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.

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.

Living with Early Onset Alzheimer’s Disease (EOAD) my thoughts on the word Support

I though about the word ‘support’ and wondered what did it mean, or rather what did it mean for me?  To start with I began to think of what the actual meaning of the word ‘support’ is.  From the Macbook dictionary this is what it says

support

verb [ with obj. ]

1 bear all or part of the weight of; hold up: the dome was supported by a hundred white columns.

2 give assistance to, especially financially: the government gives £2,500 million a year to support the voluntary sector.

• provide with a home and the necessities of life: my main concern was to support my family.

• give approval, comfort, or encouragement to: the proposal was supported by many delegates

be actively interested in and concerned for the success of(a particular sports team). fans should always support their      team fully, no matter what.  [Me:  Activities I do with regard to bringing awareness for EOAD]

• (as adj.supporting) (of an actor or role) of secondary importance to the leading roles in a play or film. the production’s greatest successes are in the main supporting roles.

• (of a pop or rock group or performer) function as a secondary act to (another) at a concert.

3 suggest the truth of; corroborate: the studies support our findings

4 produce enough food and water for; be capable of sustaining: the land had lost its capacity to support life.

5 endure; tolerate: at work during the day I could support the grief. [Me: Understand that I do or say things that may driven by this disease and not under my control]

6 (of a computer or operating system) allow the use or operation of (a program, language, or device): the new versions do not support the graphical user interface standard.

     noun

1 a thing that bears the weight of something or keeps it upright: the best support for a camera is a tripod.

• [ mass noun ] the action of supporting something or someone or the state of being supported: she clutched the sideboard for support.

2 [ mass noun ] material assistance: the bank provided unstinting financial support | air operations in support of British forces

• approval, encouragement, or comfort: the paper printed many letters in support of the government | she’s been through a bad time and needs our support. [Me:encourage me in my endeavours]

• technical help given to the user of a computer or other product.

3 [ mass noun ] evidence that serves to corroborate something: the study provides support for both theories.

4 a secondary act at a pop or rock concert: [ as modifier ] : a support band.

DERIVATIVES

supportability noun,

supportable adjective

supportless adjective

     ORIGIN Middle English (originally in the sense ‘tolerate’): from Old French supporter, from Latin supportare, from sub–    ‘from below’ + portare ‘carry’.

Well, from this it appears that it has many meanings whether it is used as a noun or a verb but what part of this is relevant to what I mean?  I can take bits from it and make my own meaning, I have highlighted what I think is relevant to me.  The origin of the words seems the best of all – ‘to carry from below’.

So now I have set out what it means to me, which part my idea of support is relevant to writing these posts?

……..Right now I have forgotten what was in my head that I wanted to write about! Oh yes…

Writing is supportive to me because it is the cathartic emptying of my thoughts and the discarding of them.  Words, sentences, pages often spin around my mind in a confusing whirlwind and this jumble of words makes no sense to me until I have ‘emptied’ them out on to a page.  Once I have done that they are gone although they are replaced with the next lot of thoughts.  My head is NEVER empty, foggy yes, but still a scrapyard of thoughts, or worms as I call them.

DM flyerIt is important for me to separate out what support means to me and I think know that is about ‘understanding’ for me.   Another person living with Alzheimer’s/Dementia can understand all the little bits of brokenness that others may not see and although you ignore them, they silently eat away at you nevertheless.  I am so thankful that the broken bits are small still and I can continue to live relatively normally.   But, support comes from simply chatting to another person with dementia and knowing you are not alone.  That type of support is a two way act; talking about how you overcome daily things, such as how to remember to take medication etc, you get different ideas and they get different ideas.  Feeling alone is another part of dementia that  can be there and makes no sense at all.

More and more the meaning of words becomes significant to me because the semantics of a sentence can throw me totally – what did they mean by that?  Was that meant literal or metaphysically?   That is where my comprehension is increasingly impaired as I am struggling to discern the difference between the two.  When is a joke not a joke?  I don’t always know any more.  I am finding it important to have things said to me, or explained to me in simple words with a full explanation as I cannot always guess the other bits.

One of the reasons that I ‘catalogue’ anything new publicly is to hopefully educate as many as I can about the world of living with Alzheimer’s and Dementia.  Maybe I feel that I am on some kind of mission, if so the very act of writing this is supporting me by getting rid of the worms in my head  🙂    I read somewhere that the need to write can be part of a symptom of damage to the frontal lobe which would make sense to me as I have an underdeveloped frontal lobe of my brain.

The second reason is that I am totally fascinated by the psychology of the disease.  I can’t recall any details of studying dementia at University as part of my Psychology degree, all I can remember is studying aphasia (Wikipedia – Aphasia  is a disturbance of the comprehension and expression of language caused by dysfunction in the brain).  I remember sitting in the medical library at Leicester Royal Infirmary and reading up on all kinds of cognitive disfunctions and thinking how lucky I was to be able to access these wonderfully detailed books.   I can recall some of my knowledge of cognitive functions and I find I can apply it to my own cognitive impairments.  Should I be so fascinated by my own slow decline?  Hell yes, whilst I can, I will.

Punctuation malfunction in my brain and my increasing fear of commas.

There are days when I notice my Alzheimer’s seems to be a bit worse and try to remember to record it for my Alzheimer’s Journey.

So, I will get an apology out the way first – sorry if my grammar and punctuation is all over the place but today my brain cells have gone on strike.

Cats woke us up extremely early at 6.30am – little darlings (smiling through clenched teeth :))) ), and I settled in my chair with my coffee to start reading a new book.

Right from the start I found I couldn’t understand the sentence because those pesky little tadpole commas seemed to be in the wrong place.  I read the first paragraph again slowly but it really did not make much difference.  As you know a comma in the incorrect place can put a totally different meaning on sentence but today for me, every comma seems incorrect.

As I write now I am having great difficulty in knowing if I am putting commas in the correct place and it has suddenly become a real issue.  I have no idea why I am stressing about it so much because if I stop maybe the fear of commas will just fade away again!

I am also misspelling words more frequently.  Being a touch typist I have no mental idea where my fingers are on the keyboard; I think and they transfer my thoughts by themselves.  If I had to think about where the keys are or how to form words I would fail to write anything.   Lately what I think is not what my fingers are typing, how can that be?  It is as if the diseased part of my brain has taken on an identity of its own, one which may be a little dyslexic and mischievous.  I can see words forming on the page that I have not even thought about and not even Freudian slips, but words that are incongruous.

I think sometimes that my macbook changes the words as I type and I fail to notice it which leads me on to how I read.

I am finding it really hard to read what I have written and with short term memory problems I usually have no idea what I have written minutes after writing it, so if it gets mixed up on the page I wouldn’t necessarily remember what I was trying to say.  When I am reading it back I am constantly questioning my grammar and punctuation but often than not I have no idea any more if it is correct.

I gave up trying to read my book earlier and thought I would surf the net.  I will read my own blogs from time to time because I don’t always remember what I have written and have a need to check that I have not made any major gaffs.  So, I looked at my latest book review – Broken Monsters, and was horrified to see that it was all over the place with spelling mistakes.  I am sure I proof read it before I posted it but guess now that I cannot trust my own ability to do so, which is why I  go back and re-read it the day after.

It makes me feel so embarrassed to make these mistakes for all to see because it somehow makes me less literate than I used to be (was I ever that literate!).

Dementia is such an insidious disease which is less understood than it should be.   As you can see I am not in the middle or later stages, but at an early stage so I am very aware of these small changes which I cannot do anything about.

Do you judge a blog by its grammar and punctuation?   I used to but now I understand that it is what people are struggling to say that is more important, but are people less likely to read a blog that has grammatical errors in even if the content is interesting?

 

“I feel like something at the bottom of a woman’s handbag”

Saturday – 28th June 2014 – Alzheimer’s Meeting

I was invited to a meeting to form a pilot scheme for younger people with Alzheimer’s and Dementia. It was quite a way to drive and we got to a place which was in fact in a building in a Chemical Company which supports the charity Alzheimer’s Organisation; their conservatory which is on the side of a very nice cafe/restaurant.

There were workers from the Alzheimer’s Organisation from three different surrounding areas in county and I got to talk to two of them. The are all enthusiastic and clearly caring people.  People arrived gradually until there was a good roomful of people living with dementia and their partners and carers. I initially talked to two of the staff full of enthusiasm and I passed a couple of flyers for Dementia Mentors website which they said they would look at. As others arrived they seemed to know each other I think from another group they attend. The conservatory had tables and chairs set out in a cafe setting and people came in and sat randomly around the room or in groups of friends. Because of how we were all sitting facing some with our backs towards others it was not conducive to chatting and getting to know anyone you didn’t know, which for us was everybody. No sooner everyone had arrived, we were told to split up into three groups and talk about what sort of group we wanted. The friends stayed where they were, others gravitated towards the far side of the room and hubby and I were asked if we would join the table behind us with just two people on because the guy had mobility problems. The guy I shall call Sid clearly had mid stage dementia and did not speak or appear to have awareness of what was going on. His partner on the other hand did not stop talking. We had a worker with us who was going to facilitate this discussion between the four of us.   (All names have been changed to protect peoples identity).

