How do you all cope

[Nicky Liverpool]

Hello my name is Nicky and nearly a year ago my younger sister was diagnosed with Alzheimers. She is 52 this year and has Down's Syndrome. She is my best friend and in years gone by my holiday partner, drinking partner lol in fact we did everything together. She has also developed epilepsy on top of everything else.

It's breaking my heart watching her deteriorate and not knowing what to expect next.
We live with my 80 year old parents, mum is also poorly and my Dad is being a rock. Any coping mechanisms, words of wisdom appreciated ?

Thank you

 

[Kevinl]

Keep posting about it, always someone here to listen, that hello and welcome. Really my manners, should have said that first. K

 

[Nicky Liverpool]

Keep posting about it, always someone here to listen, that hello and welcome. Really my manners, should have said that first. K

Thanks for the welcome Kevin - not really got anyone I can speak to about it so it will be good to chat to people who understand

 

[Kevinl]

I've been on here since 2013, cared for wife and mum both now passed away so I just help out a neighbour with her mum sometimes these days.
I did what I did because I know had it been the other way round they would have been there for me too (as the song lyric goes).
I know I've said it before but, I'd do it all again, tomorrow if I could, in a heartbeat but not an option now. Take care K

 

[Izzy]

Welcome to the forum @Nicky Liverpool.

I’m so sorry to hear about your sister. How heartbreaking.

I’m glad you’ve found this forum. You’ll always find someone here to listen and to support you. Please do come on here and chat, ask questions, get things off your chest - or whatever you need to do. This a safe and supportive place to be.

 

[Izzy]

Just thinking @Nicky Liverpool, there may be something of interest here -

Dementia and Down's syndrome

People with Down's syndrome have a higher risk of developing dementia. A person with Down’s syndrome may have similar symptoms as someone without Down’s syndrome. However, there can be some differences around changes in behaviour and personality.

www.alzheimers.org.uk

 

[Nicky Liverpool]

Welcome to the forum @Nicky Liverpool.

I’m so sorry to hear about your sister. How heartbreaking.

I’m glad you’ve found this forum. You’ll always find someone here to listen and to support you. Please do come on here and chat, ask questions, get things off your chest - or whatever you need to do. This a safe and supportive place to be.

Thank you Izzy for the welcome. Now that I am here I will have lots of questions and probably a rant at times.

 

[Kevinl]

My I'm ranting about the state of the weather (very British) but it's stopping me going out playing on my boat, call this a summer?
Sat in the kitchen at home, fuming about it.
K

 

[Grannie G]

Welcome from me too @Nicky Liverpool

I’m glad you’ve found this forum.

There are a lot of us here who have been through the mill with what dementia has demanded of us and still is demanding.

Posting here as part of a community helps carers through the feelings of isolation, sadness and often despair.

It sounds as if you have the worry of the family on your shoulders. I hope you have some time for yourself.

 

[jennifer1967]

Hello my name is Nicky and nearly a year ago my younger sister was diagnosed with Alzheimers. She is 52 this year and has Down's Syndrome. She is my best friend and in years gone by my holiday partner, drinking partner lol in fact we did everything together. She has also developed epilepsy on top of everything else.

It's breaking my heart watching her deteriorate and not knowing what to expect next.
We live with my 80 year old parents, mum is also poorly and my Dad is being a rock. Any coping mechanisms, words of wisdom appreciated ?

Thank you

hello @Nicky Liverpool my advice is one step at a time. stops you getting overwhelmed. make memories and dont try and predict the future, it can be different for everyone. and talk

 

[Nicky Liverpool]

Not really and I think that is part of the problem. As many on here I work full and then go home and do the caring bit. There isn't any time for me or my dad either. He's 80 and a very proud man and at the moment won't accept any help. It's hard watching her quality of life diminish and we are only 12 months in. We do think she has had it for many years before the diagnosis. She had such a bubbly personality and loved everyone. She was always up for a laugh and a giggle and all that's gone now. There are little glimmers of the old her but they are few and far between now.

 

[Grannie G]

It`s a tragedy when the change is so dramatic and challenging.

Your dad is very lucky ( if you can call it that ) to have you to share the caring with him.

If he was on his own he would suffer without accepting outside help.

It won’t help your mum if you and your dad suffer in silence. Be vigilant. The time will come when your dad will be able to accept help from someone other than you and you will be able to facilitate that.

If you can, do some groundwork now so when the time comes you will be prepared

It`s what I did @Nicky Liverpool when my husband had dementia. He was like your dad, very private, didn’t want strangers in the house. A carer was introduced slowly and gradually and we never looked back.
If you do your research you can get a good agency who can provide well trained carers for people with dementia who will make a big difference to your lives.