Dementia: a disability?

I have recently seen a question that asks if you consider yourself being disabled living with dementia.   I think this is a really interesting question.

One of the meanings as in the English Oxford dictionary is:

Disabled:  1(of a person) having a physical or mental condition that limits their movements, senses, or activitieshashtag person not disability

Do I consider myself having a disability?  Yes I do have a disability because I am now limited but not restricted in what I do.  But the whole question of whether living with dementia is a disability is another question all together.  Some would argue no, because it is a life limiting disease not a lifelong disease, but even that argument does not stand up, because there are other diseases such as MS (Multiple Sclerosis), or Anxiety and Depression that can be equally life limiting.

I think the difficulties lay with getting a diagnosis in the first place.  Do you have a disability only when you have a diagnosis?   It would seem so.  Which brings me back to Dementia.  Speaking for myself, I consider it to be a disability because I can no longer carry out my everyday life in the way I used to, mainly because my mental capacity to organise things is diminishing.   Physically my body is not working like it should either as the signals and messages from my brain are getting more foggy.   Mentally, I can go into a ‘meltdown’ where I need to shut down in peace and quiet, alone, when things get too much to process.   So yes, I would consider myself to have a disability.

 

As I have said before I have two disabilities, but Dementia can mean the other is overlooked.  Fibromyalgia for me means living with constant pain restricting my physical abilities.  During a ‘flare up’  the pain and exhaustion is so intense throughout my body that I do very little other than sleep.  Fibro ‘fog’ melds with dementia to shut me down for a week or however long it is.   However, I may not tell anyone around me that I am in more pain than usual because I live with it dailyinvisible_disability_stickers-r449f8209b2e24f9e99cbbfda6d03ece2_v9i40_8byvr_324

Does this stop me doing things?   It slows me down certainly, but you can adjust your life to cope with it as much as you can.  Disability is a noun and identifies what hinders me, but does not stop me.

Disability is a word to bear in mind only, for each and every person has their own abilities or disabilities.

As per usual, these are my views alone and are not necessarily definitive information.

Crash…

That’s what I am talking about.  Last night the pain started.spikes1There is no position to sit with my legs to stop the pain, the burning of my knees, the deep screaming pain creeping with long spiky fingers along my leg muscles, shoulders, arms, wrists…..

And crash….the intense exhaustion that pushes me down.  Fibromyalgia.  I can never forget that I have it, but I do ignore it on the whole.   When the flare up comes and crashes me down there is no ignoring the invasion of torture surging around my body.   Blooming dramatic eh!   Anybody with Fibro or CFS or ME with tell you there is no drama about it, it’s ridiculously real.  Fibro Fog, heard of it?  Same with CFS – the foggy confusion turning your brain thoughts into a mush.   Well Mr. Nasty Fibro, Ive got Alzheimer’s you can’t get one over on me!   I have strategies, and things in place for the likes of you.

Living with dementia and coping with another disability is all about managing it.   I don’t take any medication for my Fibromyalgia.  Yes, that’s right, zilch, nada, none.    I have tried the usual Amytriptaline, Pregabalin and codeine etc, but each one has side effects.  I have already talked about this before but it doesn’t hurt to go over it.

Anything that makes my dementia ‘worse’, such as the dullness of thought, confusion, woolly headedness is not something I want to mess about with.   The medication for Fibro ‘wiped’ me out and I could not function.  Of course I know that with time they can get better, but I don’t want to risk losing any function for however length of time.  This is my choice.   I once had an intravenous infusion of Lidocaine and Oh my word it was the best thing ever.  ALL PAIN GONE after a few days.  I could walk more, I had energy, I could be NORMAL.   It lasted just under 5 weeks and then C R A S H  the pain returned.  Not just returned but with avengance.

To maintain this pain free normal life existence I would have to receive this infusion once every 4-5 weeks at hospital during over a couple of hours.  Not just me.  It doesn’t work for everyone but it did for me.  The sad part is that it is not available because of funding, I was lucky to have that one time funded.    One thing that came out of it was that I realised that without taking medication, my pain is maintained on a relatively even keel.  I have flare ups, like now, but they are never as bad as I hear some people because I live with the same amount of pain all the time.  No real relief but no mega crashes either.  I just have my normal bad crashes which I have learnt to manage.

As with my dementia I do what I can when I can, and when I can’t I rest.  I will cancel things if necessary and just stay at home, gently walking about when I can, sleeping a lot, and taking care of myself.   I will sit and sew if my wrists will allow me to, or ‘sleep’ through films on tv.dtcokxbxcaemejt

Having dementia and a co morbidity is just a case of looking how to manage both, in a relaxed and mentally chilled way, accepting what you can do, when you can do it, and riding the storm!

As always these are just my thoughts and opinions for what its worth 🙂

 

 

Diary thoughts with dementia

Sometime life feels like it’s in limbo.  Waiting for something.  Thinking I should always be active and not sitting alone quietly sewing or enjoying a film on TV.   Waiting for time..to what..pass?  I don’t know, maybe this is just how dementia feels like?    Does it feel unhappy?  Nope.  It just is how it is.