Phil the worker was enthusiastic and started throwing some ideas about for us to talk about and ‘Sally’, Sid’s partner started to talk about what she wanted from the group. I don’t want to see leaflets on tables, she said, I don’t want to hear anything about dementia, I want a social group where we can go out and enjoy ourselves. Right, that is perfectly clear. I am tired, she explained, of everyone talking about dementia, I want somewhere where that is not about illness at all.  (Actually Sally, I think you need a support group for carers and some respite care for Sid, I thought at the time).

I had up until this point given some ideas, discussing a newsletter, learning new things in their new life with dementia, such as photography, cooking, creative writing mini courses, days out doing group photography, walking etc. The more Sally talked the more puzzled I began feeling. Hang on, I thought we were here to talk about a group for people with dementia, at least that is what the conversation I had with the ALZ worker I had met after being diagnosed who said there was no support groups suitable for me. I could not assume that Sally was Sid’s carer and I had to know, so I asked her if she had dementia? No, she answered, I am with Sid. I had this sudden realisation that no-one had asked Sid what he wanted, so I asked him. With his progressive dementia he couldn’t really give an answer, he goes to another day care place and does a lot of memory activities with them, and seem to be confused about where he was as he was talking. He sat not speaking having difficulty holding his mug of tea, Sally telling him to put it on the table before he spilt it down himself. I could see my hubby watching and wondered what he was thinking. Sid did not appear to want to put the mug down, or do as he was being told. Sally was off again saying the things she wanted to do, and I spoke to Sid. ‘Only people with people who have dementia can understand what its like to live with it’ I said to him, and he nodded in agreement. I asked him about the day care he goes to and he tried to talk to me about it. He then said, probably the most important thing that was said in that room “I feel like I am something at the bottom of a woman’s handbag”. Do you mean being here I asked him pointing around, ‘No’ he answered. Ahh you mean all the time I put back to him understanding how he was feeling.

The more I listened to Phil and Sally talking, and hearing the animated voices around the room the more I realised my expectations were far too high and I was not enjoying the experience.

The discussion was over, time was up and it was time to go! Before I left I briefly spoke to a worker and said that I thought it was going to be about people living with dementia wanted, and was a little disappointed to hear so many carers saying what they wanted. “I guess it is about both” was the answer.

Okay, how this meeting made me feel:

  • Angry
  • Silenced
  • Invisible
  • Like being treated like a ‘patient’
  • Cheated
  • UPSET

I thought this was going to be about what we, the people with dementia wanted out of a group for support and social activities that we could do with others, and that includes partners and carers who understand that sometimes we say the wrong thing, behave in a way that may not be quite right.  It is right the partners should be there, but let all those who live with dementia, have their own voice, their own control, and their own place to keep their minds active, not something that is organised by everyone else.

How many websites, groups, and advise site both professional and amateur are there for carers. How many forums are for carers?  Many.  Why is this, it is because what do you think when you hear someone has dementia?  You think of an elderly person towards the end stage of the disease, not always knowing who family is, someone who has lost the understanding of what is happening around them, someone who may be shouting out and being difficult and finding it hard to communicate.

Well that is at the end stage, not the beginning, how do you know that you do not already have some kind of Alzheimer’s in the making? Give it a few years and when you know something is ‘not quite right’, something simple such as your visual perception not working right, not keeping up with work, you will be wondering whats wrong. If.. if that happens and you are in your 40’s, 50’s and 60’s you will want people to treat you as they would want treating themselves, not to talk as if you no longer have a voice or part to play in the control over your own life.   Memory Loss is not loss of intelligence, get it?

I just want to finish saying:

I AM NOT INVISIBLE, I AM INTELLIGENT, I CAN STILL TALK TO YOU, UNDERSTAND YOU AND HAVE A DISCUSSION ABOUT WHAT IS GOING ON IN THE WORLD.

Please don’t think that by helping our husbands or partners that it equates to giving support to me.

Thank you for listening if you got to the end of this.

