Where are we?

Hi Jessie welcome to the forum. I am so very sorry to hear what is happening for you and your family. Your brother will be so scared himself that he is unable to go back home. I'm.curious why they are saying Nursing Home for him as this potentially could be chargeable for him. Are their Social Workers in the hospital where you brother is currently bring cared for? If so you could ask to speak with them re the care options open for your brother. Have they considered Hospice Care? That's if you have a hospice nearby you? Sadly nobody can give you any definitive answer re time but just try to enjoy what time you have with your brother.. How are you feeling about all this? Gail x

Make sure there is an assessment for continuing healthcare under the fast track system. 
regards

Tashie 

Hi both 

Thanks for replies.

He has been fast tracked for CHC and a social worker is involved.  I did ask about hospice but it didn't seem to be am option at this point.  The palliative care nurse thought a nursing home would mean we wouldn't have to move him.

The reason I'm trying to ascertain where we are in this journey is that I would push more for hospice if it's only weeks. I believe there's only one though with very limited beds so that may be why. 

How do I feel? Heartbroken and devastated, I cry every day and this is all I can think about. I've been totally there for my brother for 9 months now and feel at the end of my tether, thanks for asking though. 

Hi Jesse

I had the same where they were trying to put my husband into a care home, and it would have been chargeable, I felt the care home was totally unsuitable so it turned to carers at home, that we'd have to pay for. On the day he was coming home the hospital rang and said they were just waiting on his meds, and half hour later rang and said,  sorry he's not coming home we went to move him and his situation has changed, no explanation, nothing.  I rang to cancel the carers and she rang the hospital and she actually told me what had happened!!! My husband had lost all his core body strength and could no longer sit up. 2 days later palliative care rang me for an appointment after I was having a meeting with Oncology. In a matter of days we'd gone from coming home with carers and physio to being told he didn't have much longer too live. Palliative care did ask him where he wanted to be and he said at home. Ambulance assessment for access didn't happen, so more days in hospital, on a ward he shouldn't even have been on. We were then given the NHS funded care and they sent carers in 4 times a day. If you able to have your brother at home and it is what he wants, I would advise to do it. I could believe how fast my husband deteriorated and I was so grateful he was in familiar surroundings with friends and family visiting

All the best with getting what your brother needs

Love and hugs to you both x

Hi

Thanks for reply. 

We did try to get him home but it failed on first night when he fell and eventually was heard by neighbours.  It was to be 4 x day carers but no night carer. He lives alone and previously extremely private and independent. 

Unfortunately I could not do more (husband with Parkinson's and an elderly Mother)

Can I ask if your husband was sleeping most of the day? My brother has been for over a month now.

Love to you too

Hi Jesse

Yes my husband was sleeping a lot of the day, but he would be awake a lot at night, this was happening since the  beginning of the year, and he was constantly trying to get out of bed, to the extent that I had to put dining room chairs at the side of the bed so if he tried to get out, as he did on the first night and I had to ring for help to pick him up, all that would happened was he would be lying on the bed and chairs. Problem is carers will not pick their clients up so ring for an ambulance in case they are hurt.He did stop doing this after a week. If that happened with your brother I'm surprised they didn't try one of the hospices as opposed to the hospital. 

Jac1966 ️ 

Dear Jac

Sounds like you had a very difficult time, so I really appreciate you replying. 

I think one of the main problems has been (in our case) the sheer lack of knowledge about glioblastoma and therefore no awareness that the EOL care may follow a different trajectory. 

My brother asked at the onset what the end would be like, the oncologist said "you'll sleep more and more and eventually slip in to a coma" this is why I feel he may have less time than our local hospital think. His original surgery was quite a distance away and his chemo/radiotherapy at another hospital (not our local one)

Dear Jessie

1. I read everything I could about glioblastoma multiform, cos I needed to know everything. It's such a cruel cancer, destroying your loved ones in such an awful way, but fortunately in between the forgetfulness, and confusion my husbands cracking sense of humour would suddenly shine through, even when we thought he was sleeping. Has your brother had many CT scans done? My husband had so many falls they'd scan him at the hospital,  because he'd still have mild seizures, even with highest strength meds. I'd look up every medical term on the results so that I could see if his disease was progressing which unfortunately it was everytime. I asked on here about different symptoms going towards end of life,  and there seems too be quite a few, which I noticed Oncology did not tell us about, but yes the sleeping and mobility skills going are definitely two of them

Hi 

I cared for my late husband and we were told the same thing that there will be more fatigue towards the end and he will sleep more. Unfortunately doctors don’t give too much detail. They also say that palliative care is much closer to people towards the end. 
May husband passed away in March 24. By Dec 23 he was pretty much sleeping except during food time and May be an 2-3 hrs he was awake in the evenings. It reduces further in jan. By Feb he was bed bound and he was awake only for food and max an hour or so in the evenings. In the 1st week of March suddenly one fay he didn’t wake up for food as well. We tried to force feed him some soup, porridge etc but then his body started refusing. He was then moved to hospice and he passed away in 3 days. He never woke up. This pattern may not be the same for all. 
Take care of yourself and try to take some me time - a short walk, step out for coffee. Whatever helps you. 
hugs and positive energy. 
you can read my complete story in my profile. 

Dear Jac

We sound alike, I've done the deepest deep dive researching GBM. I guess that's part of the issue I've probably gained more knowledge than the Drs currently looking after him, at the end of the day they probably don't come across many at our local hospital and if they do they may not see many at this stage.

As my dear Dad used to say "we'll see what today brings"

Thanks again x