Food, dementia and me

Whilst my brain seems to be remarkably good still, other things about my dementia continues to ‘trouble me’.  When I say trouble me, I don’t actually mean they trouble me, I mean they are not quite normal for people in general.

I think food and eating with dementia is a very complex thing, much more so than people realise, especially when you live alone.  The usual questions at the GP or Memory Clinic appointments are:

Q.  Do you cook for yourself okay?      A. yes

Whether or not I finish eating it or not is another matter, or indeed whether I can save some of the excess to keep for another day.

I still don’t get hungry and have to look at the time to see whether I should eat or not.  I could quite happily go all day without food.  On average I would say that half the time I have one cooked meal a day and nothing else, the other half I manage to get a Gluten Free sandwich or snack at lunchtime.  There lies another problem being Gluten Free I don’t always have any bread and everything else is a poor quick snack substitute so I don’t bother. Regulating how much I eat can be tricky sometimes, especially if there is something I really like the taste of because I just want to experience that taste till whatever it is has all been consumed.   For instance I cooked a ham joint and wanted to finish the whole thing because I like the taste, I did manage not to though !    A lot of food has lost its taste for me and things I used to enjoy seem..tasteless and I can’t really be bothered to finish eating something that doesn’t have that – taste appeal.

Drinking enough fluid can be a problem although I try my hardest to drink a fair amount of water and other drinks, weak coffee or fruit teas, throughout the day.    It is, for me, something that it a conscious effort I have to make.

So when you ask a person in the very early stages of dementia if they have eaten, or are they okay with cooking for themselves fine, understand that the answers are far more complex than the question.

Note:  I am not managing to lose any weight so I am definitely not starving myself!!

 

 

 

 

January 2018: what it means living with dementia for me this month

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What is left out..

Moving to a new home and new GP surgery.  Moving Doctor’s surgeries is always fraught with problems of nobody knowing who you are, how you are, and your medical history.  Medication history has to include your doctors knowledge of you personally, especially when a new doctor can only read what has been written not what was left out.  So I see my new GP and talk to him about myself and my dementia.

I have always had my medication in a weekly blister pack given in four weekly lots.   So when my new blister pack is delivered there is a week at a time.  This means I have to be in my house every Thursday to receive a weeks dose of medication.  This is not acceptable to me to because it mean I cannot leave the house that day until the medication has been delivered.  I challenged this with the Surgery and the pharmacy and was told that the Doctor advised that I could only have one pack at a time – why?  Because I have Alzheimer’s.

What does this say about me?   1. I am incapable of taking my medication one pack at a time.  2.  My dementia is worse that it is.  3. My doctor has not listened to me or does not believe a word I say.

What does this say about the service in the area I live in now?  I have worked hard with my old local services to make things better for people with dementia.  It appears that in the north east of England the services fall way short of what they should do.  The disparity of quality of services across our country is abysmal quite frankly.  This is not about how much money a service has it is about how much training they have had in dementia awareness.

Incidentally, I had recently had an appointment with the Memory Clinic and the Psychiatrist (sadly) said that even the tests scoring are different from what I had been used to were not used, and that the service ‘here’ for younger people is poor.  I thank her for her candour.  I am no worse than my last tests, which means I am still very early on.  This for me is a relief to hear.  She left me with the usual that I will have the 6 monthly follow ups to see how I am doing, ‘sorry there is no support for you whatsoever’.

Hey ho, I can see that it may be an upward battle to get my GP up to date with how to include people with Dementia into surgery practises.

What is left out?  Knowing someone, putting down on paper that this person is capable of taking medication, they are at a very early stage and to treat this person as not yet needing the support of taking control of medication etc.

 

 

 

Finishing up 2017..

Heck that year just flew by.   One minute I had started 2017 then POW it was over!   I expect there are many of you thinking exactly the same with maybe:  Wasn’t that a great year, or thank goodness that is over!   For me it was thank goodness that is over for part of it, but also that was great for other parts.

I said I would tell you about my holiday first of all, although it seems a long time ago now.  We sailed from Copenhagen on the ship Serenade of the Seas, to Oslo then Kristiansand where I had so much fun on a   Sailing for two days to Reykjavik, a couple of days there, then on to Akureyri in Iceland.  Wonderful place!  Always wanted to visit Iceland and it did not disappoint.  Whale watching – what can I say!  Only two small boats at a time allowed in any area, we were suited up in red all-in-ones on the top of a small boat…and then we see the spray from a whale.  Oh oh I can picture it today as if I am there.   After seeing a couple of whales from a short distance there just beside us is a whale, so close I can see his eye.  Our guide is excited, this is a new whale he tells us, we have not seen this one before.  The whale circles us, coming up and diving down, it is so close to the boat.   The guide is talking on his radio telling of this new whale visiting the bay in Iceland.  There are no big splashes, just gentle rolls, and dives, it appears that this new whale is curious about the boat and is checking us out.  Our guide is just as excited as we are seeing a whale close up for the first time.   This is so unusual he says and I am bursting inside with wonder, awe, excitement and contentment.

