We Talk Brain Tumours

Cathi -

thank you so much for responding, and for your huge empathy staying here with the community after your cruel loss. It has given me comfort to read how your husband kept on planning and dreaming.  I alwys talk about it with Mac as if it's all going to happen - who knows. The holiday is booked and paid for - we had such a good time last year that he insisted on re-booking immediately, (before he was diagnosed there were signs - unrecognised by me except to sigh and tut - of slight obsessiveness) and I think it gives him some sense of control to keep planning ahead.  Every other thing has been stripped from him except dreams bless his poor heart.

He comes home from hospital today - they are fast-tracking his discharge as there is rampant flu on the (essentially geriatric) ward he has been on.  I am so looking forward to having him home, but am a little scared as communications are not the greatest skill in the hospital he is in - the bed has arrived, we have been refused a hoist as he can't sit upright for the required three hours and there is only me here so I could not get him in and out of the bed between visits of the district nurse. (Although actually I feel sure I could, having seen them do it at the hospital! I may work on the district nurses ,,,) He is very disappointed that he will have to stay in bed. He had visions of a wheelchair and trips out, even if only to the garden.

I am not sure what I need to get for him. Am rushing out this morning for a bed-table, incontinence pads, mouth care stuff, food - up until yesterday afternoon one team was saying he wouldn;t be discharged and another saying he was.  I was sitting with him at eight last evening when the doctor turned up and said they have booked his transport for today but couldn't tell me what time it would be. Any hints, advice and words of wisdom from anyone who has done this would be SO gratefully received.

Wishing everyone on this journey the very best

Mary x

Mary...I dont know where you live but you should not have to buy any of that stuff. Having been on this site for a year I know that the postcode lottery is not a figment of the imagination and it breaks my heart to read of people having to use their savings for things that others get by the truck-load.

Speak to Social services, your GP and District nurses. Do you have Carers coming in? I have never heard of this having to be able to sit up for 3 hours? We had a hoist just because my husband could not sit up unaided at all..to help with toilet and transfers. I had a woman from social services who I think was in charge of Moving and Handling and she arranged commode, sliding sheets and showed me how to use equipment. Red cross will lend you a basic wheelchair for a couple of weeks and if that works you could ask for a better one. District nurses should have access to incontinence pads and external catheter(god send for us ...dont work for others)

Mary...this is the time to shout for help. Its a sad fact of life that if you dont ask and say you cant cope then they will leave you to get on with it. Ask for everything before you need it because the wheels turn very slowly and by the time you get it , you will need something else. I am sorry ...I am rambling ....but you must get all the help you can. You have got DLA and Blue badge and  Road tax?

Stay strong

Love Cathi xx

Just to echo Cathi here, I'm surprised that you're being discharged without you being aware of what the home care package is.  Assuming that you're under NHS care, you absolutely should not be coping with this all by yourself..  You should have been seen by an Occupational Therapist at hospital who should have vistited your home and arranged for any equipment to be installed before discharge.

A list of things you're entitled to (off the top of my head here):-

* Occupational therapist to make sure that the home is appropriately set up for your husbands needs.  The hospital OT will hand over to a community OT for continued support and assessment.

* The Mac nurse will help you with benefits, and should provide emotional support to your family as well as offering some advice on care/treatment.  Mac may also liase between you and the hospital.

* Social Services should engage with you and sort you out with a package of care visitors to help you attend to your husband's personal care and comfort and generally help out around the house if you need that assistance.

* District Nurses will visit as often as there is a need to.

* You're entitled to a medical exemption card which will give you free prescriptions for your husband.

* Talk to your Mac nurse about what other services that your local Mac centre offers.  You may find they have a day centre, reflexology/massage etc.

* At a later stage, you might be engaged by a Tissue Viability Nurse who will help to prevent/treat any bed sores.

* Talk to your district nurses about incontinence pads.  They probably won't be able to suppy conti-sheets (the sheets you lay on), but they should be able to sort out a supply of sanitary pads (i.e. adult nappies).  You'll get three months supply at a time from the incontinence team.

