Proud to present…..

This is my story in my own words with the help of journalist Penny Bell who is creating a series about dementia, you can follow her on Twitter here.  Or view Linkedln profile  here.

Discovering Dementia, Season 1, episode 3 Gill’s Story

I recommend you also listen to the first two episodes:

The first episode is with her Mum who was diagnosed with dementia.  This is lovely to listen to.

The second episode is recorded at the Alzheimer’s show held in London.   This will give you an idea of the shows that are worth a visit to learn everything about dementia, for people with dementia, family and carers.

I know Penny has more to come.   It was fun working together with her during the recording, especially as she came along with me to the YPWD (Young People with Dementia) gardening group which I love.

Groups for younger people with dementia are very important because it stops isolation if you live alone, enables fun activities which are age appropriate.  Younger people with dementia have different needs to elderly people.  We come from a different era, singing groups will focus on 60’s and 70’s music, nothing like having a good old sing song to ABBA and the like!   Not that I sing, in fact I have no singing voice at all, when I try to sing a weird soundless screech emerges that is not very pleasant.  If I am ever required to sing my miming abilities knows no bounds.

Sadly there are not enough groups that support younger people living with dementia throughout the county.  Especially groups that provide a wide range of activities such as walking groups, Kayaking, Art workshops, Poetry groups, gardening groups, furniture recycling… the YPWD offers all of these and more in the West Berkshire area.

 

 

 

 

Living in Pain and not remembering why

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Living with dementia can be strange because you don’t always feel like there is anything wrong with you.  In the early days, you know that there is something ‘not quite right’ with you but you can’t always put your finger on it.

I don’t feel like I am any different to any person over 60 whose behaviour and memory is starting to get a little wonky, but in reality, there are things that are creeping up  that I am not comfortable with about what is happening to me.

I keep forgetting what it means to live with Fibromyalgia.   I live with pain 24 hours a day, 365 days a year, in my feet, wrists, hands, knees, back – hell everywhere really.   So when my fibromyalgia is flaring up and I am so debilitated by the pain and fatigue, I should not wonder what on earth is wrong with me.    I toddle off the the Doctor’s to find out why my finger is so swollen stiff and excruciatingly painful with a lump on the joint (which later disappeared).  At the same time I tell him my glands hurt, my eyes are sore, it is uncomfortable to breathe and I am in so much pain I can’t get out of the chair.  I sleep for hours because I feel so ill, but I can’t sleep at night because the pain is so bad.

I have some blood tests done, even though he says he thinks it is just my fibromyalgia……..I go home and feel a fool.  How did I not remember how ill my Fibro flare ups make me.  Now I feel so guilty that I am beginning to recognising that this is happening every time it is at its worst.   I simply forget how ill it makes me.

I think this is to do with my dementia.  Yes, I function fabulously day to day, but living on my own has its drawbacks.    This is one of them, having no-one to suggest to you that this is simply a Fibro flare up, and can I remember how it was having the last one?   How bad it got, how ill I was.   No cooking, cleaning, in fact daily living just stopped because I was not able to do anything.  ‘Fibro Fog’ meant I felt more confused and forgetful than usual.

When these times arise and I am sitting amongst the mess of my home, living off quick snack type foods, too exhausted to wash, I look at whether my dementia has worsened.  I think I am less able to be spontaneous than I have always been.  I find it harder to ‘sort’ things out and it takes me more time than it should.   There are times when I think ‘why didn’t I think of that?’ when something obvious has been pointed out.   I feel like I am forgetting a lot of things that I have learnt.  Recipes I have cooked forever, people’s names, places, things in my past.  However, having dementia means I always adapt and not worry – try not to sweat the small stuff.

So, right now I am in so much pain without any painkillers that will touch it, waiting for it to dissipate enough to function normally again and somehow I need to make myself a reminder to understand the next time this happens that the possibility that it is my Fibromyalgia and to wait but what happens when I can no longer understand what is happening?

