Hi, I just read your post and I have leukaemia and have refused a stem cell transplant due to feeling so ill, so my time is limited. I think your nan is extremely scared, it’s extremely frightening for some people to accept the end of their life is coming sooner than they probably thought it would. It may not help but just be as supportive as you can, which I am sure you are being. Sometimes speaking to a psychologist can help, I found it did as you can say things to a stranger that you might not want family to hear. Just a suggestion. Good luck.

Dear Joannagrandaughter,

I am sorry to hear about your Nan. I can sympathise with your frustration of wanting to help your dear Nan and her not accepting the help. The close late friend who I helped had lung cancer and had always been very ‘independent’ but had help from us more so over the years as became older/ill. It did totally take over, she did not realise how much care she needed, as she was ill. It It was stressful as when help was rejected or eventually when she had to accept carers it was a bit difficult as they were critised to me constantly. She gained a pressure sore which could have been avoided (slept in electric recliner, could not sleep flat due to chest, no suitable pressure cushion for recliner provided, the one she had been given would not use). 

What I would say to you is you are and will do your best, sometimes they just won’t accept help, sometimes gentle persuasion has to be done (for example refused to go to main hospital but managed to get her to a ‘day’ assessment hospital which I knew they could not keep her more than a day under the pretence of going for a chest xray initially).

I think that my friend feared the hospital bed as its more ‘real’ that you are ill plus she had a extended unexpected stay in hospital, in the end by the time she agreed she only used it for two nights before back to hospital then nursing home for palliative care. She had come to acceptance she could not go home by that point after the last crisis. If your Nan is spending large amounts of time sitting not moving much then pressure sores are the thing to be aware of, try and a get a special cushion if she will agree, GP can refer for occupation therapist assessment takes time but they are hot on pressure sores (district nurses help) . My friend slept in an electric recliner (could not lay in bed flat due to chest) for a year, got a sore due to lack of movement as got poorly. 

When my friend had to have carers she had no choice after hospital stay, she reluctantly agreed but made it known was not happy but one or two she liked, others she did not.

Would she accept say a ‘cleaner’ who happens to in time make lunch to start somewhere, to not say ‘carer’ but ‘cleaner’ might be more acceptable as Grandad cannot do it etc build up to moresupport?  Or say perhaps your Grandad wants someone to come in make lunch to make it a bit easier, the visit would not be too long, moral support for Grandad too. I specifically picked a care agency that also did paliative care so if as things changed they could adapt things (in the end she went in to nursing home for palliative care). 

Sorry I have rambled quite a bit, but you are certainly not alone in dealing with someone who does not want help but you know will need it. You are doing your best, vent here anytime take care x

Dear Kevin,

I am sorry to learn of your condition and I agree with what you have said. I feel sometimes I got bogged down in the day to day worries of managing care/physical side of things when actually mental health support is very important, my friend was frightened too. 

Please Take Care x

Hi Joanna,

I can empathise with your family's situation as my in-laws were both unable to cope and refused help to the extent that they didn't report a major stroke experienced by the husband who was the main carer because they were afraid they'd be put in a home. They lied to their GP and said they were coping and eating well etc.

Your family could ask the GP to make a referral to social services and request a "Best Interests" meeting for your Grandad as well as your Grandma. Your gran obviously hasn't thought this through, if he can't care for her is she expecting the rest of the family to give up work and become nurses? The best interests meeting would enable an independent assessment of their needs and consider the available options.

Best wishes
Dave

Hi,

Such a difficult time for your nan and granddad plus the family. My husband did not wish to discuss pallative care when diagnosed as terminal, nor did he want to accept help from me though I did the best that I could when allowed.  Sadly he learned that he could not 'do it alone' and following talks with his medical team both at the hospital and his GP we had to involve social services so that he could have his wish of being cared for at home using the wonderful comminity nurses in his final weeks. He too refused a proper cushion for his needs and paid the price of a pressure sore and finally gave in to the need for a hospital bed downstairs when his legs could no longer carry him though this was needed for a very short period before his death.

Perhaps if your granddad was to admit to her that he needs help too this might make things more acceptable but hope the suggestions of others here will help.  

It's hard and very emotional but always remember that you are doing as much as you are allowed to do given difficult circumstances. Explaining the problems to her GP(she will need to give her permission for this) could help her understand her own needs at a very frightening time. All the  best and do come and chat on the forum if you need to.Jules54