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

 

When the S**t hits the fan…

..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.

 

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!!

 

 

 

 

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.

 

 

 

 

Living in Pain and not remembering why

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Living with dementia can be strange because you don’t always feel like there is anything wrong with you.  In the early days, you know that there is something ‘not quite right’ with you but you can’t always put your finger on it.

I don’t feel like I am any different to any person over 60 whose behaviour and memory is starting to get a little wonky, but in reality, there are things that are creeping up  that I am not comfortable with about what is happening to me.

I keep forgetting what it means to live with Fibromyalgia.   I live with pain 24 hours a day, 365 days a year, in my feet, wrists, hands, knees, back – hell everywhere really.   So when my fibromyalgia is flaring up and I am so debilitated by the pain and fatigue, I should not wonder what on earth is wrong with me.    I toddle off the the Doctor’s to find out why my finger is so swollen stiff and excruciatingly painful with a lump on the joint (which later disappeared).  At the same time I tell him my glands hurt, my eyes are sore, it is uncomfortable to breathe and I am in so much pain I can’t get out of the chair.  I sleep for hours because I feel so ill, but I can’t sleep at night because the pain is so bad.

I have some blood tests done, even though he says he thinks it is just my fibromyalgia……..I go home and feel a fool.  How did I not remember how ill my Fibro flare ups make me.  Now I feel so guilty that I am beginning to recognising that this is happening every time it is at its worst.   I simply forget how ill it makes me.

I think this is to do with my dementia.  Yes, I function fabulously day to day, but living on my own has its drawbacks.    This is one of them, having no-one to suggest to you that this is simply a Fibro flare up, and can I remember how it was having the last one?   How bad it got, how ill I was.   No cooking, cleaning, in fact daily living just stopped because I was not able to do anything.  ‘Fibro Fog’ meant I felt more confused and forgetful than usual.

When these times arise and I am sitting amongst the mess of my home, living off quick snack type foods, too exhausted to wash, I look at whether my dementia has worsened.  I think I am less able to be spontaneous than I have always been.  I find it harder to ‘sort’ things out and it takes me more time than it should.   There are times when I think ‘why didn’t I think of that?’ when something obvious has been pointed out.   I feel like I am forgetting a lot of things that I have learnt.  Recipes I have cooked forever, people’s names, places, things in my past.  However, having dementia means I always adapt and not worry – try not to sweat the small stuff.

So, right now I am in so much pain without any painkillers that will touch it, waiting for it to dissipate enough to function normally again and somehow I need to make myself a reminder to understand the next time this happens that the possibility that it is my Fibromyalgia and to wait but what happens when I can no longer understand what is happening?

Quandaries and solutions

Life goes on with its ups and downs and you think, ‘I really must write my blog‘.  But then you think ‘I better not write that‘.   I know that many of you know what I am talking about because it is that moment when you have an urge to share something very close to you but worry that it will cause a problem if others read it.  But how to let people know how everyday things affect you otherwise.

For me, living with Alzheimer’s (ALZ), there are things I want to just write because I am at a very early stage still and it may be of use to people knowing even at this stage how it affects me.    So, what do I do?  My blog is not anonymous in the sense that it has a name, not a random couple of words.  Maybe that was my mistake, maybe I should have made it more anonymous. I could have called it something like – ‘Missing A Marble‘ perhaps.   I guess it would not have made much difference apart from not being seen as a real person.

There are lots of things that go on in my life where my ALZ or dementia affects me but only in the slightest way.  In ways that would make me question why it affects me that way in particular.   The type of wondering that lingers in a corner of your mind knowing that you can’t quite put your finger on why you should react that way.

For a while, I have been under some stress at specific times.    To all people living with dementia, stress is awful but then stress is awful to everyone you could argue.  Why is stress worse for me?  When someone is shouting at you and you have no way out, it can make your dementia feel worse.   Most people can shout back, hold their own, and stop abuse towards them, and of course, there are many who simply can’t.  But, what if you have always been able to deal with angry people and suddenly you can’t?  You find yourself trying to diffuse a situation where someone is shouting in your face about nothing in particular, maybe most would find it difficult to do.   Not me, I trained three years as a counsellor, I understand how to diffuse situations, can read the body language, can see past the abuse that is vomiting from someone’s mouth.

Now, though as I draw on all my knowledge and experience, all I can come up with is – “la la la la la la” as loud as I can!   Worked, but even I realised that it was a bizarre thing to be singing at a time when another person is at their most aggressive.

Next time is different, I can’t cope with being shouted at.  The red face thrust at me as the mouth is opening and closing with the most absurd ridiculous noise emanating from it.  I start shaking and crying as I call the police…..

I have Alzheimer’s, I don’t need this. Nobody needs this.  But, I, cannot cope with it.  They should not be abusing me this way knowing I have dementia.

This is what families can do to each other.

But,

I strike back.   I will not be overlooked, patted on the head and accused of being “unstable“.  I will show you how capable I am.  How I can still organise charities to pick up furniture, quotes for house clearance, create timelines, communicate with solicitors, get things moving.  Not because I want you to see me being capable, but simply because I have the time and I can do it.