Advice please


#1

Frustrated carer.

I am apprehensive about typing this but I have to ask if anyone feels the same as I do. My mother has Parkinson’s and has done for 15 years. She is still relatively independent and likes to be doing rather than sitting.

I’m so proud of how she copes, however she can be incredibly stubborn and whilst I appreciate she is frustrated she can be very snappy towards my dad and I. We ask her to use her frame when she is tired as she is very unsteady on her feet, the frame prevents falls. However she chooses not to at times and falls occur.

Any top tips on how to gently get the message across?


#2

Whilst I understand exactly what you are saying, I am not sure how to reply. without sounding cold and uncaring - which I promise you is not the case - but the short answer there is probably not a lot you can say or do if you have pointed this out to her and she is choosing not to follow advice, even good advice. The key word here is choosing, a word you yourself used. It may not be a good choice in your eyes or mine come to that but it is her choice. It is not an easy thing to accept but no less true for that. Having said that it’s not to say you should necessarily give up but do think about how you are managing this. Try and put yourself in her shoes. If you were tired and frustrated how would feel if someone kept ‘going on’ about using the frame which could be interpreted as being told what to do. it may be worth trying to talk to her when she is not tired and you can explain your concerns. She may be stubborn but it could be that which keeps her going. One of the things I work hard at now I am in the PD club is not to get frustrated, it doesn’t help and generally makes things worse - doesn’t always work of course but I try. I know you are only concerned for your mum but be aware of how your concerns seem to her - so pick your moment to raise the issue, respect her right to choose and listen when talking about it she may feel you are being bossy, taking over, she may be tying to show herself she still can, is there an alternative she would be happier to use… Without knowing your Mum it’s hard to be more precise and I don’t know how much use my ramblings will be but maybe given you something to think about. I wish you all well.


#3

Ah Bow2, sounds like you have a situation like mine…!
My mother has had PD for over 30 years now. She’s 90. The PD is at stage 3 advanced. And she’s still as independent as she’d like to be and I encourage her too.
I came to care for her when I became a widow 6 years ago. At the time I didn’t know the full measure of the PD …
As time passed, Dad died, we were alone. My mother is also stubborn, uses a walker, stairlift, and other aids to help her. She fell and broke her hip and took 8 weeks to decide to have the operation in 2017 for a new hip.
My mother also is restless and fidgets rather than sits quietly. But here’s the thing that I’ve worked out …
Their generation never just sit. My mother doesn’t have hobbies as such so I’ve tried very hard to introduce an interest in puzzles. Mother is fixated on moving objects about, I let her do that. She has a pile of old cards/magazines/mail she moves from one side to another, then the next day she’ll do the same again…only she knows what she knows… she can no longer knit as before, and her interest in things is short-lived, but she is very insecure and this means that I have to be with her otherwise that PD depression is worse, that PD stress is worse, you name it her PD symptoms are much more heightened … so I sit with her and we talk.
Using the frame all the time is difficult. It’s not that my mother is stubborn, it’s more a question in their minds about not giving in, not wanting to accept that they can’t do this anymore. Feeling weak and a failure?
So I’ve had to study PD and it’s symptoms on Ytube and on this site and other places. I have heard the talks and read the reports. And I know my mother. With the greatest respect to her, and her dignity, I then proceed to quote from what I’ve learnt rather than just ask her or tell her to use the frame or whatever else I want her to do.
This works. She instinctively seems to understand that I know what I’m saying to her and not just nagging and she does as she’s told … !!!
PD is a dreadful disease for the sufferer and the carer. It is frustrating and annoying, and hurtful. But you are a special person for taking care of your mother and I hope that you will be able to reach her while still maintaining her independence and stop those falls.
Take care.
xx


#4

Thank you both so much for responding, it really does help to hear from both sides of the coin as it were. It is also reassuring to know I’m not alone in the whole PD situation. It is heart breaking to see it take hold of a loved one and at times is over whelming.

I realise i have to see things from my mum’s view and I do see and understand her frustration, that in i it’s own way makes me wish I could do more.

I will take what both of you have said onboard and have a think about how to approach the subject. I am as keen as she is for her to keep her independence, we won’t give in without a fight! Thank you again so much. Take care both.


#5

Hi @Bow2,

I’m glad to see that you’ve received some advice from dee and Tot. As you said, it’s good to get advice from both sides of the coin. I’m not sure if you’re aware, but we have a carers guide that you can download on our website.

It offers practical help and advice, whether you provide care and support for someone who has recently been diagnosed, or someone who has been living with Parkinson’s for a while. You download the guide here - https://www.parkinsons.org.uk/sites/default/files/2018-09/B071%20The%20carer’s%20guide%20WEB.pdf

For more information on caring for someone with Parkinson’s you an also visit this section on our website here - https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons

I hope you find this info helpful.

Best wishes,
Reah


#6

Fab, I’ll take a look, thanks Reah.


#7

Hi Bow2, just wondered how you were getting on. Do hope you have found a way to discuss your concerns with your mother, if not hope you are a bit reassured after your post if nothing else. Take care.