View Full Version : alone and frightened

8th April 2015, 13:27
I cannot no matter how hard I try get hubbie to accept that I am ill and have no chance of recovery. He cannot understand why I spend evenings in tears and when I try to talk to him about what is going on, particularly in these forums and the loss of people he just ignores me or tells me that I am being silly. Last night he was happily posting away on Facebook plans for next year, I felt like screaming at him that I dare not plan for next month never mind next year. Any advice out there as to how I can get him to understand? we have been married over 30 years and I always believed that he would be there for me 'in sickness and in health'. To be honest, I really feel like walking away from it all because it really feels like mental torture, I try to stay positive and put on a brave face in front of my children and grandchildren but each day that passes my resolve is getting weaker

8th April 2015, 13:50
I wonder if you've contacted MNDA Connect or your local hospice. They will have seen this situation before and can help you both. As for plans no one knows how you will progress. Others have felt the same only to find they're still here and could have made arrangements after all. I'm sure they will be along shortly to help.

8th April 2015, 13:52
Hello Jan. I am so sorry you find yourself in this situation!. He is denial, probably because it is too painful for him to contemplate. Does he never attend medical consultations with you? If he does, ring ahead of your appointments and see if someone will talk to him separately. I cannot talk now so, before every appointment I type a consolidated report to hand out and I make sure that peter has a copy - and reads it - then he knows as much as I do! or ring MND Connect and see if they have any advice. It is a sad week for us all with the news from Nettie and Spring - we need our partners to be "on side". Much love Joycie xx

8th April 2015, 13:55
I do get support from the Hospice Candle but hubbie totally refuses point blank to go there, he met with a hospice nurse at home but felt it was not for him and he has been to one support meeting with me. I am sure that he thinks that if he buries his head long enough it will all go away.

8th April 2015, 13:58
Thanks Joycie, he has only been to 2 appointmentts with me, the rest I have attended on my own, even receiving my official diagnosis on my own. I agree with you, this truly has been an awful week for us all and that is probably what is what is getting me down right now, I shall have to give myself a talking to, a stiff glass of something later and hopefully a good nights sleep and hope that tomorrow is better

8th April 2015, 14:30
we are In Kent in a couple of weeks for a long weekend, staying with family near Hythe. What about arranging a meet? I will pm you. Much love Joycie x

8th April 2015, 14:32
Joycie that would be wonderful if hubbie is not off to the Isle of Wight again!

8th April 2015, 17:43
Hi Jan,
Has your husband got a close friend that you can confide in. That way he is more likely to listen to the reality of your condition without the emotion of husband/wife. I wish I could offer a better solution because I believe you should not be carrying this burden alone.

Night walker
8th April 2015, 21:59
Hi jan,

I was going to ask much the same as Barry has, to ask a member of your family or close friend to talk with him.
I would also ring up MND connect tomorrow and ask them for advice. Have you met up with your OT and does he attend those meetings?You need his help and this is an extra worry you do not need right now.
Sylv xxx

9th April 2015, 07:04
Hi Jan sorry you are feeling so low, I guessed as much with our meeting with the EK branch. Sometimes think the meetings are not frequent enough. Are you back from IOW yet ?
I shall have more time after next week (eoy books) perhaps Bill and I could arrange a meeting he seemed to chat quite well with him for first meeting.
Not that's Bill's much better lol, he has walking sticks and wheelchair now, but hasn't used either. Just balances holding on to the wall or table or chairs.
I know that talking and sharing helps so give it a thought. It is probably with all the running you have both done and Steve still does he cannot accept that this awful disease could effect you so quickly. Look after yourself and keep strong, keep planning it's good to lead your life as long as you can
Peta xx

9th April 2015, 08:37
I like the friend/family idea. Ringing up MNDA Connect can't hurt and their experience could prove invaluable. My wife breaks down easily if we engage in any deep MND discussion, but she has always attended appointments when asked. As if having MND was not enough...I do feel for you Jan. Keep us posted on how you get on with hubby please...there is a solution waiting to be discovered.

9th April 2015, 18:04
Thank you all, today has been better because I had my gorgeous grand daughter to take care of. I did tell hubbie that I was feeling very tired and down and also that I wanted him to read this thread later, we will see if he will.

Night walker
9th April 2015, 18:19

I really hope he does read your thread and if he wants to talk to a carer I have limited experience but would be happy for him to call me for a chat on this. He might just not know what is expected of him. I was scared witless at the start, every new thing I encounter throws me into a bit of a wobble but with the help of other carers on here and indeed lovely kind hearted people who have the disease I am soon put on track with heaps of solid, priceless advice.
I do hope he reads this as there are dozens of us he can reach out to. No one is a stranger here, we are in it together as a virtual team for each other.
Sylv x

9th April 2015, 20:32
I had this from my husband different circumstances ( breast cancer at 26) but I had no idea at the time how he felt, only after time did I realise how he kept from me, speaking to his friends when I was not about.
At 26 I had 3 children under 5.5, but he kept it together, more than I ever knew. xxx

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