Dementia and my Mother

I entered the ward and looked around the four beds searching for my mother.  I saw an old white haired lady lying in a bed moving her head and shouting out incoherently and was momentarily horrified to see that this may be my mother.   I turned around for reassurance from my Dad and husband but somehow I was alone, they had stopped by the nurses station to check it was alright to come in.  Retreating I then followed my Dad back in seeing which of the old women he would go to, the silent ones or the person I believed was my mother, I was not wrong.

My mother has vascular dementia and had been in hospital a week following a deterioration in her physical health, however I could clearly see that her mental health had declined also.

‘Hello, hello’ she is shouting trying to get anyones attention.   ‘Iris’ my Dad says, and she recognises him immediately.  I sit the other side of the bed and tell her I am Gill her daughter.   She looks vacantly at me and then at my Dad who tells her again that I have come to visit her.  ‘Our Gill’, she says with some recognition.

This woman is not the woman I last saw, she had dementia then, but still looked like herself, now she was shrunken, her dead eyes darting everywhere but not on me.  Her hair not combed in the way she like it.  In her hands she holds a small soft toy; a reindeer which the nurses have given her to hold.   She feels safer holding someones hand which she grips with a vice like grip surprising for someone seemingly so frail.

My feelings are so mixed up, this is the woman who damaged my brain punishing me with a ‘smack’ to my head with daily regularity or more.  She forgot she did not like me once she developed dementia and now she is towards the end of her life.  She refuses to have her false teeth in and is incoherent but continues to talk, nobody understanding all the words.  I watch my Father sitting with his hand gripped by her, his head tilted trying to hear with his hearing aid what she is saying.  He fails and just says ‘I’m here Iris, Okay’, then he falls asleep.  Lymphatic Leukaemia makes him tired, the stress of seeing my mother like this makes him weary.

I am listening hard trying to make out vague words as if they are important, as if they are the words I will remember when she has died because this is the first time I have heard her speak face to face in over a year.

She has a pacemaker and a chest infection, her kidneys are not working properly.  Her dementia seems to have got more of a grip on her and she is on oxygen.

I sit.  I touch her.  I have not touched my mother in my life before like this.  I stroke her hand but feel unattached to her.  She looks at me with dull eyes and I don’t know whether she is seeing me or not, or what she thinks if she does see me.  It is too late to talk to her of what she did to me, of how we are, or what she feels about me.  Although somehow I don’t think I ever would.

The nurses come and talk to her, they are kind, they are sensitive, they do not know her like I know her.  But her viciousness has gone…..I see her trying to speak, shouting at the nurse standing at the end of the bed, she is kicking her feet; up and down; I want your attention but don’t know the words to say it – She wants to go home.  That is all that she is interested in, going home.

She knows me and then when the nurses ask who I am she says she doesn’t know who I am.  My father explains that she never sees me very often.  I now have feelings of guilt, but I could not bring myself to visit someone regularly who hates me so vehemently.  I have kept in contact by phone which has maintained my mental safety having spent three years in counselling to overcome the damage she did.

I am sitting there, I am gentle with her, she does not deserve this, but I need this to be like a daughter that has always been part of a loving family.

My Dad on the Sunday we are leaving is ‘off’ with me, I am not sure why.  Maybe this is the old way that they both treated me.  My husband comes down and joins us, there is a conversation which is not conducive to me being a great person.  I ignore it because I know silence is the most powerful tool.  Then I am asked a sexist question so I make it very clear what I think; ‘us women are stupid aren’t we’ I say.  Nothing more, I have made my point that I was listening and that conversation is over.  The subject is changed.

This house is where I grew up being put down emotionally and psychologically.  You are useless, you are stupid, you are a whore.  I was thirteen when my mother told me I was whore.  What is that I thought, I had no idea then.   I left home to escape, to grow into someone who could believe in themselves.  It took me forty years and three years of counselling to get there.

Now I was sitting at the bedside of my Mother, her gripping my hand telling me and all the nurses she loved them.  The pain cuts like a knife.  I have never heard her use the word ‘love’, apart from telling me nobody would ever love me.  Her words feel as empty now as they have always been.

Back at my fathers house ( my old home)  I washed, cleaned, ironed, and tried to make things better before I left to go home.  As we are leaving my Dad says to me ‘I can’t see that she is ever coming back to this house because I can’t look after her’.  There is a sadness when he says this, adding if she ever comes out of hospital.

Family is extraordinarily painful when we have alway been fractured.