Sufferers what would make a difference for you?

[Sue J]

PLEASE don't let this thread just wither away.
I do hope that given Sue's brave lead, others will come forward with ideas for the benefit of us all.

Dear Gringo,

Thank you - I forget what I've written and sometimes when it's put in front of my eyes I dont 'see' it and other times I do. You have made me think of what I often read on TP and can't always put together the words to respond. People with dementia are often spoken about and not spoken to because they can't always respond in a 'normal' way and often there is discussion about sufferers saying they 'we know they can't help it' but 'they can control their behaviour at times'. To me this says, 'we know they can't help it but we believe they can'. The biggest distress I feel is when others think I can control what is happening to me. No, really the even bigger distress to me is to understand from the inside what dementia is like and to realise that so many people are suffering and being misunderstood.

Experiencing what it is like to have extreme fluctutations of cognitive ability, no longer being able to wake each day and decide what and how I want to do something but to have to see how I am and often to think it is best I don't do anything at all because I will get in a muddle. I can't control when is a good day but I do know I have better days than others. On a good day most people wouldn't notice anything wrong. Today is not so good as I am struggling to say what I know I want to but I can't howver hard I try so best I stop for now and when this bit passes maybe it will come back. Suex

 

[gringo]

I forget what I've written and sometimes when it's put in front of my eyes I dont 'see' it and other times I do. You have made me think of what I often read on TP and can't always put together the words to respond. People with dementia are often spoken about and not spoken to because they can't always respond in a 'normal' way and often there is discussion about sufferers saying they 'we know they can't help it' but 'they can control their behaviour at times'. To me this says, 'we know they can't help it but we believe they can'. The biggest distress I feel is when others think I can control what is happening to me. No, really the even bigger distress to me is to understand from the inside what dementia is like and to realise that so many people are suffering and being misunderstood.
Experiencing what it is like to have extreme fluctutations of cognitive ability, no longer being able to wake each day and decide what and how I want to do something but to have to see how I am and often to think it is best I don't do anything at all because I will get in a muddle. I can't control when is a good day but I do know I have better days than others.

Thank you Sue, I hope to-day is a better day for you.
Although it is so difficult, at times, for you to express yourself as you want to, I do hope you will persevere. Sufferers are in a minority on this forum so naturally we mostly only get experiences from the point of view of the carers. I can appreciate, to a much lesser degree, what this must be like for you, when posters tell how difficult their elderly parents can be and what ‘foolish’ things they do and say. But I, at least, am fully able to respond on occasion!
I feel it is of prime importance that you and others should try and redress the balance a little. Difficult as it may be for you to tell it like it is, your experiences and points of view could be so very helpful for us all.
Again I hope that others will join you and tell us how we can better understand this illness and help those in our care.

 

[Sue J]

Thank you Sue, I hope to-day is a better day for you.
But I, at least, am fully able to respond on occasion!

Dear Gringo*
I am a bit better thanks and do read you often but can't always reply but know you do an amazing job with your dear wife. I hope today has been a good one for you too.

I have to make an appointment, to be 'assessed' I get a letter telling me to respond in a week, two days later I get a letter saying I haven't responded!! I have to arrange for a friend to come and take me, I have to ask for an afternoon appt, I have to say I may have to cancel at short notice because some days I am too bad to leave home. I did write a reminder for me to do it which I have but don't come across very well when I am like I am today, irritable and lacking patience. The person I spoke to last week agreed that I would call Monday or Tuesday this week to book appt as would know when friend could take me. That person is on leave all week (but she didn't tell me she would be) I had to go through whole thing with new person again and made me sound like I was being very awkward, I wish I was able to be awkward by choice! Something as simple as making an appointment is like an enormous mountain to climb. I still need to phone and confirm it - I hope I must write a big reminder or I will forget. Days like yesterday and today I cannot remember if I have taken tablets or not, thankfully for me I have learnt these days pass and I will have some respite from the confusion and memory loss until the next time.

I too hope more will write on here as I have learnt a lot of how to cope with some of my symptoms from my friend who suffers when I observe her routine etc. and our shared conversations. She has obviously coped for many years without 'official' help, as many do.

Thanks to you too Kassy, I know people think I get across what I want to and some I do but there is much I struggle with but I know I'm not alone in that. Hope you've had a good day.
Sue

 

[Anongirl]

Hi Sue, sorry you are having a bad day.

Reading your post actually made me feel a bit better, in a round about way!