The medical exemption certificate is very important as you don't want to be paying for all those drugs.  You can also use and abuse the system by getting lots of other helpful products on prescription.  Oilatum skin cream and bath oil are wonderful for keeping the skin hydrated (far better than any of that Body Shop smelly stuff).

If friends and family want to help but don't know how, then ask them to cook for you.  I found it so useful that people cooked freezer-friendly meals that I could just defrost and pop in the oven.

Sorry, I've bombarded you here, but just wanted to tell you that you are entitled to a large amount of help at home. 

Forgot you have to pay for prescriptions in England Pete. Ask for your meds to be put in Blister packs Mary.

cathi xx

Sorry Cathi, I'm not too sure what blister packs are and why they're useful...?

We had so many  pills to be taken at different times throughout the day in different combinations that (up here at least) the chemist will put the correct dosage into little bubbles divided into morning lunch evening and bedtime. Before that I used to spend ages every day trying to sort out meds... and when you are tired and dosages change its very easy to make mistakes.....although I never noticed any changes from my slurping of 4mg dex in my coffee thinking they were sweeteners.....wait....is that what causes the hairy chest?

Cx

We had so many  pills to be taken at different times throughout the day in different combinations that (up here at least) the chemist will put the correct dosage into little bubbles divided into morning lunch evening and bedtime. Before that I used to spend ages every day trying to sort out meds... and when you are tired and dosages change its very easy to make mistakes.....although I never noticed any changes from my slurping of 4mg Dex in my coffee thinking they were sweeteners.....wait....is that what causes the hairy chest?

Cx

........And posting twice?

you're lucky to be posting twice Cathi, it won't let me, I once refreshed and it said I was trying to do multiple posts, perhaps it just knows which of us are more likely to screw up on here lol

Off out to lunch with my sister today, am now wondering if the pub/hotel will think we are "life partners" as its valentines day LOL  Hubby and I haven't "done" valentines since we had children, besides what sort of marriage would it be if you only showed you love each other on a certain day of the year.  I did get a text from my hubby at work saying he loved me and that's better than any overpriced crap you can get in a shop.  Tonight we will celebrate by........going to karate, it is Tuesday afterall ;-)

Sending love & strength to those who want or need it and waving hi to all the new people who have joined our journey over the last few days, once the kids are back at school and my amazing social life has calmed down (its not usually like this, seems our invitations to go out are like buses........) I will no doubt be gracing the boards once again, more often than you will probably want!

Thank you Cathi, and Pete - this is an immense help. I have phoned the hospital discharge lady to try and clarify some of this stuff - apparently the district nurse will be calling in at 3 this afternoon, so I can talk to her about some of these issues. He would  really like to be able to sit in a chair for meals i, and maybe use a commode if it can be managed. He hates the  bedpans!   I have also been told they will be calling three times a day. I don't have a Macmillan nurse assigned, I asked the hospital about it and they said speak to the district nurse.

I am constantly getting the reaction when I try to speak to someone that 'someone will phone you'.  To date no-one has ever phoned me, except a nurse on the ward to say that Mac can't find his signet ring. I let him have it every day to wear in hospital, as he asked for it, and I stupidly forgot to bring it home with me yesterday.

I have been trying to get through to change him from earnings & support allowance to DLA but keep giving up on the eternal wait for fear someone else may be ringing me! Unfortunately I don't drive, but I do have very helpful neighbours and a daughter not far away.

I have a bag of incontinence pads now.  They are just for back-up really. He is catheterised, they asked him if would prefer not to be and he decided he felt more comfortable and confident as he was, and he asks for and uses a bedpan. I wanted the pads in case I needed to go out and leave him with a 'sitter' for a while occasionally, so he can not worry about any accident.  I have got a bed-table. I have a Valentine's Day Dinner lined up of things I know he can eat and also likes to eat!

Wish us luck, and thanks again for the prompt response.

Mary x

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