Quandaries and solutions

Life goes on with its ups and downs and you think, ‘I really must write my blog‘.  But then you think ‘I better not write that‘.   I know that many of you know what I am talking about because it is that moment when you have an urge to share something very close to you but worry that it will cause a problem if others read it.  But how to let people know how everyday things affect you otherwise.

For me, living with Alzheimer’s (ALZ), there are things I want to just write because I am at a very early stage still and it may be of use to people knowing even at this stage how it affects me.    So, what do I do?  My blog is not anonymous in the sense that it has a name, not a random couple of words.  Maybe that was my mistake, maybe I should have made it more anonymous. I could have called it something like – ‘Missing A Marble‘ perhaps.   I guess it would not have made much difference apart from not being seen as a real person.

There are lots of things that go on in my life where my ALZ or dementia affects me but only in the slightest way.  In ways that would make me question why it affects me that way in particular.   The type of wondering that lingers in a corner of your mind knowing that you can’t quite put your finger on why you should react that way.

For a while, I have been under some stress at specific times.    To all people living with dementia, stress is awful but then stress is awful to everyone you could argue.  Why is stress worse for me?  When someone is shouting at you and you have no way out, it can make your dementia feel worse.   Most people can shout back, hold their own, and stop abuse towards them, and of course, there are many who simply can’t.  But, what if you have always been able to deal with angry people and suddenly you can’t?  You find yourself trying to diffuse a situation where someone is shouting in your face about nothing in particular, maybe most would find it difficult to do.   Not me, I trained three years as a counsellor, I understand how to diffuse situations, can read the body language, can see past the abuse that is vomiting from someone’s mouth.

Now, though as I draw on all my knowledge and experience, all I can come up with is – “la la la la la la” as loud as I can!   Worked, but even I realised that it was a bizarre thing to be singing at a time when another person is at their most aggressive.

Next time is different, I can’t cope with being shouted at.  The red face thrust at me as the mouth is opening and closing with the most absurd ridiculous noise emanating from it.  I start shaking and crying as I call the police…..

I have Alzheimer’s, I don’t need this. Nobody needs this.  But, I, cannot cope with it.  They should not be abusing me this way knowing I have dementia.

This is what families can do to each other.

But,

I strike back.   I will not be overlooked, patted on the head and accused of being “unstable“.  I will show you how capable I am.  How I can still organise charities to pick up furniture, quotes for house clearance, create timelines, communicate with solicitors, get things moving.  Not because I want you to see me being capable, but simply because I have the time and I can do it.

Travelling with Dementia

My experience of holiday travel with dementia with hopefully some useful tips.

I recently had a wonderful holiday in Tobago.  I have fallen in love with the island as it is sheer paradise.  I felt there was nothing to do but relax, recover, swim, eat, relax, read books…..I read six books in a week, and exercised more than I have in months swimming several times throughout every day.

Travelling when you have dementia however early can be horrendous.  The trick is to plan well ahead.   Even with booking my ‘last minute’ holiday knowing what makes it less stressful helps the planning.  What works for me may not work for everyone but maybe I can say some things that you may not have thought about.

  1.  Getting to the Airport

I checked the coaches and the trains.   From where I live there is a train that goes from my small local station to Reading – a major station.  Then from Reading there is a train to Gatwick Airport in UK.  Gatwick Airport trains even has its own platform.  However, most of the trains that I wanted that day appeared to go to London which meant travelling across London by tube to another train station which is not good for me.  So I kept looking and found that a direct train to Gatwick Airport started at from 2pm and I booked that one.  From Reading to Gatwick Airport in one go – perfect for keeping distress down.

I need to know what platform the service goes from in advance, so that if I am on the station previously I check out the platform so that I know where it is.

2. Avoiding the stress of travelling

I worry.  I get distressed if I think I am going to be late if there is a time deadline because I have little sense of time these days, also because I know how unpredictable the train service can be with delays and breakdowns.

So, I looked for an overnight stay at an hotel at the airport.   I booked a room for my daughter and I online at the Hilton Gatwick South Terminal with a great deal.  Checked in online so that I only needed to pick the key up.  We both met up there, me being the first to pick up the keys and relaxed with a glass of wine whilst I waited for her.

