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.

 

 

Dementia and the sometimes silence of my world

I was talking to Social Services the other day and was struck by how I lost my words.  This is not usually me, I can talk for England but this particular day I was really struggling, and realised that it was not an isolated day.

My brain registered this new ‘mini demise’ with curiosity.  Hmm, is my dementia progressing more than I perceive it to be doing?   I am comfortable analysing myself and what is happening this way more than worrying about what is happening.  If I was at a desk studying myself I could write it down and make a graph of very slow decline.  But, a decline nonetheless.

What does this say about me and my dementia?  Well, for a start it says my emotions seem somewhat unconnected with my situation.  Maybe fear of living alone and progressing without a certain future is what stops me from from associating with my illness, or maybe through dementia I am losing emotion.  It certainly is a coping strategy and one which works very well for me, thank you!

Oh yes, my dementia certainly has progressed a little.  I am simply unable to make rational or good judgements these days.  I can ask myself – should I dothis?’ or ‘that?‘ and the answer that appears is, ‘I don’t see why not‘.   And, that is a dangerous situation to be in.   How do you know who or what to trust when you have lost all manner of good judgement?  It’s all very well knowing what you should or shouldn’t do in a situation, but to stop yourself from making a bad judgement is virtually impossible when you have dementia and that part of you is broken.   Dementia makes all of us very vulnerable.

On the brink of getting involved in my local community for Alzheimers/Dementia awareness, I have missed the challenge of thinking about strategies and physical action of being involved.  Talking to other people on a different level, exercising my mind and it has had an effect I think.

I do have conversations with people, I have joined a local ladies club…which is probably not my sort of thing but I need to get out and meet people.  It is fun, there is a lot of chatting as people have lived in the town a while, cups of tea (people bring their own mugs, cakes and traditional meat and potato pie).  Bingo is played, and that is challenging for me!  I look at people playing five strips at a time and I struggling to keep up with three, but it is a place to go and mix.  They do not know I have dementia because I haven’t told them, I am not sure why.  I can’t say I look forward to going, but the mainly white haired ladies can be entertaining.

I don’t know if it is the same for others, but I realise I very much spend a lot of time within my own head.  Is it because I live alone and it can be a silent place to be?  I don’t mean by sound but by company, and if I had company I would probably long for the peace of my own space.  It is sometimes easier to withdrawer from the world than it is to pretend to be normal and I don’t know why I feel I have to.  Actually I think I do, the world hasn’t caught up with dementia being just another normal illness yet, and has no idea how to interact with it, especially in the North East of England where it is definitely not acknowledged yet.  There is some serious work to be done in educating people, services too; GP Surgeries or Psychiatrists/memory clinics do not appear to be dementia friendly, they have no idea yet….. The funds for this sort of thing falls far short in the North of England.  It is rural, but very family orientated so that people with dementia just remain in the family who have little knowledge of dementia.

Meanwhile I plod along, reading my books in my silent world, learning embroidery art, occasionally unpacking another box from moving and still trying to sort out my bathroom.

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Creating and sewing before my move.

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!!

 

 

 

 

January 2018: what it means living with dementia for me this month

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What is left out..

Moving to a new home and new GP surgery.  Moving Doctor’s surgeries is always fraught with problems of nobody knowing who you are, how you are, and your medical history.  Medication history has to include your doctors knowledge of you personally, especially when a new doctor can only read what has been written not what was left out.  So I see my new GP and talk to him about myself and my dementia.

I have always had my medication in a weekly blister pack given in four weekly lots.   So when my new blister pack is delivered there is a week at a time.  This means I have to be in my house every Thursday to receive a weeks dose of medication.  This is not acceptable to me to because it mean I cannot leave the house that day until the medication has been delivered.  I challenged this with the Surgery and the pharmacy and was told that the Doctor advised that I could only have one pack at a time – why?  Because I have Alzheimer’s.

What does this say about me?   1. I am incapable of taking my medication one pack at a time.  2.  My dementia is worse that it is.  3. My doctor has not listened to me or does not believe a word I say.

What does this say about the service in the area I live in now?  I have worked hard with my old local services to make things better for people with dementia.  It appears that in the north east of England the services fall way short of what they should do.  The disparity of quality of services across our country is abysmal quite frankly.  This is not about how much money a service has it is about how much training they have had in dementia awareness.

Incidentally, I had recently had an appointment with the Memory Clinic and the Psychiatrist (sadly) said that even the tests scoring are different from what I had been used to were not used, and that the service ‘here’ for younger people is poor.  I thank her for her candour.  I am no worse than my last tests, which means I am still very early on.  This for me is a relief to hear.  She left me with the usual that I will have the 6 monthly follow ups to see how I am doing, ‘sorry there is no support for you whatsoever’.

Hey ho, I can see that it may be an upward battle to get my GP up to date with how to include people with Dementia into surgery practises.

What is left out?  Knowing someone, putting down on paper that this person is capable of taking medication, they are at a very early stage and to treat this person as not yet needing the support of taking control of medication etc.

 

 

 

Finishing up 2017..

Heck that year just flew by.   One minute I had started 2017 then POW it was over!   I expect there are many of you thinking exactly the same with maybe:  Wasn’t that a great year, or thank goodness that is over!   For me it was thank goodness that is over for part of it, but also that was great for other parts.

I said I would tell you about my holiday first of all, although it seems a long time ago now.  We sailed from Copenhagen on the ship Serenade of the Seas, to Oslo then Kristiansand where I had so much fun on a   Sailing for two days to Reykjavik, a couple of days there, then on to Akureyri in Iceland.  Wonderful place!  Always wanted to visit Iceland and it did not disappoint.  Whale watching – what can I say!  Only two small boats at a time allowed in any area, we were suited up in red all-in-ones on the top of a small boat…and then we see the spray from a whale.  Oh oh I can picture it today as if I am there.   After seeing a couple of whales from a short distance there just beside us is a whale, so close I can see his eye.  Our guide is excited, this is a new whale he tells us, we have not seen this one before.  The whale circles us, coming up and diving down, it is so close to the boat.   The guide is talking on his radio telling of this new whale visiting the bay in Iceland.  There are no big splashes, just gentle rolls, and dives, it appears that this new whale is curious about the boat and is checking us out.  Our guide is just as excited as we are seeing a whale close up for the first time.   This is so unusual he says and I am bursting inside with wonder, awe, excitement and contentment.

One thing different about this holiday is that I stopped looking through a camera and took fewer pictures because you miss so much with a camera stuck to your face.  I took photos but it can never show the scale or the feeling standing there in the freezing weather seeing this awesome creature.

I loved Norway and want to go back, it is beautiful and there is so much to see.  I loved Iceland it is everything I thought it would be and it would be wonderful to see more of it.

From Iceland we spent four days at sea with 15′ swell of waves, thrilling! toward Canada.    Nova Scotia is a wonderful place to visit.  Halifax is delightful and we visited the graveyard for the victims of the Titanic, oh it was moving and so worth a visit.  We all know what happened but to see the names on the gravestones is just something else.   We had to visit Peggy’s Cove which it seems is where everyone visits and I think it is because it is like the dream place we would all like to live in.  Beautiful albeit dangerous coastline with picturesque wood board houses painted delightful colours, wild and free that is the feeling you get there.  I see the lakes from the bus and the houses in the trees with their jetties and dream of sitting at my window looking across.

Boston our destination does not disappoint.  We stay in a private house for four days that is delightful and full of interesting pictures and books.   A graveyard ghost tour at night is so much fun, and going to the Fenway Ball Park to see the Boston Red Sox win a game was awesome.   We followed the Boston Freedom Trail through the city, stopping frequently to rest up, drink coffee, eat cannolis, drink more coffee, rest up more…visit small museums and take in the ambience that is very Boston.  As truly wonderful holiday with my daughter and I didn’t get lost once!

My head seems full of dreams these days.  I feel like I want to pack so much of life in as if  tomorrow will never happen.

Well that was what I achieved going on a cruise last year.  This year will be different having moved house to a new area I will concentrate on decorating and settling in.  I have yet to meet people and make new friends here.  Sadly there does not seem to be any services that are appropriate for me and my dementia here.  I so miss the wonderful friends I made in the YPWD group in Berkshire (Young People with Dementia) and the activities that I enjoyed so much.  Berkshire are so so lucky to have such a service and credit to those who set it up, run it and work so hard to give us something to look forward to in a warm and meaningful way.

The move..that’s for next time.