Staying proactive when all you want to do is sleep!

I have been busily trying to put together some pieces for a Dementia Friends working session I am doing with Rowena from the Alzheimer’s Society on Monday.  This is with Social Worker students at Durham University.

I always enjoy these Dementia working sessions as it gives me a voice and hopefully I can help towards making a difference for people living with Dementia if it gives a better understanding.

However, for the past few months I have felt so exhausted all the time and it has got to the stage where I am sometimes too exhausted to even shower in the mornings and when I do I have to rest afterwords.  I have Fibromyalgia so am already in constant pain, 24 hours a day 7 days a week…  and as I have previously said I don’t take any medication because of the side effects all of the medication.  At present I spend a lot of my days sleeping which is a tad non productive personally, but I just can’t stay awake!extreme-fatigue-contentPreviously putting together a talk about dementia for me has been relatively easy, because once I start writing I can’t stop as my head can go at a hundred miles per hour,  but lately the physical and mental effort of trying to think is so draining I am really struggling.  I don’t want this to be the end of my work, but I think I will have to reassess what I am able to do for the foreseeable future which is gutting.

So today I need to finish off what I have put together so far for one talk, and re-vamp another already written to suit.  I am not sure that I will be able to fill all the time allotted to me but will have to be content that I have done my best and not feel that I am letting anyone down too much.

Will let you know how how it goes.    Also Doctors on Wednesday for the results of a blood test, but have been told to look up Chronic Fatigue Syndrome (CFS) and see if my symptoms match.   What can I say, sometimes life kicks you when you’re down and you just have to find a way round to get up again.

Thanks for reading  🙂

 

Dementia Friends sessions in schools

images-12

Today I went along with a Dementia Champion to a Primary School where I live to deliver a Dementia Friends session.

Oh my word, I was absolutely blown away with the comments the children made when asked questions.    Questions such as ‘when memories have gone from recent events, what is left?’   The number of children who said ‘feelings’ was amazing.

They simply get it.  You can see their minds working and understanding what they are listening to.   They sit quietly, and listen, they write their ideas on what the brain ‘does’ on the brain pictures we give them.    At 10 years old they try and think about what memories someone of 70 has.   How difficult is that when you have only lived for 10 short years?   Things like ‘losing your husband’,  and becoming a grandparent.

I am so hopeful for the future when I see and hear the compassion and understanding of children today.  They are our future, they are the people who will perhaps be caring for their parents one day.

I am simply in awe of the pupils today of Westlea Primary School in Seaham, County Durham.  This is the second time I have been part of Dementia Friends Sessions in schools and I can’t wait to be part of more.

More importantly how wonderful is it that schools are so willing to be involve in becoming part of a Dementia Friendly Community.   A lot of adults could learn something from their children I think.

At the end of April I will undertake my own Dementia Champion training so that I am able to take Dementia Friends Session as well and I look forward to that.

🙂

 

 

Dementia Friendly Communities

Been just as busy February as January.   Last week I spoke at the launch of Blackhall and Hesleden Dementia Friendly Community.   Since our own launch of Dementia Friendly Seaham things have been moving along nicely.   But boy, these things take work, and time and commitment.

What does it mean to launch a dementia friendly community?   Look around your own community and see if there are any stickers on shop doors that indicate that staff have taken part in Dementia Friends Sessions.  How many do you see?   The large supermarket, does that have a dementia/disability friendly slow checkout lane?   What about cafes?  Your local library, council offices, your GP Surgeries?  What sort of groups are available; support for carers, peer groups, and activities, are in your local area?  Where do you think you would find out information telling you what there is?

Out of all of the members of our working group there are, effectively, only two of us doing anything.  Working groups, should be that, not just meetings where we discuss and others ‘do’.     However, there will always be people to want to make a difference and do put their time into making a change.  Equally there will be people who can network locally which is just as important.

My talks are becoming slightly more hard hitting, so that I am prepared to say that I am still waiting to meet more people like myself in my area.  Where are the people living with dementia I ask?  Why am I the only person able to speak at these events.  Reaching people in your own community living with dementia is not easy when you have no provision in place to sign post after diagnosis to support that does not yet exist.

My area with the aid of the Alzheimer’s Society have made wonderful strides towards looking at how we can be more inclusive to all.  There are a core of people that I meet at these events who are fabulous and work extremely hard at promoting change.   What I would now like to see is the general public supporting us.   I am touched when people come to speak to me at events telling me how brave I am to speak out, but I don’t feel brave, I am not brave.  I just have a desire to make things better for myself, and for the other people living with dementia in my area.  I just want to be able to have the choice of different groups I can attend or get involved with.  I don’t want to be sitting at home whilst my Alzheimer’s progresses and have no art group to go to, or anything similar.

