Help needed with talking to friends and relatives

Dunroamin

Registered User
May 5, 2019
418
0
UK
Hello @WTG. I think you hit the nail on the head with your statement that you see friends 'denying your reality. ' Yours (and my) reality are indeed hard to determine by others who do not have MCI, Alzheimers or whatever. They cannot 'see' our reality.

I too have friends, ex collegues and neighbours who deny me my own specific reality, either as a defence mechanism for themselves, to be kind, to deny an uncomfortable truth - or to be completely bewildered and unsure of the rules of engagement.

I also think that a certain level of academia allows us to develop other pathways of coping in the early stages, and together with a reasonable vocabulary this merely reinforces the idea that we remain 'well.'

I hope this makes sense, as I am quite fatigued today after the first outdoor swim for ages yesterday.
 

Pots and Pans

Registered User
Jan 13, 2020
298
0
Hi @Alder, thank you so much for that post. I found it very enlightening.
@Pots and Pans you may be interested in this course Preventing Dementia run by the Wicking Dementia Research and Education Centre at the University of Tasmania. There is a section likening blocked pathways in the brain to a road network. A lorry is going to have more difficulty getting through if there are only a few roads to its destination and one of them is blocked. If they all become blocked the lorry won't be able to get there at all. The same is true with the brain and vascular dementia. Someone with a lot of neural pathways due to education and keeping learning new things may be more easily able to find a way round blockages even if the damage to their brain is quite severe. That is very simplistic of course, but I thought it was an interesting analogy.
Thank you. Yes, sounds like arterial analogy. If the motorway blocked, then the smaller routes take over. If the motorway stays shut then the smaller roads need to be widened. Neural pathways due to use over years is also interesting. But oh dear, I am good at getting intellectually interested... but now have to go help OH make a cup of tea....
 

Boneking

New member
Nov 11, 2022
9
0
Just to let you know, you are not alone. I am the youngest of 14 and there is no family history of MCI or any type of dementia. I think the biggest problem with some illnesses is that if it can't be seen then it is harder to believe and if you don't show signs of it all the time they forget or don't believe. I have had back issues for years. Have had failed back surgery and about 5 years ago had a nerve stimulator installed in my spine to help with my nerve pain and spasms. I have sleep apnea and restless leg syndrome. These are all invisible to the eye yet can be very serious. You could tell a room full of people this but if someone came into the room with a visual problem say, a broken arm. Most questions or concerns will go to the person with the broken arm. It's almost like they can't get their heads wrapped around it. Same as when someone passes away, some people have to see the body in the casket to accept it. Seeing is believing. Good luck my friend
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
Just to let you know, you are not alone. I am the youngest of 14 and there is no family history of MCI or any type of dementia. I think the biggest problem with some illnesses is that if it can't be seen then it is harder to believe and if you don't show signs of it all the time they forget or don't believe. I have had back issues for years. Have had failed back surgery and about 5 years ago had a nerve stimulator installed in my spine to help with my nerve pain and spasms. I have sleep apnea and restless leg syndrome. These are all invisible to the eye yet can be very serious. You could tell a room full of people this but if someone came into the room with a visual problem say, a broken arm. Most questions or concerns will go to the person with the broken arm. It's almost like they can't get their heads wrapped around it. Same as when someone passes away, some people have to see the body in the casket to accept it. Seeing is believing. Good luck my friend
This is so true. Many of us here (who are/were carers) have experienced frustrating comments from well-meaning others who say, 'He/she seems OK to me!' as if that makes everything OK. Usually these comments are after seeing the person for a very short time and when the person is also in 'host mode' and trying their very best to appear OK!

But I've also heard people making nasty comments in car parks, when someone parks in a 'disabled' space but others can't immediately see why they require it. People are so judgemental!

Like most people getting older, I have my own health concerns, all of which are completely invisible! I am in constant pain with my back but I can't mention that because 'everyone has a bad back'. :(
My boyfriend has leukaemia which is clearly a terrible thing but it means I am no longer able to discuss any of my health concerns because he has cancer and that trumps everything. (He is well at the moment and not in any pain whatsoever.) I appreciate he is ill but much as I wish, it doesn't make my health issues go away. Yet I get a very bad reaction if I even mention anything about my own health. :(