Sometimes when I have a diary full of meetings, and events, I just roll with whatever that day brings without feeling I have had any input into organising it but have simply turned up and been a small part of it.    A big hand that fills my diary and hands it back to me smiling.  “This.  This is how you will fill your time in a pleasant and meaningful manner“.  I smile as I take the diary and look with curiosity to see what pleasures I have for the coming week.

Then there is the ‘To Do’ lists I have written down on the righthand page of my Moleskine Diary.   This, however, gives me a hidden creeping fear, no not fear; anxiety, yes that’s it. Anxiety.  I have agreed to do this thing, and now I am scared that I cannot carry it out or finish it, or even start it.  Always in my head ‘I can do that’ , until the time comes to start it and then the dementia reality sets in.  The hesitation of indecision, the confusion of my own instructions where everything falls apart.  Followed by the quiet talking to myself – “I can do this, step by step.  Don’t overthink it“.  Then I when I finally start I am more confident to say whether I can do it, or whether to say I tried but it is now beyond my capabilities.   Admitting when you can no longer do things can free you up to do more of the things that you CAN do.

So, in reality I have a mixture of a Diary life, and my chill out self preservation life.  I attend meetings, give talks about my dementia, am part of a group working towards making my local town dementia friendly.  Then I have my withdrawal from the world life where I stay at home, alone, enjoying my own company, doing a bit of housework, and a bit of craftwork.  But, I also have my craft workshops for dementia in my diary that I attend and love because it gives me inspiration, gives me a place to be with other inspiring people living with dementia.

 

 

#Happy New Year

New Year’s Eve.

I always like to sweep away the old year and start a new year afresh.  I believe everyone should.  I don’t mean discard everything from the old year, I mean that each year is fresh and there is an excitement to what you can achieve.  Mentally dismissing the old and positively actively seeking the new.

What I am talking about is seeking out all the positive of things each day brings, each new experience to make the most of every day.  Sounds pretty corny right?   So, I don’t care.   It takes a lot of work staying positive but brings its own rewards.

Last year brought new challenges, my vision has changed, I think my Alzheimer’s has progressed in different ways.  My long vision has become blurred, with ‘holes’ but there is nothing wrong with my eyes.  My taste has changed, or rather I find it hard to enjoy the taste of food and drink because they have become bland.  I have constantly weird dreams involving all the people I have known in them, and where I am constantly getting lost.  Night after night my sleep is disturbed by these dreams, but this is what dementia can be like.  Thankfully they are not nightmares and are weirdly interesting.

My memory is worse than it has been with lots more blanks.  I get more confused, more upset about silly things, but always try and bounce back.  Be Positive.

So 2019 I will be remaining positive, with some good times ahead making the most of enjoying my life, my friends and my family.

I wish all my friends around the world a positive and rewarding 2019.

 

A Dr failing to understand Dementia, and the risk that poses

I had a disturbing appointment at my GP on Monday, one which I can’t quite get out of my mind.

I had a letter giving me an appointment for a “Medication Review”, okay, so this is just a review no need for my daughter to come with me.

I get into the Doctors surgery to be told this is a Dementia Review.  That is not what the letter says, I think but hey ho I have never yet had one of these before so I will go with it.

Dr C reads directly from the screen and I answer his questions.  They are short and succinct and not very useful to anyone really.

Dr C:   Do you have a carer?   Me: No     Dr C, mumbling to self ‘Oh there is not a box on here for not having a carer’       Failing number one, he knows me and understands I live alone and manage well.   Not all people with Dementia need carers for quite a while.

Dr C:  (he talks about this being a difficult question) Have you thought about an Advanced Directive, and DNR (Do Not Resuscitate) and have you got one?

Me:  Yes I have thought about it and I want DNR when the time comes, and I haven’t done one yet.

Dr. C gets a form out and starts filling in, ‘We can fill one in now’.  I answer general questions and he says that as my Daughter isn’t with me she will need to sign it, after I told him we had talked about it.

Here it comes…………..

Me:  Obviously I don’t want that now because I am fine.

Dr. C:  “This is an Advanced Directive for the future”

Me:  Yes, but I am not likely to have a heart attack now, my heart is healthy.  [I have recently had a heart scan and an angiogram and have been told my arteries are healthy and my heart].   And, I am capable of leading a perfectly happy life-style now. So not yet.

Dr. C:  This Advanced Directive is for the future 

He repeats this several times, and I am saying yes but not yet.  Then Dr. C says ‘maybe we can look at this on a yearly basis then’ and rips the form in half and places in the bin.

I am mortified.  I am more than that.  What just happened here?   This GP was suggesting, and filling out a form so that I would not be resuscitated should I need be in the near future, in fact it could have been next month even.  I have no intention of doing this until the time is right when my dementia is advancing rapidly.

What is scary, this GP appears to have no idea about Dementia at all.  The more I think of it I am very concerned that Dr. C could be a danger to patients.    How can this be happening today when there is more knowledge about Dementia than ever.  I realise now that even though when I ask him to explain things because of my dementia he just doesn’t get it.  He will just say the exact same sentence, so that I have even told him that repeating himself doesn’t mean I will understand any better!