One thing different about this holiday is that I stopped looking through a camera and took fewer pictures because you miss so much with a camera stuck to your face.  I took photos but it can never show the scale or the feeling standing there in the freezing weather seeing this awesome creature.

I loved Norway and want to go back, it is beautiful and there is so much to see.  I loved Iceland it is everything I thought it would be and it would be wonderful to see more of it.

From Iceland we spent four days at sea with 15′ swell of waves, thrilling! toward Canada.    Nova Scotia is a wonderful place to visit.  Halifax is delightful and we visited the graveyard for the victims of the Titanic, oh it was moving and so worth a visit.  We all know what happened but to see the names on the gravestones is just something else.   We had to visit Peggy’s Cove which it seems is where everyone visits and I think it is because it is like the dream place we would all like to live in.  Beautiful albeit dangerous coastline with picturesque wood board houses painted delightful colours, wild and free that is the feeling you get there.  I see the lakes from the bus and the houses in the trees with their jetties and dream of sitting at my window looking across.

Boston our destination does not disappoint.  We stay in a private house for four days that is delightful and full of interesting pictures and books.   A graveyard ghost tour at night is so much fun, and going to the Fenway Ball Park to see the Boston Red Sox win a game was awesome.   We followed the Boston Freedom Trail through the city, stopping frequently to rest up, drink coffee, eat cannolis, drink more coffee, rest up more…visit small museums and take in the ambience that is very Boston.  As truly wonderful holiday with my daughter and I didn’t get lost once!

My head seems full of dreams these days.  I feel like I want to pack so much of life in as if  tomorrow will never happen.

Well that was what I achieved going on a cruise last year.  This year will be different having moved house to a new area I will concentrate on decorating and settling in.  I have yet to meet people and make new friends here.  Sadly there does not seem to be any services that are appropriate for me and my dementia here.  I so miss the wonderful friends I made in the YPWD group in Berkshire (Young People with Dementia) and the activities that I enjoyed so much.  Berkshire are so so lucky to have such a service and credit to those who set it up, run it and work so hard to give us something to look forward to in a warm and meaningful way.

The move..that’s for next time.

 

 

The importance of being a voice of Dementia

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Been a while since I have put pen to paper/keyboard.   I have been away travelling the world again.  Making the most of life, making memories to look back on, to be reminded of when my dementia has progressed.    I will upload my photo’s, look through them, and then write about my experience as a traveller with dementia later.

What else..When I got back I went to Chippenham with the Alzheimer’s Society to take part of a training day for staff in the Swindon area about using PLWD (people living with dementia) appointing staff and volunteers.   My part was a short talk about how important it is for PWD to be involved in every part of organisation aimed at supporting them, whether that is by activities or information.  As it would be with anyone caring for a PWD.

I also sat with each of the groups during exercises which was very interesting to experience.  Hearing how one group of people thought it was not appropriate for someone with dementia to be part of the whole process with volunteers, thinking that it should be reserved for induction training.  That was interesting listening to that train of thought, one which I believe will be discussed and addressed further.

I was able to contribute by talking about why I feel it is so important that we have a voice in the Alzheimer’s Society.   Also, how much they need us as much as we need them.

Once they had discussed whether it was appropriate for someone living with dementia to be on a panel interviewing, I gave my personal thoughts and experience of why it is important for inclusion of PWD and on own experience of being on a part of a panel interviewing for a post in Reading Alzheimer’s Society.  I have been really grateful for Sarah and Claire there for allowing me a role in so many things with the Society.

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The thing is, being able to be a small part of Alzheimer’s Society work gives me a sense of purpose, a sense of dignity and obviously a voice for all of us living with dementia locally.

What was exciting was to talk to one of the members there who is just starting a *SURPs group (Service Users Review Panels) with people with dementia.  What is more she was excited to be setting up this local project.  I just know she will make a great success of it.

I think it is important to have a voice in how services are offered to us.  It is important to have a voice in anything, especially locally that affect us in any way.

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I urge anyone who is living with dementia and feel that they can still have a voice, or if you are caring for someone, or living with someone who you think who would like to have their voice heard, please do contact your local Alzheimer’s Society, Dementia Action Alliance, councils and any other groups to see how you can be involved.   It is not scary, it is personally empowering, it is as much as you want it to be or not.

*Service User Review Panels (SURPs) are a type of User Involvement group and provide an opportunity for people with dementia to influence the work of Alzheimer’s Society wherever they live in England, Wales and Northern Ireland.

