Hi, it’s the first time I’ve come back on here for a while. LIke some of the other posts it’s noticeable how little this section is used compared to the others. I’ve seen a few familiar names though. So I thought I’d try something out, see if it gets things moving. But if not and it remains small then it’ll be nice if we know a bit about each other. (I think-you can disagree!) So here we go… My name’s Melanie and I’m a full time carer for my husband who has ppms. I’m 28 yrs old and he is 37. A yr and a half ago I closed up my business to be home full time as his ms had started to progress at an alarming rate. Now he is completely dependant on me for everything from feeding him to transfers to all personal hygiene etc etc etc. We are waiting for direct payments to be approved, fingers crossed it won’t be too much longer as I think we both could do with a break from each other every now and again. I won’t lie things are tough, not what we hoped for and too be honest every day is a battle now. But we plod on. It’d be nice to talk to ppl in similar positions who know what its like to be a carer or even the person that is cared for. So, now it’s your turn…
Hi Melanie, I found your post both interesting and something I can identify with…but I am the cared for half in our marriage. We recently began using Direct Payments and it is working out really well. I wouldn
t want to go back to before we had it. My hubby is still my main carer and has to do lots for me, some of which I find so embarrassing and degrading. I also have 2 other carers. One comes in 3 mornings a week, to get me up and sorted out. This gives hubby a break, at the time of day he finds most difficult...due to his arthritis and sciatica. Then I have my sis, to take me out once a week. We go swimming, shopping, lunching...whatever I fancy. Tomorrow I have my social worker coming to discuss more hours, as Id like my morning PA to come Mon-Fri. Wish me luck. Hope you get a favourable response to your application too. luv POllx
Hello Melanie,I’ve noticed your post for a few days now and thought another carer really ought to reply! I’ve never found this place very good for us carers [I use a couple of other carers sites for support].
My name is Terry and I’m…a lot older than youI look after my wife who has SPMS.She is unable to walk,but can just weightbear,on a good day.It’s certainly a life changing illness and I do feel for you younger people who have to cope with it.We had a good portion of our lives without the damned condition [Sue wasn’t diagnosed until she was 53, 12 years ago] but then deteriorated rapidly.Full time work to a wheelie in 3 months. We really shouldn’t have to battle for everything but then we musn’t let those in control have total control …must we? I’m finding things increasingly difficult as I get older,strains and aches and pains are more prevelant.I’ve found that the system is so different dependant on the part of the country you are in.e.g.Drect Payments.If we transferred to them we wouldn’t get the hours were getting now! Yet others seem to get time for themselves [the carers that is].There’s supposed to be a Carers Direct Payment but our lot deny its existance!!
Anyway enough! Always happy to respond if you want to listen to an old 'un!!
Thank you both for taking the time to reply to my post. It’s so kind of you to allow me to peek into your lives. I think being the carer of the cared for or older or younger we are all going through the rollercoaster that is created by M.S. We are still waiting for our social worker to get back to us…which is why I have not replied sooner, free time is rather limited and I’d not had chance to come back on. So I’m sorry for the slow reply and thank you again for yours. Spk soon.