Having dementia is like being on a roller coaster, with good times, and then a blip of an overwhelming day. Mind you, life in general can be the same although with dementia it can feel just that bit more ghastly. So with an inane grin plastered across my face, (remember, smiling releases good endorphins) getting to a more positive state can be achieved adequately.
I’m getting there but thought I would share with you my thoughts so far.
My bathroom; yes it’s still empty; no I have not found help to sort it out yet; yes I am working on it. The local Alzheimer’s Society have been brilliant in that respect and are working hard to help me. I am feeling more positive because I might have finally found a company who are professional, use good quality products who can come in and start again and give me a bathroom. Yay!!! So, my overwhelming part is that I have to now find the information given me by Social Services to apply for a grant towards getting it done. Then I have to see if I can get a loan to pay it, or see if the Company does finance preferable at 0% interest. So, the beauty is that after 6 months of not being able to have a shower I am getting there. The warts are that I really need someone to talk through this process with to make sure I am doing the best thing for me now that my judgement is somewhat rubbish these days through dementia.
Note to self: for those of us living with dementia without family able to help us with decisions, it would be great to have a dementia advice line/support to chat to help us make better decisions. Who can we talk these things over with now? Someone who can ask us questions to make sure we are doing the right thing. Is this something that we can put in place locally? Actually this would work well for anyone who is vulnerable and who needs objective advice. Hmmm food for thought….
There are always positives to look forward to. When my fibromyalgia is not bad (which it is at the moment – it will abate), I have a garden which will become my relaxing escape place to be in away from the world. I am so excited thinking about the day when I can start it. Once I have my bathroom finished, I can start saving to get it fenced, and then the gardening starts. I am of course working on a 5 year plan!!! I have a beautiful coastline to walk along, pick up sea-glass, watch the birds, embrace the sea breeze.
Positive actions: sometimes just 10-15 minutes a day emptying yet another box from moving in will make me feel better, another strip of wallpaper scraped off the wall. Continuing my creative textile course, sewing the next piece of work. All these small things make my heart lighten. Not least is being involved locally in action for Dementia, making my home town dementia friendly, educating, and just being involved is such an enjoyment in itself.
So, on days when I feel alone and very overwhelmed with the things I used to be able to do without having to prepare myself, I try to look at what I love doing in my life, and what I have and what I can get excited about, and it works.
Take a deep breath, I just have to find a piece of paper I tidied away, make a simple phone call, ask some questions. Write it down so I don’t forget and can make sense of it.
Today I can do these things. Putting my pants on now.
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.
..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!!
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.
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.
Sunday morning. Ella my cat is hell bent on getting me up does everything she can. She learns quickly, anything that irritates me will get me up to stop her. Licking my face, touching me with her paw; claws out – but gently. That gave me a bacterial eye infection. My arms have strange scratches that I don’t remember getting but know the culprit. She never does anything maliciously, I believe that there is not a bad bone in her body. She is a delightful, loving companion, but she likes to be fed at her own times. She can gently touch my face, and oh so quietly, meows close to my ear. She starts chewing things, pushing things knowing that it will exact a response from me.
No Ella. I say to her.
She will move on to something else. What is there that she can chew on the bedside table. Oh there is the necklace hanging on the bedpost, it is made of seeds brought back for me from the Caribbean ten years ago. Nutmeg and all kinds of fragrant seeds that I love to smell when I go to sleep. She will chew it a bit then leave it, most distasteful for a cat!
Next she moves..on..to…the…emergency….cord…………… ORANGE LIGHT FLASHING, BEEP BEEP BEEP… OMG she has managed to pull the cord and called an emergency. For goodness sake Ella what have you done!
Beep, Beep, Beep…
“Hello, you have an emergency?”
“Sorry, Sorry, my cat decided to wake me up by pulling the cord”
“No emergency, you are ok?”
“Yes Yes I am fine. Sorry about my cat”
I made Ella wait for her breakfast after securing the cord out of reach. It will not happen again 🙂