Looking for support from other carers - carer for my dad who has Parkinson’s

Hi is this forum still open I’m new to all this only just joined I’m looking for support from other carers as I’m a carer for my dad who has Parkinson’s
Thanks Nikki xx


Hi @Nikki_Anne

Yes the forum is open and we are all here out in cyber space.

I hope you find the forum supportive and helpful.

I don’t have experience of caring for someone with Parkinsons but I do have experience of what it’s like to be a carer.

Others on here will have understanding of Parkinsons and/or caring for a parent.


Thank you Mel hope ure ok I’m looking forward to chatting on here to other carers for support it’s hard work sometimes but if I know people are here to support me that will help me a bit xxx


@Nikki_Anne , the good thing about the forum is we all know what its like to be a carer - the good, the bad and the ugly! You can find practical advice, friendship and support on here.

You might also like the Care for a Cuppa sessions that Carers Uk organise:


Welcome! I’m glad to see you found Roll Call, it’s a great place to chat ‘over the fence’ with a cup of something.

Share as much or as little as you want & feel comfortable with. You’ll find we express our full range of moods here, it’s a safe space to air and vent and feel listened to and understood. A BIG warm embrace of empathy with a good dose of humour (as dark as you want it) and mischievousness from a few members (you know who you are!)! :wink:

Are you able to get any time to yourself, to do something kind & compassionate for you too? I’m not going to sprout any clichés (take a look at why: The worst clichés people say)

Friends can be great. BUT as you & @helena_2006 have said some people and family like your brother, can easily direct from afar but don’t actually DO anything - Easy for critics to hurl orders or critique, with no clear understanding of what’s happening every day. Empathy is not in everyone, as many of us have found out!

I echo what @helena_2006 has suggested. Also, perhaps read and reflect on each of our carer experiences and think about what you want, what’s good for you, yourself.

There’s a lot each of us can share So to ensure you’re not too overwhelmed (given everything you’re doing already!) it may be good to think about what YOU would like to know and direct us to what YOU need. For once, you can get some tailored support!

A brief on my story. (may not be soo brief but here goes!)

My story: Dad had a major internal bleed in 2015, had a nightmare hospitalization, and came out diagnosed with vascular dementia.
Same time, the big corp company I was with restructured & I was offered a new position & relocated for the 16th time to Belgium. I was very torn for 6 mths then took a sabbatical to help my Mum look after Dad.
2016 Dad was then diagnosed with Bladder cancer. I took the max time off, went back to work, then decided to resign 6mths later, mid 2017, so that I could help Mum look after Dad.
The toughest rollercoaster was 2017 to 2020. There was an accelerated decline in Dad’s health because his congestive heart failure was destabilized by the bladder cancer symptoms (bleeding & incontinence), and everything was exacerbated by his arthritis - disabilities. I’ll save you from the long version of the decline & the nightmare.
Except to say Mum was diagnosed with 2 separate, different cancers end of 2019. Dad passed early Jan 2020 and 1 week after the funeral Mum had the 1st surgery, then the 2nd, then chemo & radiotherapy…we had a small reprieve then the cancer came bk in 2021.
Thankfully, things are stable right now and the cancer is controlled. I give thanks for calm, predictable quiet stability AND DEEP SLEEP!!; Mum’s health and being able to continue my little business.

It reads like a nightmare, but even with all that :poop: :poop: I made 100% the right choices for me. I used to proactively remind both my parents of that, saying to Dad that
‘in the most horrible twist of circumstances, he freed me from sleepwalking through life, in a corporate-ladder career’

Feel free to ask me anything, or message, I’ll try to answer when I can.
Take care

Hi Nikki Ann, welcome to the forum. Parkinson’s seems to affect different people in different ways. Is dad affected physically, mentally, or both?
Are you caring alone, or with help?
Have you claimed all the benefits he’s entitled to?
It’s so important to take time for yourself, to look after your own mental and physical health?

Hi my dad is affected physically it’s his mobility and his walking and legs. It’s difficult I do try to look after myself but it’s difficult and I do feel down at times I can also be quite tired xx

Have you asked Social Services to do a Needs Assessment for dad and Carers Assessment for you?

Hi Nikki_Anne,
This is brief , but i had to say WELCOME :pray: :hugs: fellow carer !
I hope , like me, you find this space a little world within a world , where you can post or not post , read of others issues and stories…and generally feel less lonely on this caring journey.
Sending warm welcome :slight_smile:


Dear Nicki Anne
Thinking of you.
I hope today a sparkling moment happens for you.
I have been appreciative of seeing robins getting busy I for winter.
Some flowers for you :blossom::cherry_blossom::bouquet::hibiscus::tulip::sunflower: