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Carers UK Forum • Advice please
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Advice please

Posted: Sat Oct 13, 2018 11:06 pm
by Rebecca_18101
I have joined carers uk as my best friend’s mum has recently gone very downhill with Parkinson’s neuropsychosis and she is struggling to cope with it all. Her and her dad are caring for her 24/7 and she has been in and out of hospital over the last 3 months.
My friend isn’t in a good place at all and is now struggling with anxiety, panic attacks, not sleeping or eating. I am so worried for her, but don’t know what to do to help. She needs coping strategies and ways to look after herself.
I was hoping that someone on here could give me some ideas of how she can begin to cope, and look after herself.
I hope this is ok to ask as I know I’m not directly involved with caring for anyone. I would really appreciate any advice I can pass on to her as she is so focussed on her mum She’s not thinking of herself at all.
Thank you,

Re: Advice please

Posted: Sun Oct 14, 2018 1:49 am
by jenny lucas
Rebecca hi and welcome - of course it's OK for you to ask on behalf of your friend!

I would say the most important thing now is for your friend and her father to 'summon' all the outside help they can get. This may require your friend 'insisting' on having 'outsiders' in, which her dad (and mum) may not like. But the point is, if your friend and her dad 'crack up' with the strain, then the result might have to be that her mum HAS to go into a carehome, which I assume they are trying to prevent, by looking after her themselves.

It's so important as 'long term carers' to have 'regular breaks' and that includes the dad, and your friend - and that, again, will require outside carers coming in, to make that possible.

It's also important to 'pace themselves'. Grim though it is, they need to understand what her mum's life expectancy is now, and how her health will continue to decline, and with what severity.

Finally, for now, appreciate that your friend is also 'in anticipatory mourning' ....she is mourning the loss of her 'healthy mother' and her 'eventual loss' whenever that happens.

It's really good that she has you 'rooting for her' - there is a huge amount of collective experience on the forum, available to you, and therefore to your friend.

Re: Advice please

Posted: Sun Oct 14, 2018 9:30 am
by Henrietta
Hi Rebecca

What a thoughtful friend you are. You could point your friend to this forum and I am sure there is a specilist forum for Parkinsons as well as the all important Alzheimers Society who cover all types of dementia and I am sure I have seen much on Parkinsons on there. It can be especially important as a carer to realise that otehr people are going through similar things and that it is not happening to just your family.

I will post some links if I can find anything useful.

Re: Advice please

Posted: Sun Oct 14, 2018 9:36 am
by Henrietta

Re: Advice please

Posted: Sun Oct 14, 2018 10:06 am
by bowlingbun
Welcome to the forum,

Everyone is welcome. Your friend might find it helpful to read other posts from people in the same sad situation.

Does your friend realise that people with Parkinsons are likely to develop a particular type of dementia?
The Alzheimer's Society will provide full details.
In it's later stages, residential care is almost inevitable.
There is NO SHAME in accepting that she needs 24/7 care, it's almost inevitable.
In the meantime, your friend should ask Social Services for a Needs Assessment for mum and a Carers Assessment for mum.
This would be a good time to gather together all mum's financial information, as Social Services will need to know.
Does your friend have Power of Attorney?
Does she own her house?

Re: Advice please

Posted: Sun Oct 14, 2018 1:31 pm
by Rebecca_18101
Thank you so much!
I will have a look at those websites and pass on some of the info, she is so overwhelmed at the moment I think it needs ‘drip feeding’ to her. I will definitely suggest she looks on here- you all seem like pretty amazing people! And it will be good to know she’s not alone
Thanks again x

Re: Advice please

Posted: Sun Oct 14, 2018 1:59 pm
by bowlingbun
Dealing with a loved one in decline, for whatever reason, is always sad.
I've lost all four parents, brother and husband now. The saddest part is accepting that nothing we can do can make them "better". Our role changes to making them, in whatever state they are in, comfortable as we can.
Especially when they have lost the ability to be "happy".
It's really important too that the carer takes "time off".

Re: Advice please

Posted: Sun Oct 14, 2018 2:42 pm
by Karen Dee
Hi Rebecca, You are very welcome to join this forum. I only joined this summer and this site has really helped me.
How old is your friend? Was your friend working/studying before her mum became ill?
When a daughter/son is caring for their parent(s) it can so easily take over their lives (as you have noticed with your friend). I read somewhere that someone who needs 24 hour care will need at least 3 full time carers. So obviously, as mentioned in previous posts your friends mum needs additional carers.
You sound like a kind and understanding person so see if you can encourage your friend to do some of the things she used to enjoy doing before her mum became ill. Tell her that her mum wouldn't want her daughter to be suffering in this way. You say your friend is not eating - try taking some food to her (ideally something healthy but something she likes).
Hope this helps.

Re: Advice please

Posted: Sun Oct 14, 2018 4:37 pm
by jenny lucas
Sensible practical advice from Rhona!

Re: Advice please

Posted: Sun Oct 14, 2018 6:15 pm
by Karen Dee
Thank you, Jenny.