Dementia: Always explaining myself

I went to see a doctor the other day, because I have a long standing problem with my knees and they hurt.   I have not been able to use steps/stairs for a couple of years now.

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So, I explain that I have a congenital deformity in my knees and they are so bad now I can’t climb stairs etc…   Doctor asks me to explain what ‘congenital deformity’ I have.  “The knobs on the top of my tibia are too narrow for my patella to move over up and down without rubbing the bone, and my patella sits too high”  I answer then telling him that I had an operation on one knee in my 20’s giving the correct term –  “A Tibial Tubercle Transfer”.   He murmurs something about my patella, which I don’t quite catch so can’t answer him.

His next question is:  “Why do you have your medication in a nomad pack?” (see my previous post on this subject)  I suddenly feel like I am in a parallel universe in a different consultation.  What?

Me:  “I have Alzheimer’s”.    Dr: “You have it delivered weekly?”  Me: no I collect it monthly.  Dr:  4 packs at a time?  Me: Yes!?!?  Another Doctor from this surgery phoned the chemist and arranged that I could pick it up once a month.  I am not housebound I cannot change my life to collect it every week.

Then I find I am justifying myself by telling him that my Alzheimer’s is at the very early stages.  I say this twice.   I swear if I find he has stopped this arrangement to give me a  4 weeks of nomads packs of medication I will scream….. Arrrrrrggggghhhhhhhhhhhhhhh!   and breathe…

Knees, focus on my knees!

And yesterday I go for some X-rays on both my knees, some standing up, then they tell me to go over to the bed.     I don’t understand what they mean?  So they repeat ‘go over to the bed‘.    This is where my dementia kicks in, go over to the bed, then what?  Do they mean me to get on the bed, sit on the bed, lie on the bed?  I am tired of my brain not working properly at times.    It is frustrating not being able to understand the meaning of simple sentences at times.  It makes me feel stupid, which of course I know I’m not but other people don’t know that when I am not responding.   The X-ray technicians would not know I have Alzheimer’s which makes me even more embarrassed that I stood there like a dummy whilst trying to work out what to do.

Hey ho.    Onwards and upwards.  🙂

 

 

 

“Nothing about us without us” 

Why is this a hard concept to get.   There are some truly lovely, and wonderful people wanting to offer people living with dementia activities in the community.

My word of advice as someone living with dementia:

  1. Know your community
  2. Make sure you do not do anything without having someone living with dementia to consult with.  If these are the people you are doing things for, then ask them first.

What if you have no one to ask?   What!   Why on earth are you starting things for people without reaching out to them first?   Do you see what I am saying here?  If you have no one to ask then you don’t know who is in your community who need your help in accessing activities or support.

Does your GP Surgery/Memory Clinic signpost your activity to people who are newly diagnosed living with a memory issue or dementia?   These are the people who need peer support and acitivities.  First build relationships with your medical centres so that they can tell someone newly diagnosed there is peer support for them to access. Otherwise they can feel that life is over, that there is nothing for them to do other than let their families take over and sit and make the best out of nothing.

Here in the North East of England, DEMENTIA is a word that no-one will speak.  It appears to be a word to be ashamed of.  Families hide it away within themselves, and will only speak it when talking about having had a member who had ‘it’ – Said with such sadness and dread that requires the voice to lower a little.

I am trying, so so hard to change this in my local town.  I am now having to tell people if you want to reach people living with an early diagnosis then never, have the word ‘dementia‘ prominently in your name or description.  Instead focus on the word ‘memory’ difficulties with the additive of dementia hidden at the end.   Do I think this is a bad thing? No certainly not especially in an area that is not yet open to being open about dementia.   Who cares what it is called as long as people can access it whilst attitudes change slowly.

At the moment I feel alone in being involved in starting support/activity groups up because I am yet to be put in touch with others like me living with this disease.  They are around because I am told they are…..and that is where it ends…  If it were not for the few wonderful people who are passionate about changing our town then I think it would be hopeless.

It’s funny because you can see the other small towns where they have groups for people with dementia that is not focussed on early onset/diagnoses, because their posters and wording is very professional like, and ‘correct’.   It is all about them doing things for us, and whilst that is fantastic, it is all encompassing and not for the likes of younger diagnosed people such as myself.

I was part of a conversation the other day that was being had about groups in my Town, and someone saying “what we need is a minibus to take people to other nearby towns to join in activities”.       NO, what we need is for someone to ask ME, and others like me in my town what WE want.   Sorry, did I shout there.   Anyway, there will be a group/meeting/for people who are living with diagnosis of memory difficulties, MCI, and dementia to see if we can first reach people who are around locally.  Small steps.

 

 

Closing a chapter…opening a door

You can’t have failed to have noticed that I have made some major changes to my website and myself.  I feel I am closing a chapter in my life.

Firstly, I have am in transition from being married to being single.  It is not appropriate for me to talk about that, only how I am redefining my life now.  Hence the name change, reverting to my maiden name.  ‘Gill Taylor Muses’  also introduced a new chapter in my life for me.

When I was given the diagnosis of ‘possible Alzheimer’s’ my life was turned inside out, upside down.  It felt like there was nothing left for me to plan for, to look forward to, that my mental demise would quickly overtake my life.  So I began making some wonderful friends across the world who also had been given dementia diagnoses.  Instead of just having support, they have inspired me, they have all worked tirelessly to show how anyone can live well with dementia, that education is needed world wide to enable everyone who has dementia can lead a better and indeed in many cases a productive life before the end stages.  They work to show people how to understand how dementia affects people, and how to communicate effectively.  I often hear people recalling their experiences of trying to talk or understand someone in the later stages of dementia who is seemingly talking nonsense and leaving everyone confused and frustrated.  I have learnt, however, how effective understanding and communication can make the experience  better for both sides.   It is simple really, all you have to do is learn about dementia and how it affects the brain, nothing technical just relating the personality of the person with dementia with their confusion.   Random sentences such as ‘I want to go home’ can simply mean “I am confused and am not sure what is happening, please reassure me”.    So a simple reassurance that a familiar person or place is around them, telling them you are they and everything is okay can help.    No need to talk about, where home is or isn’t.   That is a loose example that may not fit every situation but knowing the who the person was can help in how you talk to them.  My own mother never lost her sense of humour with her vascular dementia right up till the end.  So to bring humour into her life when we were talking was a really important way to make her feel safe and comfortable.

I digress.  I got out my diagnosis letters and re-read them.   At the time when you receive these letters all you can see is the word ALZHEIMER’S or DEMENTIA jumping out at you.   I was looking at it, and thinking about all the questions that were asked over various appointments and tests. Q: “How long have you notice problems with your memory” – this is a simple question isn’t it.  Answer:  Always.   Q: “Yes but more recently how long has it been getting worse”.  A: Well, I have noticed it more in the past couple of years.  Actually my daughter said to me “Mum, your memory is rubbish you should go and see about it”.

Why did I answer like that?    They were pushing me to give then a date, a time, but it has always  been a problem.  I remember at University, I was 40 years old and felt so excited to be given the opportunity to study but worrying that I would find it hard to remember any of the information that I had to learn.   See, that’s another thing I have always had a problem learning new information.    I studied Combine Science; Psychology which included how we learn new information, in fact my final year dissertation was titled Evaluation of Configural and Elemental Models of Associative Learning Using Visual Lexical Stimulus  – in simple terms that means looking at two theoretical models of how stimulus enables us to learn something new, using two categories of insects and their parts, and the cognitive process of learning which belonged to which.

For me it was the most challenging of studies because it was complex, however it gave me a good understanding of associative learning.    This does have a bearing on my diagnosis and my understanding of my own cognitive difficulties which makes up the reasoning behind my diagnosis.

My experience at University was such that I would have to read, and re-read the same things over and over.  Make notes and then revise those notes because I would not remember anything in them.   Lectures were a nightmare because I could not remember what was said in any detail whatsoever, my notes were a mess lacking in any cohesive form and made no sense once I had left the lecture theatre.  Short of writing down verbatim what was being said I had no chance of remembering details.  The worst part was the lack of any memory of the substance of many of my lectures.  I knew I had a real problem but never thought to ever question it with anyone.  Psychology is a long list of theoretical models by Psychologists and dates that have to be remembered in the correct order.  Arrrggghhhhh……..yes this was a nightmare for me but I would learn them by rote learning, and by making up ridiculous sentences with the initials of their first name.

I also studied History of Science, and with such a range of subjects, facts and figures I am surprised I managed to remember anything.  One thing I have always been good at is using my imagination and lateral thinking.  A learned skill from childhood when your memory is extremely poor.   During my finals, I had an exam whereby the questions arose of things that none of us had focussed on during revision and I wrote a complete essay using my understanding of the progression of science, and one paragraph I had read in a book on Alexander Von Humbolt and weather systems.

Following University I worked in IT and was fortunate enough to have a wonderful friend (thank you Darren) who would continually give me the technical instructions that somehow I could never manage to learn.  I wrote everything down, every single detail of instructions, and even then managed not to understand them.  And when I couldn’t remember something that I had been doing day in and day out, Darren would be the one who would tell me, yet again.    He did say on more than one occasion that he had already gone through a procedure with me, but thankfully always told me again.   This enabled me to be effective in the job I had.

Finally, as I was getting older, my memory problems was beginning to be more apparent.  The most apparent thing was that, not that I was forgetting, but I had no memory of events that day or previously.  Notes I had made seemed alien to me having no knowledge of writing them, and of course the information they contained I couldn’t remember.

So….was this new or was this something that has got worse as I have got older?   Who can say after 60 years of age that they have not wandered into a room and forgotten why they are there?  Or forgotten what they are talking about midway?   Or meant to do something important but managed to forget remembering after it is too late?

Back to my diagnosis.   I had a brain scan, the scan shows perfusion (reduced blood flow) in several areas of my brain.   Medial/parietal lobes, more so on the right, and an underdeveloped frontal lobe, but no perfusion there.    The underdeveloped frontal lobe is attributed to possible brain damage due to being dropped on my head as a baby (I asked = no), or repeated blows to the head throughout childhood from my mother.    I now would like to discuss with my consultant when I see whoever it is next year, my thoughts about this.  I can’t possibly have had Alzheimer’s all of my life.    It is written and was discussed during the appointment where I was given the diagnosis of possible Alzheimer’s that I do not have DEMENTIA.    ‘Not possible’, one doctor has said to me, of course you have dementia if you have Alzheimer’s disease because it is one of the dementias.  Confuses the hell out of me I can tell you!

So here I am with memory difficulties that I have had most of my life, preparing to become totally disabled through dementia, when I can no longer relate how I am to the ‘label’ of Alzheimer’s.

Is is wrong of me to say, I have always been like this and therefore know that it could be a long long time before dementia takes hold as much it will with anybody, so until then I will assume that my diagnosis is a label that cannot be proven until autopsy.

Of course I shall still be shouting loud at the ‘Empowerment Group’ for dementia meetings, because I can!   I shall be a voice that can speak for those who cannot.  I shall still be vehemently fighting for Dementia education for all, again because I can!

I am also getting involved in the Fibromyalgia Support group because that is what is affecting me the most these days with lots of pain.

Onwards and upwards, I feel it will be an exciting year of activities in local groups.

Dementia: Headaches and stuff

19 August 2015
Went to the Doctors yesterday because I am so tired of headaches,     brainday in day out, the pain in my head just won’t go away.   Sounds like cluster headaches but I have no break in them, so possibly migraine the doctor reckons.  She suggested that I try some Amytriptaline at a very small dose at night. However, Boots the Chemist say their suppliers don’t do a lactose free version!  So, I have a conversation about whether they can get any from elsewhere and here is the rub: they use two suppliers who in turn have a range of manufacturers they use, and they don’t make them lactose free…. So I say “can you not find a manufacturer who makes them?” I add “ I can go on the internet and find out who manufactures some and give you the information”. But, what the guy is saying is that if their suppliers do not buy from these manufacturers then, no, they will not get them.

Thanks BOOTS, what a ridiculous situation to put me in!

Maybe I will have to go back to my Doctor and ask her to supply me with a separate prescription so that I can trawl the chemists in the towns trying to find a different one who uses alternative suppliers to BOOTS, in order to find a lactose free version whilst coping with a head that is being ‘drilled’ constantly.

I also talked to her about my mood being up-and-down at present, becoming annoyingly teary throughout the day. It seems the past 6 months has finally caught up with me. My marriage breaking down and leaving my husband, moving home to a new area not knowing anyone and my mother dying, along with the trauma my sister is constantly putting us all through with her constant bizarre and unforgivable behaviour with my Dad.

After a visit from a lovely lady (Alzheimers Support) giving me all sorts of information of what was available for Young people With Dementia, I joined a group for a ’stroll and supper’ at a nearby park. Not knowing the area at all, I planned my bus journey on the net, which stop to get off with a walk across the park to the meeting place. Yes, I felt anxious as I left and found I had forgotten my mobile phone, but ‘not sweating the small stuff’ decided it was not important enough to get it and risk missing the bus.  It was a good night and met some lovely people, but I was excruciatingly aware that I was the only single person there, and this upset me greatly. So, I am going to ask whether it is at all possible to find out if there are other people with dementia who want to meet up as a group singly.

So, all in all struggling a bit at the moment.

Dementia: The question of showing pain

As you know I have Alzheimer’s, I have dementia even if it in the early stages I still have it.  I want to be pro-active in the education of what it is really like to live with dementia in the hope that it helps in understanding how things can be made better for us.

What I am going to write about is my opinion only as someone living with dementia, I am not a professional.

My mother is now in her 9th day without any fluids at all (2 weeks without food).  She is unable to take fluids because her swallowing reflex no longer works.   She has been lying in bed for over a year now in the nursing home with vascular dementia.  She has been compliant, polite and thanks the carers and nurses for all they do for her and they all love her.

A few days ago I was concerned my mother was in pain, she was kicking with her legs.  “She has restless legs” my sister comments, “it’s natural that she is moving them constantly. ”  I am not convinced.  I try to ask her if she is in pain, but she cannot speak other than make a nonsensical sound.  Does that mean yes, or no?  My Dad, sister, brother and sister-in-law are there with me.  They have sat with her far longer than I have and know that she has always moved her legs even though she does not appear to be able to move anything else now.  Still, she looks to me like she is trying to knee my Dad’s arm which is over the bed holding her hand.

The carers have turned her and she is now facing away from me, but she is trying to turn her head to see me.  “Are you in pain Mum” I ask, she makes a noise and I am now convinced that she is.  I go and get the nurse, and she tells us that she has open bleeding pressure sores on her back (her dressing had come off), which is understandable after such a long    time in bed.  I am concerned when the nurse tells me that they give no pain relief for sores other than turning her.  They will turn her every two hours instead of four now.  I don’t understand this at all, later another nurse agrees that she may have a small dose of morphine which will take the edge of the pain of her sores.   The next day the original nurse is on duty and says she does not feel she is in pain because she is not ‘grimacing’ which is how they tell, so she will no longer have any pain relief.

On day 8 and she is non responsive, no movement at all.  She is simply breathing.  My Dad speaks to the Dr who is visiting, and he agrees to speak to the Manager of the nursing home.   Later the Manager comes upstairs to the room and indignantly tells my Dad that my Mum is always given pain relief if she needs it.  My Dad asks how they will know she is in pain, “I am a nurse she says, I can tell because they grimace” – She is leaning forward pointing to herself, her voice very defensive.  My Dad does not have time to reply as she has walked away.  He is so stressed and upset that it is not appropriate to challenge her behaviour in front of him.

My Mother is very very weak and not speaking, or moving, and my Brother who is visiting later is concerned she is in distress and asks for them to give her some pain relief.   They do, but still her face is not ‘grimacing’.  Whilst he was there a nurse did a test to check her responses = yes she responds to pain.

I am incensed.  Why is it such a big deal to give my Mum some palliative pain relief when the nurse tells me that her sores will be painful to her?   The nurse mentioned she will not have a ‘natural’ death if she has full doses of morphine.   I have told my daughter, I do not want a natural death, I do not want to be in any pain.

After 9 days it is inhumane to guess whether my Mother is in pain or not.  The small dose of morphine will not hasten her death but WILL take the edge off any pain from these open sores.

I have tried now several time to talk to them, my Dad has;  my sister is the only person who does not think she is in pain and doesn’t need any relief.  My sister is the only one in the family who has long conversations with all of the staff including the manager about how the rest of the family are against her!   My sister’s behaviour is tearing the family apart and making my Dad ill with stress.

My thoughts are this:   At the end of life is it possible for a dementia patient not to ‘grimace’ when in pain?  I know that the ability to communicate when you are in pain is lost.  I myself often never think to say when I am in pain with my arthritis/fibromyalgia when I see the doctor, I simply forget even if it is what I go for.   I even forget/not think to take pain relief to ease it sometimes.    The Alzheimer’s Org site talks about the family also having some input about discomfort of a person, so how come it appears that a nursing home Manager has the authority to decide whether she is ‘grimacing’.

Remember, this is simply my account and opinion only.

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(Afternoon) My daughter and I have returned from seeing her in the nursing home.  My sister has said she stopped breathing briefly and then started again.  She has taken my Dad to have his hair cut “You can either go up to see Mum or have your hair cut but we need to hurry because the appointment is in 5 minutes, its up to you”, my Dad desperately needs a haircut so he goes to have it cut.