Food – I knew from a previous experience that the hotel is a very short distance from the terminal so we went there for a cheaper meal that suited us fine.

In the morning we were up, showered and ready to go.

3. De-stressing at the Airport

We had pre-booked the Airport Lounge for a relatively small cost to wait for our flight after checking in our bags, which we also did online.  This makes things so much easier and quicker.  The Lounge offers a good range of breakfast, tea, coffee, drinks, newspapers, comfortable seats  which are all included in the price and is quieter.  It is definitely more relaxing that sitting in the general area with lots of people.   The bustle of people can be more stressful when you have dementia because it is overwhelming, so airport lounge is a great place to counteract that.

4.  The Flight

Choosing your airline and seat I think is important.  When you are fit and able you can tolerate a lot of things.  In the past I have flown with the cheapest Airlines and laughed at cramped conditions and poor service, but then have paid next to nothing for the flights.  Now I have dementia, I must make it an enjoyable experience from start to finish to have a good holiday experience.  One day I will not be able to travel so I want to make sure that I can make travelling pleasurable for as long as possible.

I choose a good airline.  Personally I fly with British Airways.  It is not the cheapest but has the attributes to make it better for me.  I usually pay a bit more and fly premium economy which is better than economy or standard.  With it you get more seat room, and are offered  a slightly better steward service.   This holiday I flew economy – ten and a half hours of wishing I had upgraded to have a little bit more room!  15 years ago it would have been absolutely fine but not now.   Now it is important to make things easier, less stressful and pleasurable as possible.

Walk about on a long flight.  I walk up and down and don’t care how ridiculous I look I join others in a bit of space to exercise.  I wish I had bought some flight socks, because my feet and legs started to swell on the flight home.

Drink Plenty of Fluids.   Thing is about dementia I forget to think about whether I have drunk enough liquids if I am not at home.  I usually drink copious amounts of tea and (weak) coffee throughout the day, its just automatic.  Cup empty = make another.   When I am out and about it is another matter.  I never think about eating or drinking.  I try and take a bottle of water with me when I’m out because it reminds me to drink.

So on a flight, you need to keep drinking a small cup of water every so often.  On my Tobago flight I found that the stewards did not come round constantly with glasses of water, but you could get up and ask for some whenever you wanted to, but I didn’t think to.  Finally when I was not feeling great I went back to get some water and was given a good amount and felt much better after that.  So you must remember just because someone with Dementia doesn’t ask, it is important to remember to keep drinking water during a long flight.

5.  The holiday

I have realised that it didn’t  matter if I didn’t travel to see much of the island.  Where I was was perfect for me.  It had the peace that I craved to enjoy myself.  We walked along the beach, up the coast road, to the local shop to buy water.  There’s a tale – there are some guys who are looking out for wives and we were followed by a guy with no teeth trying to tell us he was a good catch because he had a house and some land, he was also trying to tell me his age – 63, trying saying that without teeth!  Then a refuse truck came along, stopped and a young guy got out and started haranguing our follower to ‘leave the ladies alone’ and ‘stop harassing’ us.  It was very funny!

Even though there were far too many steps for my arthritis and fibromyalgia it didn’t matter, I found the route with the least steps to the beach – sorted.   Being comfortable with just watching the birds, sitting in the shade, a bit of swimming was a great holiday.

Returning home was the same.  I caught a direct train and it there was no stress.

Everything I do now I plan.  I am lucky enough to be comfortable with a computer and being online.  So I research.  I print everything out and I put it in a folder.  I print out itineraries for whatever I am doing if I am travelling so that I have one piece of paper for my handbag to check on ‘what do I do next’.

Next holiday is later this year so I shall be starting my planning a coupe of months ahead of time and start saving for it!

A trip to Parliament…

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Westminster, London.

(with London Eye in background!)

 

 

Before you start reading please remember that I do have difficulties with remembering and getting specific facts about things 100% correct… But these are my thoughts as I remember them.

