Practical issues

Share experiences and advice on practical issues when living with cancer, such as money, work, benefits, transport, food and drink, organising support at home, or getting specialist equipment.

Setting up bedroom for end of life care.

Arlie71
Posted by

Hi all.
Am after any practical tips on setting up a bedroom for palliative/end of life care.

I am making sure I have food and drink supplies within easy hand reach of the bed, also things like changes of clothes, medication etc.
Am getting a new mattress as current one is pretty knackered and not that comfortable for long term use.

Does anyone know good places to get the V shape support pillows or any other good comfort aids.

Any feedback very welcome.

Cheers

Andy

rily
Posted by

Hi Andy. Sorry to hear of the position you find yourself in. When we looked after my mum at home, the GP referred us to Social Services, the practical side. They were great in providing various aids at home to help us with care- a commode, handrails, bath aids, special pillows etc. You may also find it helpful to call the free helpline on 0808 808 0000 (Mon-Fri 9-8pm). They will be able to tell you what help you may be entitled to, both financial and practical. My thoughts are with you.

Arlie71
Posted by

Hi Rily,
Thanks for the reply :-)
Social Services are not involved but I did have a visit from palliative care a week ago. I am one of those strange loner types who like to just be left alone. So setting up my room on my own while I am still able to,

Any good tips from others of things to make sure I have in my room or near to the bed ?

I have had gout all my life so quite used to being stuck in bed for days and dont get easily bored, but obviously this time I wont be just waiting till the pain passes before getting out of bed again :-)

Cheers

Andy :-)  

auntyma
Posted by

Hi Andy,

I got a monthly 'Prime' subscription for a well-known online store - used it loads for getting various things when I was caring for my husband, very useful as his needs changed quite quickly. I got a V pillow from them. I never even got a chance to look at the other 'prime' benefits but if you are likely to want music & videos I believe its good for that too.

As he had a terminal diagnosis my husband was fast-tracked to highest rates of PIP, which helped to cover the extra costs - our hospice nurse did the application on a special form but I think you can do it yourself.

One useful thing was lots of baby wipes, useful for wiping hands & other bits without having to get to the sink every time. Cheaper when bought in bulk! I got lots of antibac wipes for quick & easy cleaning, and little bottles of hand cleaner stuff. You can get foam stuff for washing yourself that doesnt need rinsing off, useful for more thorough bed-washes. Also I had a spare duvet with cover available at all times, in case of spillages etc, as well as for normal bed changes every few days - he could have a fresh bed straight away without having to get up & be uncomfortable. We only had one accident, a full cup of coffee over the duvet because he was drowsy. We also had mattress protectors under the sheet, which helped in the coffee incident.

I got my landline calls redirected to my mobile as I was rushing about all the time - if you are stuck in bed away from your landline phone that might be an option. The only problem is that I wasn't getting messages left on the landline. I also got hold of a tablet computer and set it up with apps so it could be used for audio books - they can also be used for ebooks, music, TV, internet etc.

I am disabled and use an online shop which is reasonably priced for most things I've needed, https://www.completecareshop.co.uk/

When my husband was ill we had lots of things supplied by the OT attached to the hospice, including a medical bed with a special mattress to avoid bed sores and various options to raise, lower and tilt bits of it for comfort. He also had a riser-recliner armchair, commode (never used), wheelchair, walker, bath lift, over-bed table, raised loo seat attachment. I cared for him at home with as little outside help as possible but it was useful to have things supplied that we couldnt have afforded, and the OT knew about equipment options we hadn't thought of.

Arlie71
Posted by

Hi AuntyMa
Thanks for a brilliant reply.
Dont suppose you have a name for the "foamy stuff" for washing, am sure Macmillan wont mind you giving a brand name out if its helping someone out.
Will have a look at the careshop web site you linked to.
Loads of things to look at, not sure how they all going to fit in my little bedroom :-)
Cheers
Andy :-)

auntyma
Posted by

Hi Andy,

The foamy stuff was Vernacare Senset https://www.amazon.co.uk/Ability-Superstore-Skin-Cleansing-300ml/dp/B008U8QRL0/

Works out cheaper if you get several at once - also if you search in this particular store you might find some of their suggestions useful. I was also given a spray by the district nurses, which also cleans without needing rinsing. But I can't remember what that was called.

Cathe2525
Posted by

Hello Andy

Hope doing good!

I am disabled person and why don't you go for online shop which is reasonably priced for most things I have needed. Get the more mobility equipment products at here - http://www.otbathrooms.co.uk