Now to upload my photos from my wonderful travel and then I can tell you all how it went. x

 

 

I feel angry…

Why oh why are there so many articles about how to prevent dementia by changing your lifestyle?  This Guardian article makes me go……. Grrrrrrrrrr!

Lifestyle changes could prevent a third of dementia cases, report suggests

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Before commenting, read the article please.

What I would like to say is that change your lifestyle to drink less, stop smoking, be more active, keep your brain active and it will make you feel better, make your health better but it WILL NOT STOP YOU GETTING DEMENTIA.

The research/study they must be using to suggest lifestyle can prevent dementia can be applied to any of the following:

Heart disease, Lung disease, obesity, high blood pressure, Diabetes, help with arthritis..and any other condition that being active can help with.

Articles like this make me so angry.  Why?  Because it gives false hope and mis-information.   At present there is no cure for Dementia.  Research has yet to find out what causes dementia, they are beginning to understand what is going on a bit better, but not why this happens.  If they did all of us living with dementia would be on some sort of medication to reverse it, or totally halt it, and we are not.

These articles are really about unhealthy lifestyles and what can happen in the long term.  So why not write that?   Some dementias can be directly through lifestyle such as Korsakoff Syndrome caused by alcohol misuse or nutrient deficiency.   Some dementias can develop through the result of traumatic brain injury.

Here are some REAL sites to find information about dementia from professional bodies and people leading the support, help and information sharing for dementia.

So, I wish these newspapers stopped writing this rubbish just to fill space because it is not helping.

Rant over……..

 

 

 

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.

 

 

 

 

Reading Buses and Dementia friendly signs and instructions

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This is a picture from the internet of Reading (in Berkshire) bus ‘terminal’ stops.Spot the No 1 to Newbury stop….don’t see it?  nor did I when I was there yesterday.

Firstly I must say that Reading is upgrading its service into colour coded bus lines.  Each colour has a different area.  Newbury bus line is Jetblack where the buses are grey and black, some of the newer buses being grey, but no problem.

So I had a trip to the Royal Berkshire Hospital, and travelled into Reading by bus.  Because it was before 9 am I had to pay £5 single because my disabled bus pass card does not start till after 9.30am, something Newbury Council has changed to save money.    It takes a full hour on the bus so I guess that is not a bad price.   When I get to Reading I get off and then have to look for another bus to take me to the hospital.  I had done some research and thought a number 19b would be suitable……but none of the bus stops have any signs telling you what buses stop there!   As you can see on the map Station Road has about six bus stops/shelters but all without any signs.   All the time there is a steady flow of different coloured buses passing, stopping, then carrying on.   As to where they are going that  remains a total mystery to any visiting stranger to the town.

I am pain because of my fibromyalgia and I was feeling quite stressed out by now because I don’t know Reading at all having only visited the town twice before, so I walked up and down looking for signs to tell me where the hell all these buses were heading to.  Nope, nothing.

Fortunately there were some drivers standing around chatting and I asked them what to do and they pointed me to a bus which would take me where I was going.    I got on a bus, got off and then proceeded to navigate the hospital.  No it wasn’t a 19b but it was going where I wanted it to!

So I tweeted to Reading buses:

The hospital

The letter says:  Main x-ray department…..  so I follow signs up to the second floor (this is a weirdly set out hospital believe me) only to realise that it isn’t the right place.  So I look at the letter again and further down it reads ‘the Mammography department is on the the first floor’  So it is the Main X-ray department in the Radiography department!!!!      How many MAIN X-RAY DEPARTMENTS have they got for goodness sake!

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What I want is a bullet pointed ‘letter’ that has roughly these bits of information on:

A Heading With Appointment DATE and TIME

  • Department name  e.g.  Radiography – Mammography,
    • Main X-ray of Radiography department
  • Detail of how to contact the department if need to cancel or change appointment – with Telephone number etc.
  • Instructions:  Arrive 15 mins early for whatever reason
  • Do I need to bring anything with me?  No
  • What to wear:   You will need to remove your top.
  • How long will this take:   15 mins
  • When will I get the results:   Result will be sent to your GP/consultant may be able to talk to you at the time of the appointment.
  • And whatever else is necessary for the appointment……

How to get to the hospital:   A separate piece of paper showing:

  1. bus services
  2. small immediate road map
  3. parking
  4. Bus service numbers and stops outside of hospital
  5. Map of Hospital Departments

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I find it hard to wade through all the words of a letter these days.  I am only really interested in the information that I need.  I do believe that this is not just about dementia because there must be other people who struggle to read standard letters that have too many superfluous words on.   This is something I will take to my DEEP – Empowerment Group I think.

By the way, the staff in the hospital and are lovely even though every one of them had absolutely freezing cold hands!   They could do with a small hand warmer in every room.