Toileting

Hi Molly

sadly my husband passed away at the end of December but we had lots of different equipment at various times as my husbands mobility decreased. Mediequip was where all the equipment came from and was ordered by various agencies.We had District Nurses, Rapid Response, hospice all  on board. I would contact your dad’s GP for advice.Our GP was brilliant and referred us to District Nurses.I know some families are reluctant to get hospices involved but honestly our hospice was on board right from my husbands diagnosis because it was inoperable. So they contacted us and registered all our details but we could access their 24 hour help line, physios etc. you need to get as much help as possible.  My husband was adamant he wouldn’t use commode but eventually did accept after having a nasty fall in the toilet.  Good luck.

Hi MollyWoggs,

Welcome to the group and sorry to hear about your dad. Is he getting any treatment at all?

Below is my usual intro the group but I would first echo what Evajean says and I know others will say the same. I support my wife and she is now bed bound and so has travelled the entire deteriorating mobility journey. I hope this isn't the case for your dad but once my wife's mobility really starting declining after 15 months of just needing a stick we found ourselves in a race to keep up with her needs.

We have a similar team to the Rapid Response one Evajean mentions called the Urgent Care Response team. That contains physios and Occupational Therapists and they are usually the ones who will prescribe certain bits of kit. Our sitting room is full of stuff we've tried over the last few months. 

My wife was reluctant to use a commode at first and we kept it out of the way but once we just got to a point where getting her to the bathroom (although very close) was just too dangerous even with the toilet stand in there. There is something called an AmbiTurn which helps with commode/wheelchair transfers the physios ordered for us last week only for them to come out to do the training on using it but my wife now can't stand at all even with that.

The other thing this team can advise on is training family on how to help move people. This is really important as there are right ways to help people stand and turn and wrong ways and the last thing your mum will want now is to hurt her back on top of everything else.

So after you're read this do speak to the GP and try and get some of these teams involved.

Wishing you and your mum and dad all the best,

Chris

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There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.

When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.

Have you or your dad been offered any counselling at all? Either way it’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.

Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.

Hi Chris 

Thank you so much for your kind and thoughtful reply. Although this is such a terrible time, this seems like a lovely, supportive community to be part of. 

My dad is hoping to start radiotherapy next week but he is declining quite rapidly so he is meeting his radiologist Monday to be assessed again so he may not be receiving any treatment. 

We took all of your kind advice on board and have arranged a carer to come for an hour in the morning to help him washed and ready for the day, this will take a lot of pressure off my mam. There is also an occupational therapist coming next week to assess him and see what equipment might aid his mobility. 

I am so sorry to hear you are going through such a similar, heartbreaking situation. I wish your you, your wife and family all the best and really appreciate the time you took in replying to me. 

Thank you 

Hi Evajean

So sorry to hear about your husband. This is such an awful disease and I really hope he had a peaceful end, I am hoping the same for my dad.

Your comments have been so helpful and we have taken your advice on board. We have a care arranged now for an hour each morning and also have an occupational therapist coming to assess dad. 

It’s really great to get advice from someone that was in a similar situation. 

Wishing you all the best 

Hi Mollywoggs

i am going thru exactly what your mum is going thru. In my case it’s my husband. He also goes to toilet but not able to get up. Sits in a chair for shower but not able to get up. We have occupational therapist coming tomorrow and hospice carer from early next week to help him with shower and getting changed. Ask your mum to take all the help she needs. There is also therapists available for your mum. Ask her to make use of that. Much needed at this time. 
take care and sending you hugs