I am changing Doctors rapidly because what if, that form had not been torn up and I was taken ill next week and needed resuscitation?  Obviously this is not the only reason, there are others that are equally worrying.

 

 

A new Dementia Arts group

Oh I have been busy recently.  From the initial funding and group set East Durham Creates of Silk Painting for people and carers of dementia, additional funding has been found to continue the group which we are now calling Making Art Time.  I say funding was ‘found’ but it is never as simple as that is it, Nicola from The Barn at Easington has been the most wonderful advocate for our group and she sourced the funding for us.  Her hands on approach to art is amazing and addictive and we have been immersing ourselves in creating from nature.   With walking in the Dene (woods) collecting leaves, berries and anything that takes our eye, reading poetry whilst sitting on fallen trees, we have embraced natures peace in our dementia journey.  

For me it’s quite spiritual being in a wood in autumn when the leaves are a mass of reds, golden with a variety of browns and greens.  There is a wonderful silence that you can only experience in a wood or forest, with occasional natural sounds of cracking, shuffling and a bird or two singing.

One day we created shapes and pattens on the floor of the wood amongst the trees using moss, logs and leaves; skewered coloured fallen leaves on broken twigs and hung them amongst the brown branches.  

It felt like being a child again.

In January our group is creating a wall banner of mixed media, representative of the group.  

The most important thing is that I love going to this group.  It is not noisy in the sense that it could be overwhelming.  We talk, laugh, exchange thoughts, ideas and most of all we understand each other.  It is comfortable to be amongst company who may need to ask what day it is, or what we did last week, or who is picking us up.   

 

One of my last rose heads, with sea glass leaves and seeds arranged and preserved in a layer of bees wax.
An arrangement of wax dipped autumn leaves and berries collected from woods, with a pigeon feather.  Mounted on a round slice of branch originally used as a prayer message (written on underside) from local church.

An arrangement of wax dipped autumn leaves and berries collected from woods, with a pigeon feather.   Mounted on a round slice of branch originally used as a prayer message (written on underside) from local church.


This is a piece of textile are that I have done at home.  It is a leaf hand sewn onto hand dyed cotton.
Needle weaving to complete damaged edges on the leaf. Seed stitch around edge, with a two spot ladybird.   It represents my dementia with the holes in the leaf repaired. The seeds around are memories which are scattering but not yet gone.

Getting involved

So, an update of being involved in Dementia action.

I am loving my new community, and who knew that the North East of England was so pro-active towards becoming Dementia friendly.   Not just pro-active but mega pro-active and I am loving being able to join and be part of it.

I have been very much welcomed by all I meet, and am excited for my future here to be able to be so involved.

Sunderland and Durham Heritage Coast:  I have already been to Crimdon Beach (which is absolutely beautiful and an important area for wildlife especially the Little Tern which come to breed there.  I have agreed (without any hesitation) to work with them helping make this part of the East Coast dementia friendly.

East Durham Area Action Partnership (AAP) –  I accompanied Belinda from the Alzheimer’s Society to a meeting where she did a presentation about the progression of dementia friendly East Durham.   I spoke about having moved to the area and how I was struck by the real sense of northern community and how it was important to encourage families caring for people with dementia to continue to make life as normal as possible and visit all of the places that are working hard to become dementia friendly.

Last week I visited Horden Welfare Park Vintage Cafe.

 This park has history to it and the park itself is a real gem to visit.   Originally paid for by the miners in the 1920’s it has one of Ray Lonsdales scultures called ‘Marra’ and depicts a miner after the pits were closed with his heart ripped out.  The cafe which is inside the park, put on afternoon tea and a walk around the park with a talk of its history.  Staffed by volunteers it is delightful, china teapots, cups and saucers, plates and delicious cakes and sandwiches on vintage cake stands.

A vintage cake stand

Me, being gluten free and not letting them know before hand, wasn’t able to eat any, however, they made me a salad not taking no for an answer!  How lovely of them and it was delicious too.

Upstairs they have created a small museum of Horden which is absolutely fascinating.  They have created a couple of rooms with furniture showing life in the miners cottages.  And the photograph collection they have is immense.

These are the local places which are making real efforts to become dementia friendly and will become a superb place for afternoon tea and a walk.

As I am working with these groups and getting to know the area the more I see how much there is to educate the community of families who have always cared for each other.  It is so easier for a family to do everything for someone and in that way they lose their independence and in a sense, their self.   Education about how important it is to continue to help a person living with dementia to keep doing as much as they can has to be the way to improve dementia friendly communities.   Take the person out for an afternoon locally many places and cafes are dementia friendly and a walk a cup of tea can brighten up everybody.  Find groups that someone with dementia can go to independently so that they get the chance to do things for themselves.

I think at some point I will give my take on carers another time and how helping their people to join more things and get out and about can actually help them as well.

Remember, as always these are my own thoughts and opinions.

🙂