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  • #194132
    denial about help needed

    my son has EDMD ,he lives alone in a sheltered flat , been there 8 years with me going in once a week to clean ,he is 38 and fiercely independent, uses a walking tea trolley to get around the flat and has a small light scooter to go along the corridors of flats. He has deteriorated physically and now seems hardly able to stand from edge of bed to hold onto trolley.He needs help with cooking,but chooses to order takeaways mostly and Iknow he takes ages to get dressed,he needs someone to help him get dressed/be in the flat while he showers. does anyone have direct payments topay for care to keep independent? How does it work? I need to start talking to him before he suddenly cant walk .Outside he uses a 3 wheeled walker which is too flimsy,but he wont consider a powered chair.

    Posts: 0
    Joined: 22/04/2021
    Reply To: denial about help needed

    Hi Cherryblossom, I am 47 and have EDMD based in the UK. I live with my wife and 2 children so can`t comment on the direct payments to carers, without support from my family most tasks are difficult and especially during the last year my mobility has got a lot worse, I now use a stick when out a lot of the time or use a scooter when going out!
    It has only been the last year I have began to accept help, it`s not been easy as I am very independant but was feeling isolated from my own family so have finally swollowed my pride and it has changed how I see things, it is not a easy process I have fought against for years but the idolation/lonelyness was getting too much, especially with sheilding due to COVID.

    It may be a idea to contact your local neuro support team as I have found them great, even during the last year. The thing is he needs to want to accept help and I from personal experience know how hard that is :new:

    Posts: 0
    Joined: 16/11/2015
    Reply To: denial about help needed

    Hello CherryBlossom. I too found it hard to accept having to use a scooter to get about, I fought it for years. Once I got it I have lots of fun, and rest for important things like getting dressed etc. Too many good stories to tell here. Suggest renting one for a day and see how he finds it. Once tried he will never look back.


    So many love songs, so little love.

    embayweather embayweather
    Posts: 8
    Joined: 02/11/2015
    Reply To: denial about help needed

    Hi and welcome to forum

    Your gp can refer your son to social work for a direct care budget assessment. And yourself for a joint carer assessment. (Some councils also have a self referral form on council social work section)

    During assessment they will note how he moves. What his safety needs are. Personal care. cooking. ability to feed himself. Any support in community ie getting to appointments. Shopping. Risk factors like falls. Any cardiac or breathing issues. Is it emery draifuss? Dislocation high on risk factors.

    Depending on council there may be a financial assessment. Again depending on council, it will depend on rate of contribution and if they fund some social care support as well as personal care.

    One budget is agreed you can engage council or an agency to provide carer staff. They will take care of insurances payroll and hiring but you wont have choice of who or sometimes when they call.

    I hire my own carers which I interview and train myself. My payroll is done via accountant who specialises in care budgets. I buy annual employer insurance which comes off my budget. If staff is ill etc I need to arrange my own cover.

    Often people opt to start with council or agency till they get into a routine. Especially while its all new.

    It might be time to ask for a Occupational therapy review to look at his sit to stand. Walking and walking aid. His walker maybe simply wrong height now for him. I need a high lean walker. Other thing to consider is although walker seems flimsy. Its maybe light enough for him to move. But maybe time for an update of similar weight.

    Its hard to suggest when we should start using wheelchair. Its a massive step but one I wished I had taken many years before I did. I used a scooter initially but fully embraced wheelchair freedom quickly as wheelchairs are accepted inside stores. Buses and restaurants more than a scooter is.


    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Posts: 1,002
    Joined: 20/09/2010
    Reply To: denial about help needed

    Maybe best to leave it to him to decide when he needs more help, I understand as his mother you want the best for him and have his own interests at heart but mentally he is probably still coming to terms with how his situation is progressing and by ordering take aways rather than him cooking or not being able to cook is a way of him adapting to his condition while trying to remain some what independent. Its good you are looking for what he is or could be entitled to regarding extra supportive care so when he decides more help is needed you all ready know what is available.

    Hope all works out best it can

    Posts: 0
    Joined: 01/01/2020
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