My Mum’s breathing is erratic, but she is aware that we are with her.  I reminisce with her and stroke her hair.  I talked about her favourite hymn that her mother used to sing to her when she was little and we played it on my daughter’s iPhone to her.  As my Mum is lying still, her breathing ragged and not moving a tears leak from her eye, she is understanding everything she is hearing.   I wish she is out her torment soon.

Alzheimers Journal: The move

I packed all of my life into boxes, how much stuff can one get on a small boat is incredible!  I am sure a lot of it should be thrown away and when I continue opening boxes I shall be doing so.   Trying to be organised when you have Alzheimer’s is  incongruous to the task.   In my defence I will say that I was trying to keep the boxes light by adding a random assortment of things into each 😉

I dare not stop to think about the emotional cost of what was happening because I needed to be focussed on making sure everything I needed to do was done on time.   I tentatively wrote on each box what was in it, but by the time it was filled I had no real idea what I had put in there!

I said goodbye to my cat of thirteen years who was remaining behind with my husband, she would be happier to remain in a life that suited her.   To my friends I had made in the marina, and my boat that I had lived on for 5 years.

I will allow myself one teary week, then will get on with it .

Moving into an Anchor Housing studio flat is not the worst thing to do.  I have already met some lovely people and with the knowledge that there is a Manager on site it is extremely suitable.

Unpacking is a nightmare, but I don’t need to tell you that do I?   I have little furniture having bought a pine bookcase and tv table at a community furniture project that I shall very shortly be ‘upcycling’ by painting and maybe distressing.

In my first week I have had a cooker, fridge freezer and carpet installed and fitted.

I have been sleeping on my chair which is excruciatingly painful when you have fibromyalgia.    Then my wooden bed arrived which I put together – splendid.  No mattress yet though 😦   I have tried to make a ‘nest’ of duvets and anything soft to use it to sleep on, and its almost comfortable (okay not the right word but I am being positive here).   Then yesterday I put together the drawers that go underneath the bed, well supposedly!  They are either 2cm to high or the bed is 2cm too short whichever way you look at it.  So I have emailed the ‘not so helpful’ Mr Mattress.co.uk, to ask if they can give me a date for my mattress being delivered (which they previously just said no), and what can be done about the drawers not going under the bed.  Frankly I am not expecting much response from them, and I am tiring of trying to sort things out.   I have noticed that where as once I was able to spring into action and get things done, now I have to plan everything I do.  The stress makes me more ‘befuddled’ so I will take my time, there is no hurry.

Emotionally, I do what I do to stay positive and upbeat.

Alzheimer’s: When prosecution of child sexual abuse is unable continue due developing Alzheimer’s

Before I start, I must state that this is my opinion only.

Lord Greville Janner has allegations going back to the 70’s for child sexual abuse when he was an MP in Leicestershire, UK.   It is said he befriended manager(s) of children(s) homes for access to young children.    I remember one case in particular regarding a children’s home in a small town where I used to live.   A friend of mine worked there and gave evidence during the court cases when it was first investigated.

Greville Janner’s name was mentioned way back and I am not going to go into details because you can read the facts in the news today the evidence regarding whether he was involved in child sexual abuse, and the failure of the CPS to bring him to court on several occasions.

The Crown Prosecution Service has deemed him unfit to bring to prosecution because he is living with Alzheimer’s disease.   So the case will not go any further meaning those adults who are living with the heritage of being a victim of sexual abuse at one of these children’s homes will never be able to see justice.

This is a very emotive subject, but one I think that is important.  Without the recognition of a court judgement, will these people feel betrayed by the justice system?

Lord Janner may be unfit but if there is a case for prosecution, surely he should lose his title?  As a Lord he remains to sit in the house of Lords, Alzheimer’s or not.

Surely having Alzheimer’s does not absolve someone of previous crimes committed against people, unless they are not able to mentally distinguish right or wrong at the time of the crime.

Is it right to let them off?  Should they still be prosecuted even if they are unable to serve a sentence.  For the survivors of the abuse it would mean a public acknowledgement of this man’s crime towards them.

I feel very strongly about supporting survivors of any crime, because they need our support in a world where justice may seem very cruel at times.

My personal view is that yes – he should be prosecuted because I refuse to believe that his memory of his whole life in the 1970’s and 80’s has been forgotten.   I can also see on the other hand that this would also be very difficult to do.

This is not an easy debate to have but one which I feel must come.