When I am at home I am scared.  I feel dread at having to think and write a talk for the next event.  Maybe this is my dementia making me shrink back in stepping forward.  Part of me longs for someone else to take over but then I know I will never be able to step back and not get involved.   There is a wonderful core of people who are working hard, but I want to be a voice for dementia because I live with it, they don’t.

It is hard work for me to do these things on my own at home, the will is there but I have to admit to struggling to follow through sometimes.  I am finding that I can no longer organise things that need to be done ‘just like that’.

Days when my Fibromyalgia is flaring and I am wracked with pain making it harder, and now it is possible that I also have Chronic Fatigue Syndrome which is pants quite frankly!  I have to pace myself so that I can do one major thing per week with the Alzheimer’s Society, attend Art Group, my Knit n Natter group, then sleep the rest of the week.

I find it harder to get things sorted out at home these days, the small damp patch that needs doing before the walls can be painted, and the skimming of the ceiling too.    I need to find someone to help me dig the garden over, re-fence…….   Why can’t I just do these things?  I don’t know why, all I know is that I feel scared to do any of it.  It doesn’t make sense.  Once I have forced myself to do it I am relieved.  It almost feels phobic.   How I wish I had someone who could actually sit and do these things for me, or with me.  I am understanding that it may be time to de-clutter massively ready for when I progress.  Time to get a cleaner to help me keep my home clean and tidy.

In the meantime I will continue amidst the constant exhaustion, to give a voice for dementia when I can.26992176_1933561930010577_3170965173589389220_n

 

 

 

 

 

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.

 

 

Dementia and a visit to the Doctor

Having dementia means I now have to push myself to do things, but recognise when I need to step back and say that’s just too much.   Am now having some tests done for Angina, which has stunted my physical activity for the present.   I just hate it when my body throws me a new problems to deal with.
This has been a long standing problem, and 16 months ago was diagnosed with asthma which may have been incorrect.   I realise that I find it extremely difficult to explain symptoms when visiting my Doctor so have recently been taking my daughter with me.  She tells me I give too much information which can confuse things because they may not be relevant.  It is that difficulty, to sift out what should be said and what is not relevant that eludes me at present.  I need to plan out what exactly I will say when I go to stop overloading my Dr with information!!
It is a help to take my daughter though because my Doctor keeps asking “how long..” and I have to answer, “I can’t tell you because my sense of time has completely gone”.  Still he asks that question, so my daughter steps in and says what she knows.  So, it is a lot less stressful to have someone who is close to you at an appointment.
Being able to be concise is something that gets more difficult with dementia, and not being able to describe something is a real problem.  Think about when you have a pain, how does it hurt?   ache; sharp; sore….it can be more difficult to describe when you have dementia.
Also, I may have a pain but unless the Doctor asks me if I have a pain, I have a tendency not to say.  Why? I don’t know, I just don’t.   My ability to offer the relevant information is sometimes lacking.
I think one problem is that I hate going to the GP Surgery.  I really don’t like having to take medication, although I will if I have to.   So when I do go, I may have a couple of things that have been niggling me a while and Doctors these days only like you to talk about one thing during one appointment.   The way my mind works is that most ‘illnesses’ have more than one symptom so if you can’t give a list of symptoms how can a doctor diagnose you correctly?   I get breathless, my inhalers don’t work, when I get breathless I keep losing my voice totally.  It sort of feels uncomfortable in my chest/neck/throat.  My Dr tells me that he will deal with my loss of voice another time but what if it is connected.  What if I think that I can no longer tell them all of my symptoms because I think that it is too many?  I have fibromyalgia I am always in pain, so won’t say that I also have pain.  I get pain in my arms, my shoulders, even across my chest so I am now confused as to what pain belongs to what.
With my dementia I am beginning to feel I should make allowances for others not understanding the intricacies of my behaviour and speech, but actually I realise that I’m wrong, it is not me who should make allowances it is others who take these things into account.
Of course Doctors are trained to talk to people with dementia aren’t they?  Sadly it seems a many need training.   All the staff in Medical Centres should become Dementia Friends; have training.  What is missed or misdiagnosed I wonder because someone with Dementia cannot tell you or explain if they are feeling unwell?    Having said that, I know that there are some superb Medical Centres/Surgeries. Doctors and nurses around, but not in every areas of the country.

 

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.

🙂