We Talk Brain Tumours

Joanna - thank you for that advice. We have the choice of two nursing homes but one of them has a dementia unit on the floor below where the residents are effectively in lock down and we don't feel comfortable with that one. Once we have made our final decision they will come to the Hospice to see if it is suitable for him and vice versa. Once again, I will try and pass on your information to mum but she's prickly and very sensitive about the subject so I feed it to her in dribs and drabs ...... How lovely of the Hospice to write to you. It is very thoughtful that they didn't do it immediately afterwards but left it a while so it would hopefully be a comfort to you, although it is bound to be a painful reminder. I took £10 worth of biscuits to the Hospice today. A pitiful gift really but all tea, coffee, biscuits etc are free at the Hospice and it's nice to try and give something back.

SWorthey - poor you and poor your mum. Please don't feel bad - before dad went in to the hospice both he and mum looked like they'd gone ten rounds with Frank Bruno they had that many bruises. I did ask if dad will go back to the Hospice to die but no, apparently he won't as the home offers end of life care. My preference had been for him to die in the hospice as I witnessed how they dealt with a death last week and I was really impressed. I'm not even sure if the nursing home offers 24hrs a day visiting .... So much to think about.

Onwards and upwards hey. Love to all.

Naomi.xx

Has anyone heard from Pete? I hope all is okay with him and Ali.

Naomi.x

Naomi, mum honestly tells me not to mention it again as it doesn't matter but it hurts inside when you try to help and end up making a situation worse.  Oh for sure I have banged her wheelchair into stuff but that hasn't hurt her just jolted her and, dare I say this, I have bumped her head as she has no feeling or sight in left side, she can't judge doorways or stuff so we have had tiny bumps but this was awful and I totally understand your mum trying to get your dad up now.  I just couldn't do it, luckily dad was there and we got her up but gosh its awful, makes me nauseous when I think of it.  How your mum has managed at times, I do not know!

Just before we left the hospice, they asked mum where she would like to die, it wasn't nice and when reading the paperwork they gave me last night, I found a DNR which states they haven't discussed it with her as it would  be too distressing but they sent her home with it!  Told me to put it in her hand bag and keep it with her at all times!  Goodness, she can still read, not very well, but she can!  I don't know why they didn't explain it to me when they were handing the meds etc. over to me. 

You know, I know these people do a fantastic job, and really they do, but they could do with giving you feedback forms.  We had a family meeting but they didn't tell us where she would like to die and I didn't want to ask her just yet but found it on one of the letters.

Love tand hugs to all, hoping for sun again tomorrow

Sharron xx

No Naomi, nothing from Pete and that's unlike him.  Hope too everything is okay x

Hi Naomi.  I'm fine, just been a bit awol of late.  I've just come home after a few beers and a curry with a couple of friends (Ali's parents are staying oever tonight).

Ali's regained a bit of strength and spirit over the past few days and has spent some time each day on the sofa and reasonably awake and interactive but still physically weak.  She's pretty frustrated at not being able to move around more than she's currently able to.

Sorry I'm not able to catch up with what's been going on recently, but I'm tired and had a few drinks more than I'd usually. Ali is very sleep now, so I think I'll sleep well as well.

I'll give her my piece of after-dinner chocolate in the morning.

Best wishes and comfort to all....

Naomi, I haven't posted for months now but read everyday before going to sleep, and I couldn't sleep without replying to your post. My husband died in a nursing home just before Christmas last year, 5 months after being diagnosed with a GBM4. He was in the nursing home for 4 and a half weeks, and in hospital for 4 and a half weeks before that, unable to walk or get up on his own. His specialist and our Macmillan nurse contact at the hospital had him fast tracked for NHS continuing care which meant we didn't have to cover the cost of the nursing home at all. The Macmillan nurse sat me down and ran through the options with me and we came to the conclusion that a nursing home would be best, coming home would mean two, maybe three half hour visits per 24 hours, which would have meant a lot of time to be caring on my own, the hoist they could provide however took 2 people to use it. By him going in to the nursing home meant I could continue to be his wife, and not just a carer, I don't regret the decision I made one bit. The care he received was way beyond what I expected, I was included on meetings between the nursing staff at the home and our local hospice nurse, we had access 24 hours a day and in the last week of B's life I moved in and stayed by his bed. The matron and senior sister both had specialist end of life and pallative care qualifications and were very pro active, having the drugs needed to go in a syringe driver before they were actually needed. My children and I were fed, looked after and supported by the staff at the nursing home. I remember after he first moved writing on Facebook that it may not be our home but it was as close to it as we were going to get. I hope you manage to find the right nursing home, as I believe it will make a real difference to your lives. Fingers crossed and big hugs.

To everyone else at different stages of this train, I send strength and love, I'm thinking of you all,

Marion xx

Hi all,

Maz, It's so good of u to offer support.  I have just been told that should G outstay his four weeks at hospice we would have to self fund nursing home. Just another blow on top of everything else.  Do you know if we ask for re-assessment via fast track that we will get continual health care?

Marion

Thank you so much for all the advice, it really helps. I think mum is being assessed for continuing NHS care as the Hospice doctor said whether or not she needs to pay for any care is based on the doctor's decision. We hope to hear by Monday at the latest what the situation is. We have been offered two homes and of course every body has different opinions so this weekend we are going to look round both.

Once again, thank you. You have made me feel so much better. I always imagine nursing homes to be full of elderly dementia patients and I hope our experience is like yours and I am proved wrong. Many thanks.

Naomi.x

Hello Pete ... how's the hangover?!! Haha!

Lovely to read such a positive post from you. Really good news that Ali is getting her spirit back. Two fingers up to GBM from her then! Can't keep a good woman down!

Hope you enjoyed your night out, thoroughly deserved I reckon.

Naomi.x

Naomi,

Thinking of you and your family very much. Now a clue with nursing homes, you will FEEL which home is the best. Look around the home, look at the residents and see if they look happy. See if they are tidy and that the home smells clean and tidy. Go by what you and your mum think about the place. My mum went into a  home before she died and it was a lovely home. I have worked in nursing homes over the years, some good some not so good, hence my tips! Like Marion has said, a lot of nursing homes are happy if you wish to stay overnight and be with your dad. Check that you can do that.

You take care there.

Julie