My name is Chris and I am 62 years old (as you may deduce from my username).
I am not sure I have fully accepted my role as a carer yet but in October last year my husband was diagnosed with Motor Neurone Disease so I think it is safe to say that caring is going to be a large part of my life for at least the next few years.
I hope this forum can help me come to terms with things. I have joined the MNDA forums but so has my husband. Since most of my issues arise from his situation, and there is no private carers section, I have felt unable to ask for anyhing but the most basic practical guidance.
All the best to everyone
Hi Chris … welcome to the forum.
( From a Chris that badly needs a shave and … just to confirm … missing the footie … and a decent pint !
Hard work this gender bit … at times … in 2019 ??? )
Extremely quiet , yet again , on here … don’t let that deter you.
How can we be of assistance ?
Caring / housing / benefits / social areas … you name it , we’ll have a go.
The forum’s yours …
Hi Chris and welcome.
Feel free to share any thoughts and emotions here. Also feel free to add to any existing threads or open up new ones. We are a varied bunch, the majority coping with elderly parents, some of us have multiple carers.
As you are at the start of your caring journey we’d recommend making sure that external help is a started asap so that hubby doesnt get used to it only being you. That help may be help for you such as cleaner, gardening, laundry what ever but the sooner you start to build a team the better.
Any burning issues?
Welcome to the forum. Ive been a carer for my husband for quite a few years now (he got ill at 25 and he’s 34 now). He doesn’t have the same condition as your husband, but I can relate to being overwhelmed and wondering about the future when things first start/things change. This is a great place to get support and advice, so feel free to vent/ask questions/etc.
I would agree getting help in asap.
Thank you for your kind replies. I had to rush out yesterday and have to do so now so will write more tomorrow
Hi Chris, I find myself in the same situation. My husband was diagnosed with bulbar onset MND in April. I also joined the MND forum but although I have found it informative, I feel that I need to connect with carers rather than people with the condition.
Please don’t use your real names, but develop a new name instead. Mine is a jumble of surname and location - I’ve never EVER played bowls!
Another MND carer here- my Gran was diagnosed in March with ALS type. You should have received the MND booklet when the diagnosis was made- it has absolutely everything information-wise that you could need. Please try and make time to read it (if you haven’t had it, the MND Association website has all of the necessary information, too).
You may know that there are no rules to the progression rate of the disease- if your husband is able to, I’d advise getting outside together as much as possible to make some memories whilst it is still possible. We left it too late for Gran because we thought, prior to diagnosis, that she had a spine issue and we feared moving her too much would cause more damage- valuable time lost and memories not made.
Feel free to PM me if you have any questions (or just want to vent, as I know how much relief it can bring just to put down the words that you’re scared to say to anyone else who doesn’t understand!)- this disease not only robs the affected of everything, but the main carer, too. Try and hold on to who you are and definitely try to take some breaks where you can- MND will become your life if you don’t.