We Talk Brain Tumours

Whats going on??  I leave the Country and one and a half days later get on line only to find almost 4 pages to catch up on!!

Sorry there are more newbies but glad you have found us.  Mary, you should have a full discharge package in place before your hubby comes home.  If you ahve any concerns phone the emergency social work team - they can als arraange care package and equipment very quickly for you.  Phone the local hospice and see if he can be assessed by a mac physio.  Don't be shy about asking for help.

Lynda - loved your approach.  I got the CEO email address off the hospital website and would send him emails of complaint if I wasnt happy with my husbands care.  Even got to the point of having him bleeped whilst I was on the ward if I wasnt happy.  Care improved no end!

Pam - you are beginning to worry me.  When did we change from virtual wine and chocolate to tea?

Pete, hope the weekend wasnt too painful

Love to everyone from a pleasantly warm USA.  May not get back on till I can home on saturday but will try

Joanna xxx

Hi Naomi You'll have to excuse me as this is my first time posting on a chat thing like this so I'm not sure if I am doing it right or not, I'll soon know I guess! I'm so sorry to hear about your dad, i hope you are coping as best you can. your story has struck a chord with me as my wonderful dad is 65 and in october was diagnosed with a grade 4 Glioblastoma. As I'm sure you can imagine we are all devastated, my dad has not long retired and has not even begun to enjoy a proper retirement as my mum who is 60 was just about to retire. Dad has had surgery and has now just finished a 6 week course of radiotherapy and chemotherapy but he is very tired and his mobility has really decreased, his balance is poor and he just looks so frail and as if he has aged 10 years in a couple of months. We don't know what the future holds, some days I try to be positive and other days I just cry. My children are a tonic to dad as they cheer him uk no end and I try to spend as much time as possible with dad and also making sure that my mum is ok, the thought of what she will be like if something happens to dad is almost as unbearable as the thought of losing dad. Why do these things happen to such wonderful people? I guess lots of people ask this question hey? God bless Naomi Susan x

Mary – you should push for a hoist. I spoke to our District Nurse about your situation today and she told me that different authorities will have different rules. That wouldn’t be a barrier in our part of Hampshire so it can’t be based on any medical logic at all. Tony can’t sit up straight for three minutes, let alone three hours but the hospice arranged one for him, no questions. Tony flatly refused the bedpan so they were given no choice really. The other option of letting him soil the bed just wasn’t an option obviously. Maybe you should tell them that he is refusing the bedpan and see if that changes their mind.

If it helps, this is what we were given:

1 x commode (which we used to move Tony around the house as well as a toilet)

1 x shower chair (never used as Tony had physically deteriorated too much to use a wet room before the builders finished building ours).

1 x rise and recline electric chair (with air flow cushion)

1 x over the bath swivel shower chair

1 x hospital bed with airflow mattress, side protection bars and bumper cushions.

1 x hospital bed table

1 x zimmer frame

1 x rotunda for helping to transition

2 x banana boards

1 x electric indoor wheelchair (never used as Tony became very anxious when he went forward or backwards –so the kids used it to whizz about on when bored)

1 x manual wheelchair (which was measured and adapted to Tony’s specific needs).

2 x raised toilet seats for the existing loo.

1 x electric hoist

 

What I needed/introduced in addition (that they don’t seem to supply):

Latex gloves – I go through a lot of these. I bought a case on the internet. Much cheaper.

The carers told me to buy Huggies Dry Nites mattress protectors – they are the ones used for children who are potty training. There is another brand too but I can’t remember the name. They are the cheaper option and do the same job as adult ones at less cost. They fit comfortably over a single bed mattress. I also bought two washable mattress protectors but don’t actually like the material as it’s harder on Tony’s skin which is now uber sensitive. The Huggie ones are perfect and really soft on his skin.

I bought some incontinence pants but found them to be very inconvenient and Tony found them uncomfortable. He decided that he would prefer to go commando and just keep a sheet over him to protect his modesty when visitors came. Much easier and healthier to let the air flow around his body as much as possible.

Flannels – loads of them. Half white/half dark colour. The carers use the dark ones to wash Tony below the waist and white ones for above the waist. Same prinicipal with towels too.

Sip cups – Tony has a very shaky hand and can’t hold a cup by himself now. I bought mine at the local mobility shop but they were expensive at £6 each.

Little medicine measuring cups. Tony has much of his medicine in liquid form now so I use these a lot! You don’t need to buy them but make sure you keep hold of any that come with bottles of medicine as you may need them at some future point.

Antiseptic barrier cream – Tony’s inactivity meant that he wasn’t lifting his arms up much which created the right environment for fungal infections  in his armpits. So now instead of deodorant the carers put antiseptic cream on. Seems to work.

E45 cream – carers put this on his skin at every visit (four times a day to keep the blood circulating around his skin).  They also use a lovely coconut moisturising cream to massage his tummy in circular motions to stimulate the digestive process which also can be a challenge when you’re in bed for prolonged periods.

