Diagnosed with CBD

[Ns1994]

Hi my grannie was diagnosed in June of this year with CBD after 4 years of tests. I look after her a few days a week as she's unable to do things by herself.

[raincitygirl]

Hello Ns1994 - Welcome to the site

My husband has been diagnosed with CBD and I'm learning a lot from the wonderful sharing members here. Will you tell us more about your grannie - how old is she and does she live alone? Does she have help besides yourself? And how are you coping with being a caregiver?

I look forward to hearing more from you.

Anne G.

[Ns1994 in reply to raincitygirl]

Hi Anne, my grannie is in her 80s she's just moved into my aunties as they converted the garage so she has has her own little sitting room, kitchen,bathroom and bedroom.my auntie is her full time carer but I will look after her to that she can have a well deserved break.

I've had the odd moment when I've found it hard but I wouldn't change it and it also means I get to spend time with her.

[DenB in reply to Ns1994]

What a wonderful grand daughter you must be!

My husband is in his 8-9th year, with CBD, since onset. He too had 3 years of testing before diagnosis in 2013.

If you or your Auntie have any questions that you would like to ask, I would be very pleased to answer any, to the best of my knowledge.

The more we can share our experiences and anything that we have learnt along the way, can only be good.

love and best wishes

Denise X

[Ns1994 in reply to DenB]

Thank you Denise. Means a lot x

[Hidden in reply to DenB]

Hi Denise, I’ve read a lot of posts about different stages of CBD my Mum can’t walk unaided( can’t use a walker anymore, but can walk if you hold her hands and walk backwards with her) her speech is not too good she struggles to talk a lot of yes and no’s but seems to understand everything, can’t cut up her food but is eating and drinking fine. Has to go to loo every hour or two 24/7. I wondered if you have any suggestions that would help me help my mum? Thank you x

[DenB in reply to Hidden]

Hi Bed42,

Are you in touch with any Occupational therapists yet?

They can be so helpful with any equipment you will need to help your mum. Because of the deterioration of her walking and the risk of falls, I would suggest you ask for a wheelchair and a piece of equipment called a Sara Stedy. The Sara Stedy will help move your mum from a chair to the wheelchair. OT's will help supply your mum with continence products, which she will need eventually and will help with having a ceiling hoist fitted. I would suggest having the hoist fitted before you need it.

There is a site called, Completecare, which I have always used for special cups to help with drinking, bed protection products, etc.

Of course, I am thinking ahead. You may not need any of these things for a while, everyone's progression may be different.

Your mum will eventually need caring for 24/7.

Is your mum on any medication? How old is your mum?

I generally try to take each day as it comes and to make the most of each day too.

A lot of what I have suggested, you may already be aware of.

Oh, and have you joined the PSPA...very helpful and lots of information.

The other thing is to keep reading the posts on this site and you will learn most of what you need to know to help your mum with her journey.

I have learnt so much from the lovely people on here to help me over the years!

Best wishes Denise

[DenB in reply to Hidden]

I have just thought of something else to advise you of that is important and that is, to make sure that you arrange Power of Attorney for your mum if you haven't already done so.

D x

[Hidden in reply to DenB]

Thank you doctor advised that too, wheels are in motion x

[raincitygirl in reply to Ns1994]

You sound like a wonderful family who will help your grannie have the best quality of life possible during the progress of this disease.

Bless you!

Do keep in touch and let us know any questions you have

Hugs X

Anne G.