Acute Disseminated Encephalomyelitis (ADEM) Support Group

Living with ADEM


#1

I have been away from this site for quite some time - the worst thing I could have done. Sometimes in the depths of despair I do not do the things that would help me most. Due to our circumstances I have had to ask for some financial help and you can follow my link to discover more about this: http://www.gofundme.com/9ru35g.

I am ashamed to say I feel an absolute failure and have spent some time feeling sorry for myself and grieving for my husband. Where I had an energetic man, with a fabulous sense of humour, a hard worker who ran companies, had a photographic memory and a high IQ I now have a man who shuffles around and does virtually nothing all day. He has aged terribly and still has balance problems. He has had continuing urinary problems. It seems being catheritised for five months has taken its toll. He had bladder stones removed earlier in the year which has alleviated his symptoms somewhat. He is impotent.

We have been married 36 years and have always felt we were soul mates. I now grieve for the man I had but who is no longer with me in any form I recognise.

In the beginning there was so much happening that our time was taken up with learning about his situation and finding solutions, hospital appointments etc. However, after nearly three and a half years now he seems to have given up - or that's what I thought, now I think he does not always have understanding or comprehension of his situation.

He does not care how he looks and it is an absolute fight to get him in the shower. He continually wears dirty clothes and although I take them away and wash regularly, he seems to have wrecked his clothing to the point that it doesn't matter what I do.

My parents have sent me a ticket to visit them and so I am going to have approx 1 weeks respite care and our 32 year old son will be with him. Rob seems to have lost some comprehension and understanding of situations and is very negative. Initially we put it down to depression, and although that is still certainly a factor, I am sure there is something else going on.

I have taken him for walks with me, but now he tries everything he can to get out of that. It can also be an issue because we are looking for a toilet every few minutes.

I think this blog must be all over the place. Please help me. I look forward to all suggestions and thoughts. I need a good laugh, some hope and the skills to bring my husband back as far as I can.

I intend to be a regular from now on, and while I am asking for help now in a somewhat jumbled way, I am hoping in the future I will be able to share my insights.


#2

Hi, bobsidi, I am so sorry I did not see your blog sooner. I am so glad you posted. We just launched a Caregiver Facebook group yesterday, and I think it is exactly what you need right now : https://www.facebook.com/groups/caregiversupportcommunity/

It is a closed group, so your privacy will be protected, just as it is here. And, continue to post here as well. We care about you.