Diagnosis Groundhog Day

[Springflowers123]

Good evening all.
I wonder if anyone else is struggling with the diagnosis being forgotten and then mentioned in hospital for example and having to go through it all again? My dad is really uncomfortable with the word ‘dementia’, he doesn’t want people to know and wants it wiped off his record. We are able to talk him round and reassure him, remind him he is on medication to try and help. But it makes my mum super anxious, because he forgets and then she is own edge that someone will say something to trigger it all again!

 

[Agzy]

I know exactly where you are coming from and yet my LO, along with me, attends Dementia Together cafes and activities along with music groups which also refer to the word dementia which she just goes along with. However, if anyone alludes to her and dementia (or Alzheimer’s disease) she gets really upset and also denies it and quite vehemently. I have sort of persuaded her that she has forgetfulness which people wrongly call dementia 😊

 

[Grannie G]

I never heard dementia spoken by any medic @Springflowers123.

I was always anxious just in case but everyone seemed to have the sensitivity I needed.

Try not to worry too much although I know it’s easier said than done

 

[Springflowers123]

I know exactly where you are coming from and yet my LO, along with me, attends Dementia Together cafes and activities along with music groups which also refer to the word dementia which she just goes along with. However, if anyone alludes to her and dementia (or Alzheimer’s disease) she gets really upset and also denies it and quite vehemently. I have sort of persuaded her that she has forgetfulness which people wrongly call dementia 😊

Thanks Agzy, this is something I’d like to do with the cafes etc and my dad agrees he has memory issues/forgetfulness so that’s a good one to use.

 

[Springflowers123]

I never heard dementia spoken by any medic @Springflowers123.

I was always anxious just in case but everyone seemed to have the sensitivity I needed.

Try not to worry too much although I know it’s easier said than done

Thanks Grannie G, my dad had a minor stroke a few weeks ago and it was brought up but I guess that’s more because it was a neurological issue so the dementia diagnosis was relevant, the consultant was really sensitive and changed his language but some have been really outright with it and it’s rubbed dad up the wrong way. I can cope but I think my mum feels like he blames her/like he thinks she has kept it from him. It doesn’t come up all the time though so as you say have to try and not worry too much but perhaps have things prepared to say if it does

 

[Spottydog]

I always try and get in first if I think they are going to mention the D word. I make eye contact and refer to how dad knows he has 'memory problems' and hope they will follow my lead and use that wording rather than the D word 😉

 

[Agzy]

Thanks Agzy, this is something I’d like to do with the cafes etc and my dad agrees he has memory issues/forgetfulness so that’s a good one to use.

As well as the cafes we are lucky to have a local CIC where all are inclusive and structured to have 1, tea coffe chat, 2, movement to music (excersise) and then activities. This week it was planting herds in pots ready for spring but can include simple craft work. At the activity cafes Pauline loves playing domino’s.

 

[Springflowers123]

I always try and get in first if I think they are going to mention the D word. I make eye contact and refer to how dad knows he has 'memory problems' and hope they will follow my lead and use that wording rather than the D word 😉

Thanks for this advice spottydog, that’s really helpful! I noticed one Dr do this, after my dads reaction, he said memory problems and my dad agreed so will definitely lead with that in future

 

[Springflowers123]

As well as the cafes we are lucky to have a local CIC where all are inclusive and structured to have 1, tea coffe chat, 2, movement to music (excersise) and then activities. This week it was planting herds in pots ready for spring but can include simple craft work. At the activity cafes Pauline loves playing domino’s.

Oh that sounds brilliant! I’m going to have a really good look at what I can find in our area and hope to find something similar. The herb pots sound great

 

[saraht40]

My Mum's GP just told her she has memory problems, so she doesn't know she has dementia. She has been prescribed medication for dementia, though, so I'm presuming she has that diagnosis

 

[Grannie G]

Yes she will have @saraht40

I’m glad the doctor was sensitive. And hope you are ok. There will be a lot of support for you on the forum and many here in similar positions, caring for their mothers.

When you are ready, why don’t you start your own thread in the section ‘ I care for a person with dementia’. This will help you access your replies in one place.