Living with Dementia alone..support as well as education

I reached out to my online friends who live with dementia to ask about their thoughts, on being alone with dementia and caring for a family member with disabilities or mental health difficulties and the problems of finding physical/emotional support.  I found others in a similar position to me so I am going to have a bit of a rant if I may.

Here’s the thing, the pictures I see in charity leaflets, papers, online, TV etc., of someone with dementia generally do not give the appearance of PWD living alone without support.  Living with dementia can be equally as fulfilling as without it.  We have the capacity to make the most of our lives.   With support we can live a normal life.

With support……..bear with me here

Living alone doesn’t always mean ‘with family nearby‘ to support you.  What if, you have a child, an adult child, who has disabilities of some kind?   Autism, a physical disability, mental health difficulties that YOU support?   There can be love there in abundance.  The warmth and friendship of a parent and child that has grown over the years; what if they do not have the capacity to support you, but still needs you as their mother/father to make things okay for them?   I don’t know any parent who would not want to be there to support them whatever age if their child needs them.   The dilemma for me is that my child feels that they cannot burden me with their mental health problems.  That is like a needle piercing my heart to hear that, knowing that they feel that my dementia stops me being a parent.  With my own support, I could go to the moon and back for my child.  I could be that support, because I would not be alone in doing so.

I believe some charities were originally set up to offer support, correct me if I am wrong.  Choose any charity – they offered support by reaching out to the people who needed them.  Listened to people face to face, and showing people they were not alone and they mattered.  Supported physically, by chatting, having a cup of tea together and made them feel that they could do things.

Education is the key word these days so that most of the charities that work for Dementia is about awareness now.  They have ploughed their funding into focussing on education.  There is a great element that works to help communities to be dementia friendly but there is a massive hole now in befriending help.  Finding a scheme that can offer a befriender/support to sit and chat to is impossible.

Where do they think we all go to get support when life is tough, when we are struggling really hard to cope with our own dementia and support our family at the same time?  Who do they think we talk to, to get support with it?  Giving out phone numbers for this agency or that agency, who only tell you that ‘it is not what they do‘ just sucks!  Or suggesting that if you live on your own get to know your neighbours to fill that role.   I am not sure that is so easy these days, especially when you have moved to a new area.  Do you want your neighbours to know ALL of your family problems?   If they are personal friends of yours they probably will anyway, but I am not sure if the suggestion means you should use them as support that way.

There are many people living with dementia, who live alone, without any family nearby, who are the main support for children (or other family members) with severe problems.

Whilst I am on support, I still have no bathroom- thats nearly 5 months now.  Social services stood in my near empty bathroom a couple of weeks ago and said..

“We usually come and look to see how we can make adjustments for you, but you have no bathroom so there is nothing we can do”

They gave me a leaflet to apply for a grant that may be given toward getting one.   I have phoned three people to get a quote….and not one has given me one.  Why?   Oh it would be so so good to be able to have some support to ask me ‘how’s it going?’  Spur me on to get another quote, or another and chase them up.  In the meantime my child is having a mental breakdown, I do what I can, we speak every day, I try and help sort out finances – yes me! who struggles with her own stuff.  (Funny how it is always easier to sort out someone else’s than your own).  I relish doing this for them, I love them dearly and would go to the ends of the earth for them..I just need some support.  Someone to talk to face to face.

All you charities out there supporting people with Dementia I say to you – Please please keep offering befriending services, not just education.

Thank you all, rant over.

 

 

Cat cuddling…

I am in great need of cat cuddling this morning because I am falling into a black pit of  despair.   I cannot stop the tears leaking from my eyes so am smiling.  Did you know smiling increases the ability to lift your spirits through….lets just say the effect of smiling has in the brain lifts moods.   Is it working?  Not really although I realise I look somewhat mad smiling through tears hold tight to my cat, who is loving it.  She loves a good cuddle and her ‘motor’ is running on full right now – yes even whilst I am typing this, tucked under my arm her paws on my laptop.

This morning I am realising the enormity of my situation.  No bathroom and I can’t find any practical help.   The well meaning questions of have you contacted…such and such is not really helping.   15 years ago I wouldn’t be in this position, I would never have given my money over to a builder before they had at least done a good deal of work.   But, having dementia means that your brain is seriously compromised.  Just because I look and sound fine, well more than fine really, the hidden part of what dementia does to you is missed.   Like how can you tell if someone is telling you the truth or not?  How can you tell if what someone is saying is ‘joke’ and not meant to be taken seriously, how can you tell if someone is conning you or not?    I can’t and it quite frankly terrifies the pants off me because you need these skills to make every day decisions.

So what I want is practical help.  Someone who can do some hand-holding through what I need to do next.  Someone who knows what to do and why it needs doing.     People keep saying about how this organisation or that have given them practical help so I want to know ‘how did you get that help’?    Here I am, no money, no bathroom and I cannot find anyone who does anything other than say you need to do this or phone this agency.  Age UK don’t offer help apparently so they tell me, Citizens Advice Bureau offer advice, Alzheimer’s Society…don’t get me started on that one.   So, what I need to know is WHO can give me some practical help of what to do?

Most of these charities, have now stopped giving practical help and have chosen to focus on advice.  Well, advice to a single person who is trying to sort something out alone is  absolutely worthless when they have dementia.  What we need is someone to sit with us and ‘walk’ us through what to do, perhaps give some help on that, stage by stage.  Give support, practical support.  Someone to tell you “it’s okay we will sort it out”.    

I hate dementia.

Going back to cuddling the cat.

Rant over.

Simons Cat does it best….simons-cat-channel-frederator-network

 

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

where to catch image WEB

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.