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!

Living with Dementia: I am fine, maybe they got it wrong?

I consider myself to be high functioning with my Alzheimer’s.  In fact some days I can almost feel like there is absolutely nothing wrong with me.  I’m ok.  No problem.  Maybe the diagnosis is wrong after all.  Maybe I will continue being ok forever.  Yeah!

Then something happens and it throws me.

Yesterday, I went out.   It was 1:30pm and we went to a marina and I spent a little bit of time alone browsing in the shops.  In the handbag shop I chatted to the assistant about Radley bags, Kipling bags, and I bought a new slimline Kipling purse for my small bag.  I walked around another shop full of pale goods that have no function other than to look pale and interesting.  All very nice, all very expensive.

Next was another marina, I went into the shop and bought chocolate, and then sat on the bench outside to wait and watch the world go by.   On to shopping to get some provisions in.  We walked round the town, into the mall, around some shops, and on to the supermarket.  My fibromyalgia was flaring up, my body was/is screaming with pain, have done some brass polishing on my boat previously.  But, these things have to be done!

We got home at 6:10pm.  I hurt like hell and could barely move.  Took my coat off, dumped shopping in the kitchen, and bent down to take my boots off…………….

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HOW IN THE WORLD DID I MANAGE NOT TO NOTICE THAT!!!   

My first reaction was to laugh hysterically.  Well who wouldn’t.   Then, reality set in.  Fear of not being able to dress properly.  Ok this was not the worst thing in the world but it has ‘rocked my boat’ a bit.

 

 

 

 

 

 

 

 

 

 

 

 

 

Do not smile with pity in your eyes

Do not smile at me with pity in your eyes
because then I see an empty heart
Do not write with sadness in your tone
I can still feel every word you write
Or speak in a way that simplifies your voice
in case somehow I have lost my intelligence

When you think of me look at who I am
not who I was when we bounced against each other
Remember the times we had being creative
laughing and talking till all hours
Tthrowing our dreams in the air hoping
to catch them when they floated close enough

Listen when I speak to you because I am still here
I can still feel the same when you discuss a thought
I can still laugh and throw ideas your way
You may see a few cracks but don’t dwell on them
enjoy what I still have and am inside
Understand what I have to say is important
worth a serious listen and response
as you would anyone else in conversation

Think of me with the love of the friendship
we have embraced before, secrets we shared
happy days, the troubled times we put to rest
Now bring that to our communication
A knowing smile, words special to just us
Remember my personality and understand me
Its still lurking in me waiting to peek out
and surprise you.

How do you reach someone who appears a shell?

Speak to me with music that I listened to
being collected on my iPod ready for use,
Speak to me with photographs that I have taken
perhaps seemingly random but
those decaying buildings held sway for me once.
Read to me: poetry, a crime novel, no romance please
George Elliot; my favourite classical author

Know me, that I am not a stereotype
When touch is important, know that I HATE it
Unless I have a manicure or pedicure
Know me in dyspraxia and dementia

Brush my hair I love that feeling
Give me my 18” of personal space
know me that I needed that once

Know me that I love all things alternative
and that my sense of humour may be dark

It matters not
that you may not see these things in me
But know that is what shaped
my personality to the person I became
And to each of you, dear friends
I showed you a side that remained yours alone

So
Do not smile with pity in your eyes
Let me see instead, love, understanding
or a wonderful wickedness of a life enjoyed

Brain to mouth, Receiving, Over?……..(Silence)

jigsaw brain

Yesterday when I got up I started reading a book, so I read from just before 8am and finished it around 9.30pm. I simply could not put it down it was so exciting. This morning lying in bed I was thinking about writing my review of it, but cannot for the life of me remember the name of the book or what it is about. I have absolutely no memory of it, nothing, other than reading a book so good I had to finish it in one go!

I am reluctant to look it up on my kindle to see what I have read as I wish to search for triggers enabling me to bring all the information to mind and there is a part of me that doesn’t wish to hurry this process. Take it slowly, do it right, no frantic word search in my mind to find the key, no frustrating inward shouting at myself ‘what is it about’. 

