Sufferers what would make a difference for you?

[Sue J]

As yet I remain undiagnosed but have had symptoms for 4 years now. I'm not daft, although others might say that's a matter of opinion I know something is very wrong and my life has changed irrevocably. I try and come to terms with it but as other sufferers know it is an ongoing struggle. I have seen improvements this year and it is not me to give up.

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.

Well I've waffled again but want to ask of other sufferers 'what things do make or would make a difference for you' from friends and family.

I'll try and get my thinking cap on too.

 

[juniepoonie]

hi sue that's a great idea! that would help those of us with loved ones who are suffering. we need a little bit of insight so I hope others do as you are. keep up the good work Sue. juniepoonie x

 

[garnuft]

I'm curious as to why you have had no diagnosis after four years?
Have you had all the tests available?
Have Doctors ruled Dementia out?
Are you still undergoing tests?
Just that, four years seems a long time when one is seeking a diagnosis.

 

[garnuft]

I have seen improvements this year and it is not me to give up.

Are improvements to be expected in Dementia?

 

[CollegeGirl]

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.

Well I've waffled again but want to ask of other sufferers 'what things do make or would make a difference for you' from friends and family.

A really good question, Sue. As someone who is not a primary carer, but a supporter of one, I often really struggle to know what to do for the best, both for my mam (the sufferer) and my dad (the carer). Sometimes, things I've tried to do, or say, to help have actually backfired and despite my very best intentions have made things worse.

I would be very interested to hear what other sufferers might have to say in response to your question, it could help me up the learning curve.

xx

 

[Sue J]

I often have difficulty expressing myself and so can't join in conversations which I think makes it awkward for others so they stop conversing so as not to leave me out, it helps if they carry on I am still interested in what they have to say and listening can sometimes help bring back my ability to express as I have to try and concentrate on what is being said. Sometimes though I just can't take it in but still wouldn't want them to stop. But speaking slower makes it easier for me at these times.

 

[CollegeGirl]

That's interesting Sue. Does it help if the people who are conversing still make eye contact with you while they are talking, so that you know you are still included even if you are not verbally responding for a few moments? That's what I have tried to do with my mam.

 

[Dazmum]

It is a good question Sue. A short while ago, someone posted to say that it made her angry when if she commented to a relative or friend, that she kept forgetting things, they said they did it too, so not to worry herself. She commented that they didn't actually know what it was like. (Sorry if I'm getting this wrong OP). I'd always done that with my mum, in the hope that it made her feel a bit better and, in her words, that it 'wasn't just her' who forgot things. So, hearing what the OP said, made me realise that in some cases, it's not a good or kind thing to try and empathise. I suppose it's down to different personalities as to how we deal with things like that.

 

[Sue J]

That's interesting Sue. Does it help if the people who are conversing still make eye contact with you while they are talking, so that you know you are still included even if you are not verbally responding for a few moments? That's what I have tried to do with my mam.

Not always, as if hallucinating or other mental distractions occurring it can trigger negative things towards the person talking - which I don't want. Difficult for the other person to know that is happening so if I were to turn away I wouldn't want them to stop talking to me - if that makes sense?

 

[CollegeGirl]

Not always, as if hallucinating or other mental distractions occurring it can trigger negative things towards the person talking - which I don't want. Difficult for the other person to know that is happening so if I were to turn away I wouldn't want them to stop talking to me - if that makes sense?

Now that is interesting, because I thought eye contact would help. It just goes to show that things are not always as they seem.

Thanks for starting this thread, Sue.

xx

 

[Sue J]

It is a good question Sue. A short while ago, someone posted to say that it made her angry when if she commented to a relative or friend, that she kept forgetting things, they said they did it too, so not to worry herself. She commented that they didn't actually know what it was like. (Sorry if I'm getting this wrong OP). I'd always done that with my mum, in the hope that it made her feel a bit better and, in her words, that it 'wasn't just her' who forgot things. So, hearing what the OP said, made me realise that in some cases, it's not a good or kind thing to try and empathise. I suppose it's down to different personalities as to how we deal with things like that.

I understand that too, it is usual to try and reassure i.e we are all like that sometimes. It really is different when the majority of your time you cannot remember what you just did. I have a friend who suffers too and have learnt, it's quite funny she often says 'you think for me or remind me what do I want to do?' , I struggle enough to think for myself most of the time however I know her well and so can reorientate her often more than I can myself. I sometimes think it's like if someone became blind and you are their eyes if you go out with them with dementia it's like you have to be someone's memory asking someone with dementia to remember is like asking a blind man to see. Having said that I will now contradict it and say that having got to know my friend I do push and try and encourage her memory and because we have shared experience I can remind her which is why the isolating nature of dementia exacerbates the condition I believe. Don't feel I've expressed this very well.

 

[CollegeGirl]

Don't feel I've expressed this very well.

You've expressed it very well, Sue. Can your friend do it for you, too?

 

[Sue J]

You've expressed it very well, Sue. Can your friend do it for you, too?

Now you've made me think!! Yes, she can sometimes. Because we share the depths of our being with each other and have an instinctive understanding too.

 

[CollegeGirl]

Now you've made me think!! Yes, she can sometimes. Because we share the depths of our being with each other and have an instinctive understanding too.

How wonderful that you have such a friendship, you are very lucky.

 

[Dan57]

Something that has helped me quite a bit. As I am making more mistakes every day, my poor wife has been getting frustrated more often also. Rather than argue with me directly, she has started to yell at our new imaginary friend Al. It let's her vent and gives me a clue that I might have gone to far. It also helps us avoid any direct conflict.

 

[Jaffy]

I love this! Wish there were hundreds of replys. I am taking notes (a compulsive note taker-but where oh where are those notes when I need them!) I really think yelling at an "Al" may help my husband and I (both dementia). I hope to give this list to our family and friends, there should be a book written. (I used to be an author in my "Life before D.")
Please, people, add to this, or your carer write what they know has helped. If I ever recall what helps here I will add it.

 

[Jeanie 73]

Hi again Sue yes a good idea, some of the things that would have helped at the time were those who said "Oh well I do that" as someone else mentioned. they have stopped saying it now as its very obvious that they do NOT do that, what ever that is!

I am very lucky to have my daughter and grand daughter living in the flat above mine and my daughter is very good and we can talk about most things, for instance when I could not remember how to tie the ends of my scarf she said her first inclination was to say "don't be silly" but she didn't and simply tied it for me Little things like that are simply priceless to us.

Must get to bed goodnight all. Jeanie xxx

 

[Miss Merlot]

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).

 

[charles.jaggers]

Family and friends not being afraid.

I think that telling people we have dementia is like saying boo to them it is scary.People need to change to het rid of the stigma. I have started going to a mental health group for depression to avoid isolation. I was elected chair 3 weeks ago and have built a social life.

As yet I remain undiagnosed but have had symptoms for 4 years now. I'm not daft, although others might say that's a matter of opinion I know something is very wrong and my life has changed irrevocably. I try and come to terms with it but as other sufferers know it is an ongoing struggle. I have seen improvements this year and it is not me to give up.

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.

Well I've waffled again but want to ask of other sufferers 'what things do make or would make a difference for you' from friends and family.

I'll try and get my thinking cap on too.

 

[gringo]

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.

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.