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Something’s not right

ButterflyWings
Senior Contributor

Untitled Yet...??

Not sure how to begin with this... My Mum has rapidly-progressing Parkinson's and also non-Hodgkin's lymphoma. She lives with Dad in a retirement village. It's hard watching this illness journey with her. Every time I see her she's weaker and more frail. Wondering about advice or tips etc. Or maybe just share. Sorry...clumsy at this as I've not been on here for a couple of years...

9 REPLIES 9

Re: Untitled Yet...??

Hey @ButterflyWings - maybe @Shaz51 can share some of her experiences?

Re: Untitled Yet...??

Hello @ButterflyWings  how are you going today xxx

Has her docto suggested age care ho.e for your mum ??

I have been looking after my mum as her carer for years at home until she broke her hip in hospital,  they took her to a bigger hospital where she got a new hip and then she got an infection,  then Covid19 and now dementia 

Through doctors assessment that mum needs. High care and home was not suitable any more for her 

Finally have her back into our local aged care part of our local hospital 

Here for you if you like to have a chat xxxx

Re: Untitled Yet...??

I'm kind of okay... Where my parents live has the various step ups in care onsite so it's easier to find a spot when the time comes. Dad's having to do a lot more for Mum nowdays, which is so hard on him. They have nurse call buttons in their Independent Living unit so it's great they have help right there when needed. Since they've been there, 4 years now, they've once had to get nurse assistance from the care centre and the staff are just so lovely. Mum can't keep track of even the most usual and simplest of convos, which is so sad to see. Dad's slowly accepting that we are indeed losing Mum. The highly independent, sharp-as-a-tack spritely lady who took me on route-marches (loooooong walks) years ago is so vulnerable now and can't walk for more than 5 or 10 minutes at a time. They've both avoided COVID, thankfully. Mum's lymphoma destroyed part of her hip earlier in the year and she had a pin put in and then chemo. Talk about through the mill!
Thank you for sharing, Shaz. Sometimes people forget that families need support too. 💜

Re: Untitled Yet...??

How are you going today @ButterflyWings 

In these situations we do forget about ourselves and what we need too , I do all the time xx

Sending you hugs and am here for you 

Re: Untitled Yet...??

Hugs aplenty! Don't know how to express today. Really sad and missing my family yet too numb to cry. Thank you for reaching out 💜 Hoping today's been okay to you @Shaz51 and @tyme 💜 Yes, myself has been neglected. A little lost as to how but I guess we muddle on somehow...as that song goes.

Re: Untitled Yet...??

@ButterflyWings  no tips or advice unfortunately but wanted to say thinking of you and can relate in some way to all of that. For us the process of coronary heart failure is accelerating. 

 

Beging a process of arranging care for my father in law who is in hospital but was at home with us. Has been a roller coaster week here  not knowing how much time we have left.  Happy to 'listen' if you need .

Re: Untitled Yet...??

How are you @ButterflyWings  - how's your mum?

Re: Untitled Yet...??

It's a tough journey...is the best way I can put it. She's very physically weak. So sad to see.

Re: Untitled Yet...??

Hey there @ButterflyWings 

 

I'm sorry that you are feeling this way, and thank you so much for sharing how this experience is making you feel. I can tell that you care so deeply for your family and your mum. 

 

Please remember that as it may be really tough to go through this alongside your mum, it is really important to make sure that you are taking care of yourself too. 

 

I've linked below a Peer Group Chat that we did we few weeks ago that highlights how you can take care of yourself, while caring or looking after someone else. Maybe this is something that could help with how you are feeling if you need any ideas of how to also channel some energy into looking after yourself. 

 

Here is that Peer Group Chat link: https://www.sane.org/images/peer-support/chat-transcripts/Caring-for-Yourself-While-Caring-For-Someo... 

 

Sending virtual hugs and I am here with you, 

Amber22

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