Yesterday my mum was fine. Calm and relaxed. She was so lovely to me because I'm poorly at the moment and told me to have a lie down and a cup of tea. That's the mum I know and love.

Today she's annoyed at the world. Shouting at me and slamming the phone down on me. I know I'm often the target because I'm closest to her.

You've given me hope that sometimes she just has bad days as you describe. At the time it just makes me feel very sad.

Tomorrow is another day. I hope it's better for both of you xxx

 

[Sue J]

Hi Sue, sorry you are having a bad day.

Reading your post actually made me feel a bit better, in a round about way!

Yesterday my mum was fine. Calm and relaxed. She was so lovely to me because I'm poorly at the moment and told me to have a lie down and a cup of tea. That's the mum I know and love.

Today she's annoyed at the world. Shouting at me and slamming the phone down on me. I know I'm often the target because I'm closest to her.

You've given me hope that sometimes she just has bad days as you describe. At the time it just makes me feel very sad.

Tomorrow is another day. I hope it's better for both of you xxx

Hi Anongirl

Am glad it made you feel better. Good days do come too. If I could say to my family , who never contact me anymore, or any of my friends I am able to say take no notice of me today I am very irritable - but it doesn't feel like me that's very irritable but something causing me to be irritable that is out of my control. My friends understand, my family don't.

Tomorrow is another day and hope it is better for you and your Mum too.xx

 

[Rageddy Anne]

Hope you don't mind my chiming in, as I am a carer not a sufferer, but I couldn't stop by without responding to the below comment in your original post:

"One of my concerns is how to help my friends and family come to terms with it too and accept what is happening, as I know they want to help but don't know how to at times"

I only wish more people thought ahead in this way!

What would help me and OH as carers (for my MIL)...?

This is what I wish MIL could have done at the stage you feel yourself at now:

- Ensure all the legal stuff is sorted (POA, living will etc) NOW.

- Inform your family (and best write down too) what you would like to happen to you at various stages in the illness, and definitely DON'T say you want to be cared for at home till the bitter end - it is a cruel and impossible request, and more than should ever be asked of anyone.

- Tell them CLEARLY that you forgive them if they are not able to fulfill your requests to the letter, and that you love them and want their lives and their happiness to come first. Unburden them of the inevitable guilt that will come.

- Dole up any inheritance you wanted to pass on, if there is any, and take measures to protect your property if you own and live independently by placing half in trust. The sooner the better so LA has less of a claim on it (especially as you don't yet have a diagnosis).

As my husband's carer I completely endorse this...my husband has never accepted his diagnosis and has steadfastly refused to talk about any of the things you've mentioned. Now his condition has progressed I'm faced with being not only his sole 24/7 carer but also lying awake at night desperately worrying about finances etc.

 

[Rageddy Anne]

A question...

Norms mentioned once that sometimes he felt as though he had just woken up in a totally strange place, but then he went on to say that given a few clues he was able to realise where he was.
I imagine that my husband copes so well in our familiar home because it is familiar, and that moving somewhere else would be difficult for him.
My question to others is " Would moving to a different but more convenient home be difficult to cope with, or would it be better to try and stay in the familiar place?

 

[KenC]

When I was diagnosed the first time I was given no support whatsoever, just told to go away and return in 9 months. I then moved home and got a new consultant, and what a difference that made.
This lady gave us all of the information about the Illness Lewy Body Dementia, along with information about the medication.
After we returned two weeks later she then started discussing how I was to change to life after the diagnosis, and she got me onto the right track with starting a new life with dementia, and as she said never look back.

We lost friends after the diagnosis but that was due to the stigma and lack of understanding on their part, strangely enough we have heard from them since as one of the husband's has been diagnosed with something similar.

But if you are given the right support as we were and advise, you feel as if the world is your oyster. We were also at the time sent to our local branch of the Alzheimer's Society, and after that I never got the chance to look back as I became a volunteer and enjoyed myself.

I have recently rejoined back up as a AS volunteer, to that I can put something back while I still have the time.

We all go through weird places when we get this illnes, but if you can get started on something worth while, like being a volunteer, or something which gives you pleasure, it will help you through the illness as you will fight to keep focused.

