taking some one out with pressure sores

Everyday living
1

Helllo everyone.

if i may, i would like to take a few sentences to outline the situation first.

My 48 yr old brother has severe MS and dementia and lives in a care home.

Due to reasons i legally feel i can not go into, he developed chronic pressure sores on his behind, thigh and heels and although he is now receiving the care & attention he requires (he had previously been in a care home shown on Panorama) from the excellent care home where he now lives, he is confined to bed 24/7 due to these and his rapidly developed dementia. He also has to have a peg feed, catheter etc. In addition to this, he brings his knees up close to his chest (i understand this can be quite common?).

We want to bring some sort of quality back into his life, as he often has good days and he alsways liked to be outside, enjoy the sun on his face, go and watch his favourite football team play etc. so we are looking for advice as to how we can make this happen.

We (being myself, sister, parents) have discussed this and was wondering if anyone knows if it is possbile to have a wheelchair modified whereby he can go out, travel in a vehicle i.e. adapted suv.

We have looked into hiring a box at the foolball stadium so he can watch the match from there, but it’s the getting to the place and the care he would need on route and at the match (it’s a 2 hour journey). we are thinking of purchasing a special type of wheelchair and was wondering if anyone knows of such a service, whereby they would consult with the care home nurse to establish Michael’s condition and his requirements. we have spoken to the care home and they’ve agreed that we could have a nurse accompany Michael (as his peg feed can only be administered by a nurse) and the possible need for a carer to help and we would arrrange for cover at the home. As Michael needs to be turned in his bed quite frequently, ideally the wheelchair would either need to remove the need for this or facilitate Michael being repositioned with ease.

If anyone could suggest how we can go about this we would be very grateful.

(this wouldn’t be a one off trip, as we also would like to take him to the cinema, motorbike racing - his other passion and other outdoor activities where he can sit & watch)

thank you

2

Hi,

Can’t help but just wanted to say that it’s a lovely idea to improve his quality of life, and I wish you luck with it…

Bumping you back to the first page so hopefully someone with more experience/knowledge in this area will be able to advise…

3

i cant really help but perhaps you could try some disabled charity they offten run outings and may be able to give you some advice, my friends dad is in a wheelchair and has to be peg fed and they offten go on trips and holidays with a group called jumbalance trust and they get treated very well . sorry not more help but i am sure your brother will enjoy just being out anywhere with his family. Katy

4

What about getting in contact with your local Red Cross and ask if they can suggest anything. Also I have seen taxis that have a disabled part for a wheelchair. I live in Bournemouth. Hope this helps or,perhaps get in contact with MS helpline you can google for the free phone number. Regards and hope you all enjoy it.

5

MS Helpline - 0808 800 8000

They are extremely helpful and if they don’t have the answers, they can most likely point you in the direction of people/organisations who can help.

PG xx

6

Have a look on the Leonard Cheshire Disability website. I worked for them years ago. They may offer services in your area. Good luck x

7

I congratulate you and your family on your loving attitude to your brother, sadly many people in his situation do not have such a loving family.

Can I ask if your brother has an Alternating Air Pump mattress ? It is possible to get these as cushion size for wheelchairs but you would need a power supply…maybe possible to get one with a battery back up that would last a few hours.

All the advise you have been given is good. I am not sure if they still do an ambulance service but St John,s Ambulance used to have volunteer drivers ( first aid trained so could assist as carer ) who would give up their time to take people out on trips. Often the cost of the Ambulance would be covered by the charity fundraising.

Would the nursing team at the home recomment trying light massage if your brother could cope with it, even hand massage can relax someone enough to ease the spasms which cause the knee,s to chin positioning.

Let us know how you get on.