Hello
Has anyone successfully applied for a disability facility grant from their local council?
Hello…yes and no! I got a partial grant for a ceiling hoist and the MS local branch kindly gave me the rest. An OT agreed I needed a wet room 7 years ago. She fast tracked me and they said they would fund the work. A year later I rang to ask where I was on the list…I was gobsmacked to hear I was number 161!!! We got a bank loan! Good luck.
In the space of a year, my husband went from occasionally walking with a stick to completely bedridden with an air mattress, TOTO, ceiling hoist and wet room. We have a wonderful social worker who really fought our corner. After we’d struggled for a year with still no sign of the alterations being done, our local mp got involved and that really speeded things up. Our social worker has fought for funding for 4 weeks respite per year-not, he tells my husband for you, but for your poor exhausted wife! This is a huge bone of contention with hubby cos he doesn’t think I do anything! I’ve had colleagues, friends and even family say how lucky I am not to have to work! After falling down with shock, I always say do you know why I had to give up a job I loved and a life I loved? When I worked, I had job satisfaction and clocked on and off- now I’m on duty 24/7-even when hubby is in respite! Respite which is hard earned cos he gives me hell before, during and after but even after all that stress, I realise just how much I need a break and it makes me a better carer. We must never feel guilty (easier said than done, I know) for having just a little me time! It’s not a luxury, it’s an absolute necessity! This is a long haul journey and we will suffer burn out if we don’t look after ourselves. We had a lovely counsellor at work who really made me think when she said be kind to yourself, you are going through at least 3 types of grief-added to losing your dear brother for whom you’ve not grieved properly due to being thrown into the chaos that is MS! She said you’re grieving for the husband you’re losing, the husband/wife relationship and the life you love. Cancer took my gorgeous brother and he refused to let it take over his life and that is the same as my attitude to MS. With hubby’s SPMS we know that things will only get worse so I try to be positive and make the most of every day. It’s really hard because he is very difficult to motivate and always been the pessimist and I have had to accept that some days are really black and he’s best left alone. Just stepping outside the front door and seeing the start of spring, the wildlife and flowers lifts my spirits. I never did stress about the little things, unlike hubby. If I can do something about a problem, I do but if not, I know that stress ramps up my ibs and then I’m no use to anyone which really gives me something to worry about! My best advice is to be kind to yourself, don’t feel guilty and do whatever you need to do to get through the day! Sending lots of love and hugs to everyone-above all remember you’re not alone and this forum is a fantastic safe non judgemental place to let off steam-which we all have to do every now and then! Xx
Hi Julie, what a lovely lady you are!
My hubby has been my main carer for 20 years.
We`ve had outside carers coming in for 9 years…starting with 8 hours a week and now 26 hours, plus 2 sleepovers.
At first my hubby wouldnt hear of it but now we both see how much we benefit from them.
Would it help if you had carers?
I take respite ebreaks and hubby does enjoy them!
Boudsx