I will make another cup of coffee and see if I can work through this methodically to prove that I can remember it with the correct triggers I can give myself.

Right here goes: it was a thriller, but not horror …………. there’s the trigger and I have it – Before I Go To Sleep. Eureka! that was easy.  My first memory was a hotel room….can I remember the names; Ben, Claire, Dr ?, Adam, but what was her name..Christine! Eureka again!  Do I remember the details of the book?  Some, not all, if I try to give you an outline I would get confused, I would not be able to get the sequence right but it does not matter because I know how it made me feel when I was reading it. I was excited, on the edge of my chair, I couldn’t put the book down and felt guilty about all the things I should be doing as I was reading, but still I could not put the book down.   

catbookSo how do I review books when my memory about the storyline itself is so poor? I go on the fact that I know what I like, how a books makes me feel when I am reading it and what emotions am I get from the way the words make up the story.  Does a book make me think, do I break down the plot in my mind, can I see what the author is trying to show me. Did the book give me the escape that I enjoy?

What the author is looking for in a review is whether the reader loves the book on as many levels as possible. No book will be loved by ALL because we have different tastes and enjoy different styles of writing. I struggled with the first Harry Potter book and could not read the rest because I dislike the way J K Rowling writes, however millions of people love reading the series. I do however love the films and believe her imagination is wonderful.

When I look at my Goodreads read-books-list there are titles I have no knowledge of reading or what the books are about which means I could read them again as if they are fresh to me, but reading a style of writing that is comfortable is not challenging my cognitive processes. Finding grammatical errors in a book with writing that lacks the finesse of established skilled authors exercises my cognitive skills, because I am determined to focus on understanding the story. This is not always easy when there are days when I struggle with the construction of sentences and have to read the same paragraph repeatedly to make sense of it.  It is often easier for me to leave the book and do some writing.

In my thoughts words flow so easily, I don’t struggle to express myself and can say exactly what I want to say. The difficulty begins the moment I come to speak aloud, then the ability to retain this flow is completely lost; the connection between my brain and mouth is faulty.   I can however write better than I can talk and I believe this is because I am a touch typist. I think – and the words appear in front of me like magic, but if I stop to construct a thought to write it down it disappears. Sadly though this ability does not encompass my memory.  I do have to read over what I have written and rewrite quite a bit though because my fingers are sometimes wayward and write their own things down!  The process of writing takes more time and effort than it used to.

But today I am rewarded finally with some memory of the book I am about to review, so with the addition of flicking through the pages to remind me of the story and using the notes I have made whilst reading, I shall write my review.

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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.

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.

Today is another great day

Hubby was sorting out some memory sticks from a cupboard and handed me a pile of mine that I had forgotten I had and on one is some of my photographs that are missing!  I had forgotten I had put some on there so am pleased to have them back. Yay!

Dementia Mentors

Yesterday we had an online meeting for the Dementia Mentors project that I have become involved with www.dementiamentors.com .  This is a site for people WITH Alzheimer’s and Dementia throughout the world, MADE BY people with dementia and Alzheimers.  It is to support people who have been newly diagnosed and show them that we LIVE WELL with these things not suffer from them.

Only people with Dementia and Alzheimer’s knows what it is like to have them so rather than reading a leaflet this site is to reassure the recently diagnosed that we understand and can show that life is just as fulfilling and positive by offering an online meeting with a mentor who really understands.

I did not realise how little there is out in the wide world for younger people with Alzheimer’s and Dementia who still have high cognitive functioning.  Most of the groups and support available is for older and more advanced stages.

Memory Cafe

The last time I saw my Consultant she introduced me to Aileen from the Alzheimer’s Association and we chatted about what support there was available for me which was appropriate, she said she would look into it and get in touch with me.  Today I had a phone call from her to say that she was looking at a pilot scheme for Younger Early onset Dementia/Alzheimer’s people to start a Memory Cafe in the Derbyshire Area.  Brilliant!  I am looking forward to this first meeting to see what it should be like, what do we want out of it.  I do love to get involved in something worthwhile, it gets me fired up with a purpose.

Today is always another day..