Dementia diagnosis day - triple D!

[DesperateofDevon]

So we are inching closer to the holy grail I’ve sought for Mum for years. Dementia diagnosis day.......or triple D as I like to call it!

I’m dreading it, & I can’t imagine how Mum must be feeling.

The thought of the journey, hours of travelling & the emotions of the day have kept me awake for hours!

I know that giving it a name or label won’t change what this disease is, but I hope that it will make caring & getting care in place for Mum easier. I live in hope ...

 

[Grannie G]

I can`t really say I hope all goes well @DesperateofDevon. It`s a butterflies in the stomach situation. I hope you get some answers which will enable you to get some help.

 

[DesperateofDevon]

I can`t really say I hope all goes well @DesperateofDevon. It`s a butterflies in the stomach situation. I hope you get some answers which will enable you to get some help.

Yes you’ve hit the nail on the head, but fingers crossed for the best of a bad situation.
I realise reading on here how far I’ve come & what’s been achieved so far, also how lucky I am in getting the help/ care that is now in place.
So thank you to all who’ve read & replied to my vents/ cries for help/ frustrations & sorrows. You really are amazing people, & I keep saying I’m humbled by this experience but I truly am in awe of what carers do day in day out. I want to thank you all for taking precious time out of your days to read & reply to posts on this forum. The help & support given has made me feel more like me again; the difference is noticeable to my family & few friends I have left ! I am able to repair & renew precious relationships & enjoy life through your advice & guidance.
So thank you all, you are too many to name but you know who you are
Much love & thanks
Xx

 

[Dimpsy]

I've been following your journey DoD and just hope that today is the day you are able to stop banging your head against a brick wall.
Please let us know how your day goes

 

[DesperateofDevon]

Fretting at the moment as daughter borrowed the car & is still not home but up north somewhere!!! Arrrrghhh! Still she’s meant to be back now not later tonight!
Was Monday, then Tuesday now tonight!
So stress levels high! DVT leg painful, & feeling a little sorry for myself!

 

[DesperateofDevon]

YES!YES!YES!
So my poor confused Mum will be getting the help & ongoing assessments she needs to continue her support at home. It’s been a long & difficult journey at points & I know that more difficult times are ahead; but today is a good day, a day of lightness & hope for dignity for Mums journey through this disease!

Preliminary diagnosis from the CMHT - tbc by consultant.
Small vessel vascular disease, with acute cortex damage- to be honest I’m amazed my mum is able to do what she can do!
Her score in 2014 was 82/100 & yesterday it was 61/100 not good but not the worst either. Positive outcomes - Mum able to understand & retain some information but not able to retrieve it, tired mentally & physically quickly but able to with prompts a/ b/c options actually find that information.

Mum reassured that with help she can stay in her home, but that either it’s help in the home or care. So wonderful to have support.

She loved the new cleaning agency ladies, & on inset days would like to meet one ladys children, mum used to work in a school helping children read & had great joy in the interaction & vice versa!

Hair appointment & three meals in Mum & lots of water & I actually have hope for a better future, protecting my bubble!!!!!

Lovely carers to boot reinforcing positivity in all being done to help Mum remain in her home!
Yay!!!

Explained to Mum how it was a positive day with positive outcomes & the possibility of medication to help her feel less depressed. Also the prophylactic antibiotics have encouraged Mum to drink more & become more active in trying to get to the toilet, with really positive results.
So Mums confidence is now growing, I’m sure the see-sawing/ flip flopping will continue & trials & tribulations are ahead

But..... today......
........I’m floating on a little cloud of happiness today, tired & sore aching leg ( dvt) not happy but I feel lighter- totally knackered but lighter!

 

[Grannie G]

Oh well!
No one can say it`s good news @DesperateofDevon but it`s something concrete which will get your mother help and hopefully ease your anxieties a little.

 

[DesperateofDevon]

Oh well!
No one can say it`s good news @DesperateofDevon but it`s something concrete which will get your mother help and hopefully ease your anxieties a little.

It’s confirming what we thought, & means we can ensure the proper medication, treatments & care plan. I am fully aware of what’s ahead & it’s grim but with the clinical mental health team I hope to give mum dignity through what’s ahead. It also means I can plan for what’s to come - rather than lurching from crisis to crisis.

Finally confirmation of what I could see, & knowing that support will be more easily put in place in future. So yes it’s not good news but it’s positive news.

When we left Mum yesterday it was as if a huge weight had been lifted, she was happier & more positive than she has been for years
So it was good
Xx

 

[canary]

Ah, only just found this.
Im very pleased for you - vindication is such a relief. You know now that what you have been seeing is true and other people have confirmed it, so it will be easier (Im not saying easy) to deal with SS, carers etc.


I will say, though, that dealing with dementia is a bit like herding cats. You just think youve got it sorted and something else happens. Its not an easy thing to plan for and you have to take it as it comes and deal with problems as they arise.
But at least you can tell yourself now that its the dementia.....

 

[DesperateofDevon]

Herding cats
Love it

 

[DesperateofDevon]

Ah, only just found this.
Im very pleased for you - vindication is such a relief. You know now that what you have been seeing is true and other people have confirmed it, so it will be easier (Im not saying easy) to deal with SS, carers etc.


