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

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.

Cat