A call for advice

[Jaque]

hello all,

A close friend of mine has been diagnosed with MND.

He has been struck down rapidly and is currently in bed in a hospice. Me and his family would very much like to get him home so he can pass his last days around his loved ones.

The house has been set-up for him with a special bed in place in a spare room downstairs.
At present we are struggling to find a carer.

I am looking to find any information about getting a carer in place to care for him at home. We are based in the UK.

My best wishes with you all.

Jaque.

 

[landscape]

Hello Jaque:

Have you checked out the connections from the UK MND site?

http://www.mndassociation.org/life_with_mnd/getting_support/index.html

Do you know what kind of equipment he needs now? Is he using a Bipap?

Will you need someone during the day and at night? If one person is doing both it is extremely tiring. I find that the problem for one person is the lack of sleep. Two hour blocks of sleep are not enough!

 

[paula-jane]

Caring for someone at home with ALS can be exhausting if it is only one person. We have 24 hour home care (very expensive) My husband is from the UK and from what we have learned the two symtems are similar. Look and apply for all funded care that you can get your hands on..take everything! Ask if the hospice team will visit in the home as well. See if there is a day nurse to drop in once a day to check on your friend and also if there is a family doctor who can make a house call if needed. Gather up family and friends who are willing and ABLE to help and set up a schedule. We have found that our mum must have two caregivers 24/7. Overnight we have paid care and a family member. During the day we have funded caregivers and at least one other person (two if we can arrange it). The days and nights are long and tough but we look at it this way.. Everyone is suffering through this.. the loved one with MND, the families, friends.. no one gets away easy.. but it is temporary.. so hang in there and know that you are meeting the wishes of someone you care for and you can take that with you for the rest of your life. Make some good memories along the way.