I have had many days when I just wanted to give up, but something or someone told me to get up and do something different, and its amazing what you can do, yes there are days when it all goes pair shaped, but they have to be pushed to one side when wever possible

Its just getting on that first wrung of the ladder and having faith in yourself

 

[Jaffy]

This site has made a difference for me.
I know we wives are always doing this or that for hubby and trying to roll with his moods. But I have just realized, I am not just his wife, not just a person with PD and dementia, but I am his carer, on his own journey of PD and dementia. (where do I go to resign?) Just joking (i think!).
Carers have a very hard life been through that with my mom, when i was younger, and PD/dementia-free. Now I have to turn this realization into something positive which I am totally unable to at the moment and will think about it more after I have a good cry: which I have to do silently not to upset C. Crying is another curse of these "problems". Love you all, you're the greatest! Jaffy

 

[Sue J]

This site has made a difference for me.
I know we wives are always doing this or that for hubby and trying to roll with his moods. But I have just realized, I am not just his wife, not just a person with PD and dementia, but I am his carer, on his own journey of PD and dementia. (where do I go to resign?) Just joking (i think!).
Carers have a very hard life been through that with my mom, when i was younger, and PD/dementia-free. Now I have to turn this realization into something positive which I am totally unable to at the moment and will think about it more after I have a good cry: which I have to do silently not to upset C. Crying is another curse of these "problems". Love you all, you're the greatest! Jaffy

Dear Jaffy

All I can say is you're obviously an amazing person to have been given such a job I have confidence you will turn this into something positive and look forward to watching this space. I seem to be crying a lot today too.
love
Seu

 

[Sue J]

Norms mentioned once that sometimes he felt as though he had just woken up in a totally strange place, but then he went on to say that given a few clues he was able to realise where he was.
I imagine that my husband copes so well in our familiar home because it is familiar, and that moving somewhere else would be difficult for him.
My question to others is " Would moving to a different but more convenient home be difficult to cope with, or would it be better to try and stay in the familiar place?

Hi Raggedy Anne
Moving to a different place would be very difficult for a dementia sufferer. When I first became unwell I knew I had to be in a familiar place my symptoms were very acute, now I am adapting to living with them and my symptoms are not so acute but still very much present.

However, I do believe moves can be possible and work in some cases and carers needs for 'a more convenient home' are important too as some homes are more dementia friendly than others. Talking about plans I think is important as some people can take this in even if they seem not to be able to engage with the plans. If a move were made lots of familiar things would help someone adapt to a new environment but of course it depends very much on how advanced someone's condition was.

If there is no necessity to move I would say stay put, it will make life much easier. If there is a necessity to move for reasons bigger than just 'convience' e.g. carer is beginning to have difficulty with stairs then I would do it sooner rather than later.

These are my thoughts based on my own symptoms and experiences with others too.
Best wishes
Sue

 

[Rageddy Anne]

Hi Raggedy Anne
Moving to a different place would be very difficult for a dementia sufferer. When I first became unwell I knew I had to be in a familiar place my symptoms were very acute, now I am adapting to living with them and my symptoms are not so acute but still very much present.

However, I do believe moves can be possible and work in some cases and carers needs for 'a more convenient home' are important too as some homes are more dementia friendly than others. Talking about plans I think is important as some people can take this in even if they seem not to be able to engage with the plans. If a move were made lots of familiar things would help someone adapt to a new environment but of course it depends very much on how advanced someone's condition was.

If there is no necessity to move I would say stay put, it will make life much easier. If there is a necessity to move for reasons bigger than just 'convience' e.g. carer is beginning to have difficulty with stairs then I would do it sooner rather than later.

These are my thoughts based on my own symptoms and experiences with others too.
Best wishes
Sue

Thank you Sue; that's very helpful. My husband loves it here, most mornings he looks out of the window and says how lucky we are to be here. I think we'll be able to make it work for some time, as long as busybodies don't involve themselves in our finances and start plundering! So far we're self funding as my husband refuses even to claim Attendance Allowance.

 

[Sue J]

Little things that help a lot

Reading about what can help in early stages , and would have helped me when I first had symptoms, is to have every plug in the home labelled, very clearly in dark thick lettering, what it's for.

When my brain doesn't work as it should it takes a lot of stress off it when I don't get confused by unlabelled plugs. I wish I had done this before I had symptoms as it probably would have made my life a lot easier then too.

 

[Raggedrobin]

That's a good point Sue, my Mum started accidentally unplugging the freezer and I realised too late that labels might help.

 

[Pookie]

My friend D hasn't had a diagnosis either,but she has all the symptoms too.Take care


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