 

 

It was cool inside Westminster building with great stone vaulted ceilings and carvings. My daughter and I stood looking down at our feet at the brass plaques declaring that Queen Elizabeth the Queen Mother had lain in state at that spot. Other plaques gave the names going back.  Along the sides down steps are rooms like cellars with stone arches in the walls and a broad arched window letting in light. Alice from the Alzheimer’s Society led us to the end room where tables were pushed together surrounded by chairs. I was seated at the top along side Debbie Abrahams MP the Chair of the group, who is the Labour MP for Oldham East & Saddleworth. The room filled up mainly with men, interesting that there were so few women amongst these people.

I was invited by the Alzheimer’s Society to attend a meeting in Westminster to discuss strategies for having an holistic review during the yearly dementia review with your GP.
The meeting started with Andrew Boaden, Senior Policy Officer, Alzheimer’s Society giving an overview of the inquiries findings and the recommendations to Developing a GP-led annual holistic review for people living with dementia and comorbidities.    Then I was given my 5 minutes to talk about my personal experience of living with dementia and fibromyalgia taking some questions afterwards which was good. My 5 minutes included the fact that I have never had a review because I have been told I need to make the appointments myself, which is hard for me to do because I have no sense of time scale and little memory to do so. Calendars do not work for me because I forget to look at them daily, and unless I do that ‘thing’ immediately and not ‘I need to do that today’, I always forget.

When the discussion got going I was concerned that I kept hearing the word ‘elderly’. No mention of younger people with dementia…they had seemingly forgotten my introduction where I specifically highlighted Younger People With Dementia.
Dr Martin McShane, National Clinical Director for Long Term Conditions, NHS England spoke up that looking at ‘risk’ was a more important than reviews.
I wanted to say okay, but how do you know who is at risk if you don’t have any reviews? Sadly there was a long list of hands showing to speak so that it did not give me time.
I also wanted to say about those living alone and how an holistic could benefit them.
I did talk about my co-morbidities: Fibromyalgia, IBS, and said how times when my Fibro is flaring with lack of sleep, Fibro fog can mimic the confusion of dementia. If in a review it is not taken into account my dementia could be seen as worsening with confusion, but in reality it is my Fibromyalgia, which means that my lessens when my fibro has reduced.
It was interesting listening to them talk at a higher level, because these are the people who make the changes in the health system. Not sure they were convinced yet, apart from one person Dr Andrew Green GP clinical and prescribing subcommittee Chair, British Medical Association (BMA) who described how something very similar is working extremely well in his northern practice. Funded in a different way, it sounded like it was meeting this need already giving everybody, not just those with dementia, an holistic review on a regular basis. Sadly he also spoke NHS funding cuts would mean, this service would be a casualty of it.
All of the 6 women(out of 16) brought up equally important questions and discussion, and listening around the room at everybody I could hear that everyone has their own agenda according to their expertise and involvement.
At four on the dot the meeting was over and the next group was eager to get into the room to start theirs.
I talked to Alice, I enjoyed being here, this was good, I tell her, and we talk about other things I can get involved with………Oh this is not over yet, she answers, so watch this space..!

Having a voice…

I was invited by the Alzheimer’s Society to go to the Service Users Review Panel Conference in Manchester here in  England and obviously said yes please.  There were lots of groups represented in the room with both group facilitators and a few people with dementia – PWD.  For those of you who don’t know what these groups are about I shall tell you what they are and about my day.

I belong to the West Berkshire Empowerment Group.  This is a group that meet once a month to discuss and review…just about anything.  Any issues that have any sort of impact on someone living with dementia.  As part of the DEEP – Dementia Engagement Empowerment Project there are around 38 groups in England, Wales and Northern Ireland, and more in Scotland.   The groups are made up of people with dementia and a facilitator and is designed for people living with dementia to have a voice in just about anything locally, hopefully to also have an impact nationally.

First of all, I shall admit I was invited to this day – to go to a conference in Manchester and actually I had no idea what it was about or why I was invited.  I get so confused as to each of the Societies, Services, Groups, and Organisations are and whether they are affiliated to each other.    The trouble is one organisation is an umbrella for one topic, which in turn is an umbrella for various groups…and I can’t keep up with it.   So there I am going to a conference that is by the Alzheimer’s Society Organisation and had no idea it was for Service Users Review Panel groups, and then….I had no idea that the West Berkshire Empowerment Group was a Service Users Review Panel.   And, where the hell does DEEP come into it all, who is that affiliated to?  I have dementia for goodness sake I am struggling to keep up with who is who these days…

Anyway, it was a great day in which highlighted lots of work that many of the groups had done and were doing.  For instance, one group has worked with Royal Doulton in producing dementia friendly china ware which is not an insubstantial impact in dementia care.

In our group the West Berkshire Empowerment Group in the past we have given our opinion to research on books/novels specifically published for PWD.  Reviewed electronic gadgets such as key finders.  The group went to the Royal Berkshire Hospital at Reading to look at the signage and our review was passed back to the hospital for improvements.  We suggested a purple wristband for PWD so that they can be easily identified, because we know that many people like myself do not show obvious signs of difficulties, but after an anesthetic we could quite badly affected with confusion.  This has now been approved and the hospital has put this practice in place.  We also look at public transport and whether that is dementia friendly.  The groups also help the local community become dementia friendly.

This conference looked at what format worked for each of the groups, for instance some of the groups were on a 12 month basis only.  Some of that is because of funding.   The group I belong to rolls on and on and on…we have no time limit.   Our facilitator Louise Keane is particular active in ensuring that we have some great issues to discuss and review, and it became apparent to me that her  attitude towards the group is brilliant and makes our group attractive for institutions such as Reading University, and other services to approach us for our opinions.  Thanks Louise!

The opinions that were talked about were being looked at those organising all of the groups and it was quite surprising for me to hear that the lack of support for facilitators was felt by some of the new groups.  But this was a topic and a great one too to be openly discussed: could it be improved and enhanced. For me it was interesting to hear some people say they didn’t feel supported in knowing how to end a group after the 12 months, or how to deal with someone whose dementia had progressed and could no longer take part in any discussion. So it was good this conference highlighted these issues, and for me as a PWD to hear that.   I am sure that training for our facilitators will improve to enable the groups to grow and give us our voices.

It was great to hear how some of the work that the groups had done had impacted not only locally but was being looked at nationally.

It just goes to show how small groups of people with dementia can have such a powerful voice if only given the opportunity to speak.   Anyone living with dementia who wants something more than just pleasurable activities, who would like a voice then I would encourage you to join your local DEEP group.  You can find your nearest group on their website.  Come along its great to be involved and obviously you get a cup of tea!tumblr_mqmztxxppp1rzwv55o1_500

Disappointed.

I had a disappointing appointment at the memory clinic the other week.  The nurse did my MMSE (Mini Mental State Examination) test, which I always do well with.  I can usually remember the three items, this time it was coat, book, and apple.  I put the apple in one pocket and the book in the other and had no trouble remembering it!   I am the master of solutions…

I did get one score wrong – counting backwards in 7’s from 100..I was never very good with numbers and have to take time to work it out in my head, I am sure I have dyscalculia (problem with numbers).  I got one wrong and she said I probably just made a mistake.  Really?  ‘No’, I said, ‘I meant to say the number’.

Just because my MMSE scores are high doesn’t mean that I am not affected by my Alzheimer’s.

I can tell what has changed for me in the past year since my last appointment.  One thing is the ability to tell when something said is being said in jest or for real.  I struggle to understand throw away remarks as being just that.  I have to question, ‘did they mean that?’ There have been times when my daughter has said to me that she or someone has been joking when they said something, that it wasn’t meant to be real, and I have struggled to think it out how I couldn’t have seen it.  But truth is I don’t get these things like that any more which can be a bit embarrassing for me when I respond in all earnest.