Vaporiser (Boots do a good one that you insert tablets into); tiger balm for his chest, Benylin chesty cough – this is just me trying to make sure that the build up on his chest is kept moving, thus avoiding chest infections. It’s a common problem in people who are bed bound apparently so I’m just trying to keep on top of it. Probably a bit OTT but it keeps me occupied!

I’ve found the following site quite useful for things and they do a next day delivery: www.incontinencechoice.co.uk

Well, this started out as a list and turned into a history of Tony’s care plan!! Sorry, but have decided to leave it in just in case it was useful to you in any way.

In terms of funding – you should ask your District Nurse to apply for Continuing Care. If this is awarded then your local Primary Care Trust will fund all of it. Tony was awarded it a long while ago now so I see no reason why you shouldn’t get it too if you haven't already got it.

With much love to you and Mac and I hope he is now home and comfortable.

 

Pam

x

Mary - forgot to mention. The care plan Tony has is as follows:

7.30 a.m. - 2 Carers. 1 hour.

11.30 a.m. - 2 carers. 45 mins.

4.30 p.m. - 2 carers. 45 mins.

8.30 p.m. - 2 carers. 1 hour.

 

Night sitters - Mon, Tue, Thur, Fri - 1 sitter stays with Tony overnight from 10.00 p.m. to 7.00 a.m. They stay awake, not sleep and come and get me if they need to ask anything but their main purpose is to ensure that I get a good night's sleep.

Respite - I get six hours a week that I can take anytime and in anyway that I like. As we've just moved to the @rse end of nowhere I have decided to take all six hours at once so that I have the opportunity to drive somewhere that at least has a cinema! Two carers come and sit with Tony and look after him.

Check out your local cancer support charities. There is one near me which provides massages, aromatherapy, a cup of coffee and a chat to those carers that need it. I haven't made use of my local one yet but I full intend to when I can organise myself. 

Hope this helps to give you an idea of what you may be eligible for. You never know you may be in an area where you can get even more! I struggled along for ages with one carer for half an hour a day. Tony is 6ft tall and weighed in at 118kg. So every visit to the toilet was a challenge. It makes me angry when I think of it now that nobody told me I could have had so much more!

Good luck.

Pam

x

Mary - forgot to mention. The care plan Tony has is as follows:

7.30 a.m. - 2 Carers. 1 hour.

11.30 a.m. - 2 carers. 45 mins.

4.30 p.m. - 2 carers. 45 mins.

8.30 p.m. - 2 carers. 1 hour.

 

Night sitters - Mon, Tue, Thur, Fri - 1 sitter stays with Tony overnight from 10.00 p.m. to 7.00 a.m. They stay awake, not sleep and come and get me if they need to ask anything but their main purpose is to ensure that I get a good night's sleep.

Respite - I get six hours a week that I can take anytime and in anyway that I like. As we've just moved to the @rse end of nowhere I have decided to take all six hours at once so that I have the opportunity to drive somewhere that at least has a cinema! Two carers come and sit with Tony and look after him.

Check out your local cancer support charities. There is one near me which provides massages, aromatherapy, a cup of coffee and a chat to those carers that need it. I haven't made use of my local one yet but I full intend to when I can organise myself. 

Hope this helps to give you an idea of what you may be eligible for. You never know you may be in an area where you can get even more! I struggled along for ages with one carer for half an hour a day. Tony is 6ft tall and weighed in at 118kg. So every visit to the toilet was a challenge. It makes me angry when I think of it now that nobody told me I could have had so much more!

Good luck.

Pam

x

Wonderful advice, Pam. You've become an expert and im so proud of you..! Regarding e45, get your gp to prescribe oilatum cream and bath oil. We found that it worked incredibly well on Ali's tender skin. Steal some for yourself too, its very good gunk!

Joanna

I never drank tea until recently. Hated the stuff. Couldn't understand the English preoccupation with it. Then I went to see a medium who told me that my Mum was with me at home all the time. Since then I've been drinking it all day. Just like my old Mam used to. I think I'm obviously channelling the spirit of the old girl herself. It was her answer to everything - a good old cup of tea.

I have to admit, I had one glass of wine on Sunday and felt like I'd been out on a bender when I woke up on Monday. Am such a lightweight these days.

But yes, that's not excuse not to get back on the virtual stuff. Having a sleepless night (obviously) so may crack a bottle now.

Pam

x

Pete!

Steal? Me? How very dare you!?

;o)

xx

LyndaLynda

Calling Equipment Services? Emailing consultants? Genius. Loving your work.

Obviously so good they named you twice!

Pam

x

Aaah Pete

Ta muchly for saying you're proud. To be honest, I find that it doesn't matter how much I do I'm always looking for the thing I may have missed! So there's never a sense of satisfaction in a job well done.

Such is the life of caring for a loved one I suppose.

Pam

x