Hello Rubydog; am so sorry to read what has been happening to your friend.  I can understand your despair at not being able to prevent some things happening and having to watch your dear friend dying in a not unpleasant but inappropriate place.  I of course don't know the situation with his next of kin or how they are related but did wonder if he could not have been given home care with daily assistance if required.  It does appear from your description that he is nearing the end of his life and may be becoming unaware of his surroundings to some extent; however it is depressing that he could not be cared for somewhere which could meet the needs of both your friend and the people who love this man. I am sure you are spending as much time as possible with him and are letting him know that he has love travelling with him regardless of the surroundings.  Sorry I have no useful suggestions.  Annie

Hi Rubydog,

This is one of the most frustrating and heart-breaking situations you could find yourself in. A nursing home for people with dementia doesn’t sound the ideal place for your friend. There are different types of nursing homes. Some provide care for those with dementia, some for those requiring nursing care and some are just residential. The trouble is that now that he is needing more care he is possibly being put into nursing care, where there are few people to stimulate or talk to him, even if he can no longer talk himself.

Is there any way that you can influence his family to change his care plan?  As Annie says, you could get him a hospital bed at home with carers and nurses coming in 3 or 4 times a day to see to his needs. We have this for my mother-in-law at the moment, as she is currently in end of life care. This does however require someone to be at home with him in the hours that the carers are not there and I am not sure whether or not his next of kin would take on such commitment.

Is there anything to stop him from going back into the hospice again? I see many people spending time in a hospice, going home and going in and out of the hospice for months.

It is so difficult when you have no say in his care. If you cannot change his current situation all you can do is to be there for him. Even if his surroundings are not ideal, I am sure that he knows that the choice is not up to you and you will make his passing so much easier by just being there for him. It is so important to feel loved at this stage and, by the sounds of things you will have no trouble convincing him of this.

I do sincerely hope that you can persuade his family to find him more suitable accommodation where he will get the care and attention he needs.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Rubydog.

I am currently in a similar situation with my beautiful sister. She is 32 years old and after her Glioblastoma diagnosis and subsequent surgery in July we were given the awful news that she is terminal and maybe has 2-3months maximum. 

Due to the damage caused by the edema after surgery and the stroke she suffered during the second surgery to releive said edema, she has very limited movement in her left side, her memory is awful and she's at risk of fitting.

It's devastating news and in my heart of hearts I wish we could have bought her home so that she could be in the calm and quiet of her own bed in the house shes always lived, but the reality is that my parents are 60 and 75, both have arthritis and various health concerns and i dont live with them. They wouldn't be able to cope with her care needs between the nursing appointments. She'd also need a hospital bed, but their house is tiny and it would barely fit anywhere. I also worry about if she started to fit in the night, how would my parents cope with that?

I considered if i could maybe stop work move back in with them to care for her but im better off going to work because when the awful day comes there will be a funeral which will all need paying for and I'll need to step up and help my parents out more financially.

Because of this she has been moved to a local hospice and care home and she is the youngest person theyve ever cared for, every other resident is in thier 80s. They had someone recently who was 37, but it doesn't happen often and it feels awful like she shouldn't be there, however as a family we needed to make a decision based on what we wanted and what would be realistic and what would be least damaging to us all in the long run.

It hurts as a family to make that decision and every day I think she shouldn't be here, have we done the wrong thing, we should have her at home, but when we sat down with the pallative care team and discussed options, they said there is no right or wrong answer and we have to consider every single factor. 

It's awful that there is no where specifically for brain tumors or younger people, i feel if there was a facility more suited to that I would have jumped in a heartbeat.

That said because she is so young and so lovely and has a truly kind soul, the nursing staff in her care facility absolutely adore her and cannot do enough for her. They treat her with dignity, respect and compassion at all times (one of the carers comes in for a cuddle on every one of her breaks) and whatever the surroundings, dignity care and a compassion are all I want for her.

Take care and i wish you and your friend the best

Xx