Bizarrely I have developed an obsession with counting fingers and toes. I know a bit weird eh! It’s just that when I see a picture of people or animals hand or feet, they look like they have far too many digits on them! This is only when I see pictures mind you, not real hands or feet, or I don’t think so…no, I don’t usually focus on peoples hands..but I do focus on cats paws now I come to think it!
What is this about eh? I can’t just think ‘that’s a nice ordinary looking pair of feet’ , I actually have to count the toes, or fingers.
Some might say, what a load of rubbish, what has this got to do with Dementia. Answer, probably nothing, I have no idea. I do know that I have not spent my life counting fingers and toes and this is new to me, this compulsion. Why I thought to write about it was because it made me think of fiddle blankets.
It makes me wonder whether the change in the brain that makes some people with dementia more comfortable with keeping their hands busy with buttons and ribbons and the such like has any link to me needing to confirm that what I am seeing (fingers and toes) is just fooling me into thinking there are more. Okay I understand that it could be more to do with anxiety but that’s not how it feels to me. I don’t feel anxious about it, just curious about the illusion that I am seeing more than what is real.
So, I still have no idea why this has become something of a ‘thing’ for me right now but I think I might make myself a fiddle blanket for my future and maybe put some fingers and toes on it to count!!
Dementia is more complex than most people realise.
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.
Simons Cat does it best….
..Turn the fan off..and…what next?
Okay, I have been hiding a bit of a trauma from you all. I moved, you know that. I have a lovely little bungalow that needs updating. Late November I got a quote from a builder to replace my back boiler from the fireplace with a new combi boiler siting it in the attic space. Rip out my bathroom and replace it with a shower and a vanity unit across the end wall. Along with some other things to do with the radiators, flooring, skirting boards etc.. Boiler replaced. Bathroom ripped out………………………………………………………….
They start 3rd December and I returned home on the 27th to find the brick sized tiles I requested for the shower now – 6″ x 8″. The shower tray the height of 19″, no problem because they will build a step up to it.
The end wall vanity unit now – a cloak room sized sink with a small cupboard underneath and a small toilet suitable for a cloakroom.
Then: No work, nothing. I have been conned. I am left with no money and no bathroom. Before you ask, of course I knew what I should and shouldn’t have done, but I have dementia, I live on my own and still make stupid and bad judgements. The builder tells me he is going into liquidation (with my money).
I cried for a whole day and night, then stopped because it doesn’t help me solve it. I feel so alone in trying to sort this out right now but I am not downhearted because it is not the end of the world really is it? The provision for support for people with dementia here in the North East of England is quite frankly non-existant, so there is no one for me to phone and say I just need some support through this.
So, I phoned the Citizens Advise Bureau Consumer Dept and they gave me advice in what to do next. I have sent a legal letter giving them 7 working days to complete my building works (I think that this is enough in the circumstances) which they have received. Next Wednesday I have to get some money together and start the process of taking them to Small Claims Court to get my money back or try to at least.
I have just had a quote to complete the shower so that I can wash properly which is reasonable at around £500 to include parts and labour. At the moment I haven’t quite got that so will be saving in the next month or so to get it done. The rest of the bathroom work will have to wait.
Dementia: When my Doctors tell me that it doesn’t really affect me much yet I will beg to differ. I believe that my judgement is very poor now. I have been thinking about this and wonder if it is to do with being unable to read peoples faces and voices, or negotiate in my mind whether the words people say to me add up or not. How do people make a judgement on whether to trust something or someone? I guess it can be a combination of things, including experience, how they look, or sound, that is greatly diminished for me these days. But, that doesn’t mean I will make the same mistake twice!!
For now, I have turned the fan off. I will deal with it day by day without worrying too much because right now there is absolutely nothing I can do to change it.
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!!
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.
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 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!
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:
- bus services
- small immediate road map
- Bus service numbers and stops outside of hospital
- Map of Hospital Departments
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.