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.