I will say, though, that dealing with dementia is a bit like herding cats. You just think youve got it sorted and something else happens. Its not an easy thing to plan for and you have to take it as it comes and deal with problems as they arise.
But at least you can tell yourself now that its the dementia.....

I like to have contingency plans sorted in my head before hand; I find for myself being informed about all aspects medical, psychological etc means I can emotionally deal with events better. It’s not for everyone but worse case scenario to best case scenario I have an idea of options & what’s possibly required.

Yesterday I was fascinated by the C/T scan - as was my daughter. Being able to understand the scan meant a greater awareness of how/ what / where the disease not only progresses but also how the brain compensates for any damage. As we only use a third of our brain that gives me hope, of what I’m not sure. But it’s hope!

Informed choices for me is my comfort blanket, having seen my grandparents & other relatives progress through this disease I am hoping to give Mum & Dad as much dignity as I can.

I am aware I will fail & flounder at times but today is sunny & today I am - what my biological mum used to call me her sunshine girl. Glass half full et al.

 

[TNJJ]

YES!YES!YES!
So my poor confused Mum will be getting the help & ongoing assessments she needs to continue her support at home. It’s been a long & difficult journey at points & I know that more difficult times are ahead; but today is a good day, a day of lightness & hope for dignity for Mums journey through this disease!

Preliminary diagnosis from the CMHT - tbc by consultant.
Small vessel vascular disease, with acute cortex damage- to be honest I’m amazed my mum is able to do what she can do!
Her score in 2014 was 82/100 & yesterday it was 61/100 not good but not the worst either. Positive outcomes - Mum able to understand & retain some information but not able to retrieve it, tired mentally & physically quickly but able to with prompts a/ b/c options actually find that information.

Mum reassured that with help she can stay in her home, but that either it’s help in the home or care. So wonderful to have support.

She loved the new cleaning agency ladies, & on inset days would like to meet one ladys children, mum used to work in a school helping children read & had great joy in the interaction & vice versa!

Hair appointment & three meals in Mum & lots of water & I actually have hope for a better future, protecting my bubble!!!!!

Lovely carers to boot reinforcing positivity in all being done to help Mum remain in her home!
Yay!!!

Explained to Mum how it was a positive day with positive outcomes & the possibility of medication to help her feel less depressed. Also the prophylactic antibiotics have encouraged Mum to drink more & become more active in trying to get to the toilet, with really positive results.
So Mums confidence is now growing, I’m sure the see-sawing/ flip flopping will continue & trials & tribulations are ahead

But..... today......
........I’m floating on a little cloud of happiness today, tired & sore aching leg ( dvt) not happy but I feel lighter- totally knackered but lighter!

Hi.I have just caught up.
I’m glad your mum likes the cleaning ladies.It all helps.
I’m so pleased things are working out for you and your mum.
Long may it continue.
Now you need to relax(not easy) a bit more.
I hope your leg is improving?

Maybe a G&T later?

 

[DesperateofDevon]

Oh the leg is now weight baring! Yay! Trying not to do to much.... & failing so have elevated leg a lot today & am going to thin the black bamboo this afternoon!

Bliss!Legs out- shorts on!

Hilariously I am able to Velcro passing small animals & children to hairy legs at the moment - too much information?! but am terrified that I might nick self shaving them.... I don’t think there is enough Veet in Boots to de - Fuzz!! Will soon be able to weave own 50 denier tights in natural

 

[TNJJ]

Oh the leg is now weight baring! Yay! Trying not to do to much.... & failing so have elevated leg a lot today & am going to thin the black bamboo this afternoon!

Bliss!Legs out- shorts on!

Hilariously I am able to Velcro passing small animals & children to hairy legs at the moment - too much information?! but am terrified that I might nick self shaving them.... I don’t think there is enough Veet in Boots to de - Fuzz!! Will soon be able to weave own 50 denier tights in natural

..That made me laugh.

 

[DesperateofDevon]

..That made me laugh.

Life huh!

 

[Sarasa]

SO glad there is a plan for you mum @DesperateofDevon .

 

[DesperateofDevon]

SO glad there is a plan for you mum @DesperateofDevon .

Thank you, fingers crossed!

 

[AliceA]

Just caught up, just been herding a few cats myself. Good luck. Look after that leg too.

 

[Dimpsy]

The sense of relief you are feeling now that your mum has a firm diagnosis literally jumps out of your messages, so pleased for you

 

[Donkeyshere]

Le

Oh the leg is now weight baring! Yay! Trying not to do to much.... & failing so have elevated leg a lot today & am going to thin the black bamboo this afternoon!

Bliss!Legs out- shorts on!

Hilariously I am able to Velcro passing small animals & children to hairy legs at the moment - too much information?! but am terrified that I might nick self shaving them.... I don’t think there is enough Veet in Boots to de - Fuzz!! Will soon be able to weave own 50 denier tights in natural

Leave the legs - its nearly winter! No-one will notice???!!!! (except the animals and children when they get dragged along!)