New to Posting

[Lucy Forum Member Find all posts View Profile Close Lucy]

Hi Everyone

My name is Lucy and although I have taken some good advice from this forum, this is my first time posting.

My husband was diagnosed with ALS in March 2019 age 54, It has been devastating. I feel I have coped up until now but recently its been a real struggle. Its heart wrenching to watch his daily struggles, he was a hard worker who couldnt sit still but now he's a shadow of himself. He has no movement in his arms and his legs are now starting to go the same way. There's many things he can no longer do by himself and he finds it hard to sleep now as he can no longer turn himself in bed. This is such a cruel disease and its so hard watching him suffer. I always put a face on for him as I think he's got enough without worrying about me, but I see his posiitivity starting to go and I truly feel for him and anyone else living with MND.

[Doug Carpenter Forum Member Find all posts View Profile Close Doug Carpenter]

Hi Lucy

Welcome! And thank you for posting.

I hope the great empathy and support you will find here is helpful.

You’re clearly supporting your husband marvellously but, understandably, at great cost to yourself. It’s a terrible position to be in. Somehow you must try to look after your own emotional health – difficult, I know.

Perhaps this hug will help…

Doug

[Lucy Forum Member Find all posts View Profile Close Lucy]

Hi Doug

Thank you for the hug and your kind words. You all seem to be really supportive and wise on here. Im glad i posted even if it took me a while.

Lucy

[Ellie Forum Member Find all posts View Profile Close Ellie]

Hi Lucy and a warm welcome to the Forum, though sorry you needed to join.

It must be utterly heartbreaking to watch your beloved soulmate deteriorate before your eyes - often we're so wrapped up in our progression, our abilities or lack of, our daily struggles etc, that we don't have the residual energy to acknowledge the toll it's taking on our loved ones.

Have you had the opportunity to do counselling? I found it very beneficial (and I wouldn't class myself as a bare all type of girl but it was so worthwhile)

There are plenty of wives, husbands & partners on the Forum who know exactly what you're going through.

On a practical note - perhaps the right mattress would make all the difference to your husband. I can't move either and sleep on my back very comfortably on an alternating air mattress. His OT or Nurse can assess his needs and supply appropriate aids.

A big hug from me too, though it's not a patch on a legendary Doug Hug

Stay safe.

Love Ellie.

[Lucy Forum Member Find all posts View Profile Close Lucy]

Hi Ellie

Thank you for the warm welcome and advice. I haven't been to counselling because like yourself i dont like to bare all, but I do think given the circumstances it is something that I might now consider. I will also ask his O.T about a different matress, he has a matress elavator but it is of no use now as he can no longer get out of bed on his own and he has great difficulty operating it.

Thanks again

Lucy

[Tess Forum Member Find all posts View Profile Close Tess]

Hi Lucy,

Welcome and definately agree that it's tough going to make the first post, it took me a good 6 months. I've noticed recently a lot of posts with a few comments but then hundreds of views so I know there are many out there also in a similar situation who either can't contribute to a specific topic or are plucking up the courage to join in.

Counselling is definately a fantastic option as a great way to vent, get it off your chest and also to a complete stranger. I only had my first few sessions during Covid and it's helped a lot. Don't get me wrong I do still have a wee cry here and there, but a good start.


Tess

x

[Lynne K Forum Member Find all posts View Profile Close Lynne K]

Hi Lucy, as said already you are doing a smashing job caring for your husband. I’m not surprised that you feel the need to reach out and well done to have the courage to do so. As said earlier some councelling sessions are a good idea. But with the current pandemic and lots of services closed I wouldn’t know how long you’d have to wait. Maybe speak with your GP in the first instance. Hopefully they can find a counselling service that is working, with appropriate PPE of course.

Sending you a big electronic hug, love Lynne x

[miranda Forum Member Find all posts View Profile Close miranda]

Welcome Lucy. I can only imagine how overwhelming it must be for you both to cope with life with MND especially now with coronavirus taking centre stage in all our lives and limiting our normal support mechanisms. Your own health and well-being are important and it’s good to be able to let it all out on occasions instead of feeling you need to be strong all the time.

[Deb Forum Member Find all posts View Profile Close Deb]

Hi Lucy and a warm welcome to the forum from me. So sorry you've had to join but I'm glad you found us. It's hard making that first post !

It must be totally heartbreaking to watch someone you love struggling with everyday tasks and losing dignity. You are doing an amazing job of caring for your husband and staying cheerful but it must seem impossible at times.

In these times it is even more isolating for carers so I really hope you have someone to talk to so you're not bottling everything up. I know its easier said than done though to open up.

A big hug from me too and take care ,
Love Debbie x

[Lucy Forum Member Find all posts View Profile Close Lucy]

Hi Tess, Lynne K, Miranda, and Deb thank you so much for your replies and words of encouragement.

Lucy x