I also find myself crying for no reason at all.  NO I AM NOT DEPRESSED, how many times do I have to say that!  I have a positive outlook on life, in fact I think my life is pretty good right now, despite having Alzheimer’s and despite the prognosis.  I have come back from a wonderful holiday….will write about that next and how I got on travelling, and have booked another holiday to Tobago in February to look forward to.  Anyway to get back to the ‘crying’ business, the nurse tried so hard to tell me how I have a lot on my plate and it is natural to get depressed about things. Grrrrrrrrrr…..I tell her I do not have reactive depression, nor do I have clinical depression, but I think she has her ears turned off.  Finally, thanks to my online friends living with dementia, I was told about PBA  (Pseudobulbar affect).  Online sites talks about ‘emotional incontinence‘, although I prefer the term emotional unzipping as explained to me by Dr. Jennifer Bute.   Anyway, I think I may have to print out some information and post it to the memory clinic so that they can learn about it!  I took it the info to my GP to tell them that I did not want to increase any antidepressants, he took the information and typed it into the computer without commenting.

I also discussed about the 6 monthly reviews with my GP which I have never had.  Apparently I am supposed to make the appointments myself.  I asked how I am supposed to remember to make an appointment every six months when my memory for appointments is pretty awful?  No real answer, but a suggestion to get the Doctors surgery to remind me- that’s not going to happen because they don’t do that either.  So, I am left without a solution for that one other than buy my diaries in advance to make sure I write a note in.

All this is more difficult when you live on your own.  I don’t have family to remind me to do things, or notice when I don’t,  or notice when I am not up to par that day.  I have to rely on myself alone.   Take it easy on the days when I am not 100% and push myself on the the other days.

I am also struggling to take my medication every day.  For goodness sake, I leave it next to the kettle so that when I make my morning coffee I can take my tablets, but do I?  Nope..I seem to be blind to the blister pack, and simply get my coffee.  A friend suggested that it would be better if they incorporated medication with coffee/tea and no one would forget to take them then!    I think, how can I not remember that I take medication every day, how stupid is that?  I am an intelligent woman and am used to putting all sorts of solutions to  put things in place, but it seems my brain simply switches off to certain things occasionally. Don’t think I haven’t tried all sorts of things because I have.  I have thought of a board on the wall to mark when I have taken it but I know I won’t keep that up.  I am now on my second phone app with a reminder to take them…which seems to be okay at present.  I tried recording my voice telling me it was ‘time to take my medication’ but randomly it started up during the middle of the afternoon!   Right now I have an app that is a simple reminder and is working.

There is a research study I would love to join but have realised that joining any research study is going to be hard for me because I have no ‘study partner’.   Single people living with dementia seem to be more disadvantaged because they have no ‘other’ to monitor or talk for them.  It is so hard for me to acknowledge that.   I did ask the Alzheimer’s Society if they could find someone/a befriended for me but I am unique in that I am so early in my diagnosis there is no one suitable for me.  I guess looking for a ‘friend’ to do things with who will get to know me and maybe travel with me to meetings etc, is a tall order and would take someone who is in a position to be flexible who would like a friend also!   Who knows maybe I shall meet someone who is need of a friend also….

As well as my recent holiday, I do have daily good things.  My allotment is coming along, slow but sure.  Once I find a way of getting some free pallets to my plot I shall continue to make some raised beds.  I had lots of veg this summer and am planning for next year already.  I do enjoy my activities with the YPWD – Young People With Dementia group.  I realise how lucky we are in Newbury, Berkshire to have them because what they provide is quite a rare thing around the country, which will hopefully with change with new groups springing up focusing on younger people with dementia.    I have enjoyed my weekly gardening with them, and the art activities we have done.  Recently we have had Harriet with us from the Corn Exchange in Newbury with us organising some activities in connection with the Library, and a morning talking about childhood books was most enjoyable.  We have drawn and painted, and created paper sculptures.   Yes this is an important group for me because I feel like I can be myself and not have to be ‘ultra okay’ all of the time especially because they are all truly lovely people.