and tries to educate as many as she can about living with dementia. Not the end stage as is normally thought of by those without knowledge of Alzheimer’s and Dementia. She is kindness herself, intelligent and brings such a wonderful light into the lives of other people living with Dementia with her positiveness.

The next blog I love is http://nursebitterpill.com it is written by Amy who is a nurse. She has worked the night shift on an Alzheimer’s & Dementia unit and is now one of the directors of an assisted living community dedicated to improving the care for seniors with Dementia and Alzheimer’s Disease. (Taken from her ‘who is’ page but I cannot do justice to it – you should read it). Amy show us the small pleasures that she gains from the love of the people she has worked with. She brings a light hearted look into the often confused minds of those she has cared for. I think Amy is a very special person.

I am in awe of this next site because it is a true labour of love and dedication. http://pacificparatrooper.wordpress.com. It is a site by gpcox about Pacific War Era information, which I have no knowledge of but am fascinated the facts and dedications writing the most readable style. Everything about this site inspires me, here is a man who honour those whose lives were lost, who gives us the most detailed information about the history, it is like I am sitting in a big old leather chair with gpcox, listening as he tells the story that needs to be told over and over.

I also wish to nominate this award to JacquelynCambell who writes http://quiltofmissingmemories.wordpress.com. I truly find inspiration in her photographs and poems/haikus. Her photographs and words speak to me as I peek into bits of her life with them and they brighten my day. Jacquelyn has had Alzheimer’s in her life with both her parents and her husband who sadly passed away earlier this year.

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So thank you for this award it is a proud moment for me 🙂 Gill

I have just finished reading:

THE POPPY FACTORY by Liz Trenow

Take a look at my review (link above my book reviews)

This is a must read book!!

Hearing and the changes I have noticed with Alzheimer’s

Today I had an appointment at Boots Opticians and hearing shop. I wanted to have my hearing checked because I had an idea that my hearing was a little worse than about 6 years ago when my hearing was checked.

Turns out that it is mainly age related, my left ear having less sound range than the right, so no great problems, not enough for intervention with an aid of any sort.

Interestingly she talked about the way that Alzheimer’s affects the way that hearing is processed. Imagine a room full of people talking, along with other sounds, and trying to focus on only one person in the middle of the room talking to you…very difficult. That can be what it is like for someone with Alzheimer’s trying to hear normally. I do experience this even in a quiet room, I am spoken to but I might be on the internet, or reading and somehow do not hear what has been said. So I have to say ‘sorry what did you say?’ over and over. Irritating or what!

So my focus of attention needs to be on only one thing to process what is being said. This is important for me and others around me to understand because when I am thinking; I have not heard, it may be that I have not processed what has been said.

She said I need to use change of behaviour to help any hearing problems, such as sitting with my back towards a wall in a restaurant so that I have no noise behind me. Facing people straight on when we talk so that my focus is on their voice – easier said than done when I have difficulties in maintaining eye contact!

All in all I am pleased that my hearing has not got worse, and interested to learn how my Alzheimer’s has an impact on how I process sound.