Carers only

Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

What Would it Have Helped to Know?

LoobyLou49
Posted by

Hi to all members of Carers Only.

I have seen time and again that many carers and their loved ones have struggled to find help when it's needed. It might be something you know now that you wish you had known 'then', or it could be something you have discovered made your loved one's life much more comfortable. If you were able to give a snippet of advice, what would it be?

I'll be putting a blog together to help those who could benefit from my research and your experiences. Even if you think it might not be important, you never know who it could help.

Love and hugs to All,

LoobyLou   Linda

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish.    What is a Community Champion?

src60
Posted by

Do not be afraid to approach PALS - they would much rather sort out problems than complaints.

<<hugs>>

Steve

LoobyLou49
Posted by

Thanks Steve,

LoobyLou   Linda

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish.    What is a Community Champion?

euphonomium
Posted by

That answers aren’t often forthcoming and that you need to ask lots of questions.

Also that things happen more quickly than you think is even possible so you should always be prepared for every eventuality!

Life isn’t about waiting for the storm to pass...it’s about learning to dance in the rain.
LoobyLou49
Posted by

Thank you ,

Everything is helpful information.

Hugs,

LoobyLou   Linda

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish.    What is a Community Champion?

cumbria-col
Posted by

I think that knowing when to ask for help and then being able to ask for it is the key. So many people seem to think they are making this journey alone but as this group shows 'we are all in it together'.

We've had the most amazing support from Macmillan, our local hospice and Hospice at Home. We even got a wheelchair on loan from the British Red Cross. We need to get rid of this British stiff upper lip and we'll muddle through idea. We all need help, some of us need it desperately. My dear wife knew there was something wrong with her body so she went to the doctor and it all cascaded from there. Don't pretend things will be ok....they won't. We are dealing with the most devious and horrid disease and we have to stick together to fight it.

To quote that stupid TV advert with the two geeks in running shorts YOU ARE NOT ALONE.

I can accept chaos but I'm not sure it can accept me.
LoobyLou49
Posted by

Thank you ,

It's good of you to share at a painful time and you put it so well.

Thinking of you,

LoobyLou   Linda

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish.    What is a Community Champion?

Emsar
Posted by

A tiny little thing I found out today, regarding eating.  Hubby has been on porridge, rice pudding and the like for a couple of days since being sick with chemo.  I (wrongly, I know) haven't really had a proper meal just for myself.  Today, I did myself beans and egg on toast for dinner, and guess what hubby fancied for tea?

Note to self: When hubby's had a couple of not eating properly days, cook myself a meal that I know he loves...

Emsar x

LoobyLou49
Posted by

Hi ,  a good tip. I'll include that.

xx

LoobyLou   Linda

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish.    What is a Community Champion?

Psymon
Posted by

Hi LoobyLou,

Maybe the following is helpful:

Prior to her surgery, my love was virtually bed bound due to pain and the weakened state of her femur. She was very unsteady on her feet. So a fall when going to the bathroom for the loo or to wash etc. would have been catastrophic.

We found it very helpful and reassuring to in effect perform a risk assessment before each such excursion: 1) Review where you are going and look for any possible hazards, it a hazard is identified, remove it if possible and if not, determine how best to mitigate it. 2) Think through exactly what equipment you will need, such as toothbrush, loo paper, soap etc. and make sure that what you need is to hand where you need it so that you will not have to leave the person unattended. 3) Think through exactly how the task is physically going to be performed; what movements will be required. This was exceedingly useful when helping my love take a shower. We had a bath board but had to be very careful in exactly how she would transition from standing to sitting on the board safely and showering. 3) Carry your mobile at all times and make sure there is sufficient charge. You do not want to be running around trying to find your phone if a serious problem has arisen.

This does sound a little like overkill, but after a couple of times it becomes second nature and it hopefully will ensure that everything is as easy and stress free as possible.

Peace and best wishes.

LoobyLou49
Posted by

Hi @psymon,

Thank you, that's all very useful and not at all overkill. Tips like this are so important in helping others to be more prepared. Anything else you can think of; it's all gratefully received.

Peace and best wishes

LoobyLou   Linda

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish.    What is a Community Champion?

MCJF
Posted by

A few things I’ve learnt over this last year while caring for my daughter, I hope might be helpful to others.

Keep an emergency bag ready in case of a sudden need to go to hospital. In it we keep pj’s, spare wash kit, a days worth of pills/patches, stoma bag change, medical notes, phone charger, a book, and some snack food and drinks (the last mainly for me as the hospital food outlets only keep basic hours!)

Always take a days worth of pills and stoma bag change whenever you go out as if the outing’s going well and you want to stay out longer you don’t want to have to return home because you’re short some meds.

We voice record all appointments with oncologist and various other doctors/surgeons (with their permission) as often we forget or can’t take everything in and it helps to return to it. 

We were put in touch with a palliative care nurse from the local hospice who now visits regularly and sorts out any problems with pain meds. She can up the prescription or add/change meds as needed without us having to visit the doctor each time. I would advise anyone caring for a terminal cancer patient to seek out your local hospice for this. 

I’m sure there’s more I can’t think of at the mo - oh yes one that’s just occurred 

Before/after chemo or radiotherapy drop off and pick up at the car park entrance if it’s a multi storey one, as driving round and round multiple bends doesn’t help if your loved one feels nauseous from the treatment! 

XxX 

MCJF

Robbierob
Posted by

The over night bag is something I’d not really thought about but will do this week, I need to think if I’ not available then what information is needed!!!!! We got an upto date medical history last week at no charge form our doctor ( need that for travel as well , even for 1 night away in a different area at A andE  ,NHS  patient   Number  ) I’ve got a list of medications / symptoms/   Observations  And times on a printed spreadsheet so will move that to the front door along with the jic kit and the DNR form ( does anyone take it out with them , either on your loved one or in the car ! Etc ) ( I like the idea of 1/2 day spare meds REALLY easy ,and will save so much stress , also £2 power pack from most stores / petrol stations 30 min talk time got your mobile 

LoobyLou49
Posted by

Thank you ,

Some good tips here.

xx

LoobyLou   Linda

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish.    What is a Community Champion?

LoobyLou49
Posted by

Thanks ,

Spreadsheets and up to date medical history. Excellent. The power pack too, nothing worse than being out and hospital unable to contact you because the phone's out of charge.

Many thanks,

LoobyLou   Linda

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish.    What is a Community Champion?