Marriage suffering

[SarahWP]

Hi all

First off, I’m not writing this for any sympathy- I guess I just want some advice and maybe some reassurance that things will get better. Though I’m not holding out much hope if I’m honest.

For those who don’t know me, I was diagnosed this August and I am now almost completely wheelchair bound, though can just about transfer myself. My speech has gone completely and I have swallowing difficulties and had a peg fitted last week which I’m not yet using though it may not be too long. I have absolutely no energy and by the time I’m dressed (with help) and downstairs I’m shattered.

I’m married to Sue and we’ve always been rock solid. But over the last week or so things have become pretty bad between us. She’s irritable and impatient with me and seems constantly angry. I’m not much better but I try not to get angry and/or cry because I have difficulty breathing which is scary, so I think I’m suppressing it and it’s manifesting itself as depression instead. We seem stuck in a cycle and can’t get our. I’m on anti depressants, as of 2 weeks ago, but there doesn’t seem to be any counselling available. Things are so bad my one reason for keeping on fighting is no longer there and I see very little point. I’m grieving for the life we were living which was simple but very, very happy - and now just a distant memory. My life now is miserable , to be blunt and no amount of people telling me to be positive it helping because sometimes you just can’t be.

With Sue by my side I feel I can face anything but with things as they are I feel completely hopeless. Has anyone been through something similar? Do you have any advice? I’m not one for self pity but I can honestly say I’ve never felt so low or so utterly helpless - & hopeless.

Thanks listening. Sorry for being so miserable.

Sarah xx

[Terry]

Hi Sarah,

No magic advice from me I'm afraid.

Mnd puts a big Big strain on nearly all couples. Most of us go through something similar to a lesser extent, essentially when you can't talk much. Every thing is frustrating for both of you.

Have you contact with a hospice as they can often provide support and counselling. Fortunately my Mnd is quite slow so I have more time to adjust but this also means that that my wife has become a long term carer which has its own problems.

I have learnt not to ask for so much and to let things go or flow over me.

You are also very tired and that could well be improved by the use of a breathing machine during some of the night.

Hope you are feeling a bit better and get some good sleep.

Love Terry

[MNDConnect]

Dear Sarah,

I am so sorry to hear how you and your wife are struggling with your relationship in the face of the enormous strain this disease is putting you under.

Does your wife have anyone she can talk to about how she is feeling? She must feel she is losing you and some people react by becoming very angry. Of course that is not helping you, you need her to cuddle you and tell you how much she loves you. This can be very hard to do when you are feeling very lost yourself.

As Terry has previously mentioned, have you had a referral to your local hospice? They have counsellors there who understand the impact that Motor Neurone Disease can have on a family. They may be able to offer couples counselling to you both.

Facing this condition on your own without the support of the person you love is a daunting prospect, there is no easy answer to this but talking about your feelings together might help. Has she been to see her GP, perhaps a course of anti-depressants or talking therapies would help her with her anxiety and emotions?

You are both grieving for the life you had before and you are both going to need help and support to get you back to supporting one another.

Have you or anyone else spoken to her? Would she call the helpline? It may help for her to talk anonymously to one of the helpline advisers about how she is feeling. She can call us on 0808 802 6262 or email: [email protected] we are here to listen.

Best wishes Sarah
Jacqui
Senior MND Connect Adviser

[Ellie]

Hi Sarah,

I can empathise totally with you and your relationship difficulties - we went through a very rough patch and thankfully came out the other side.

My advice is to talk, talk and talk to Sue - then talk some more, openly and honestly and leave nothing unsaid (to fester) Both of your worlds have been turned upside down and, if you're like us anyway, you're both harbouring feelings of fear, guilt, resentment and anger (to name but a few!) which is toxic in any relationship... You need to clear the air and expect a lot of tears because there's a lot at stake.

As Terry said, see if your hospice has counselling available for you both.

The antidepressants can take a while to kick in too and I agree that you need to have as much energy as possible to cope with each day, so if your breathing needs help during the night, consider using NIV.

Are you sleeping?

I'm half afraid to ask... Did the PEG procedure go ahead?

Big non-pitying hug to you both - Sue is having a hard time too for sure.

Love Ellie.

[Terry]

Hi Sarah;

Hope things are better today. Saying sorry sometimes helps, but not always.

Another stress on relationships can be just being together for a lot more of the time and not having separate work experiences, etc. Many couples that just simply retire have problems adjusting spending so much time together without any extra strain.

Love Terry

[Gillette]

Sarah, I’m sad that you and your wife are having marital problems. I think it’s almost unavoidable when something asked huge as MND is involved. As others have said, your diagnosis affects both and each of you enormously. It is literally life-changing.

I hope that each of you will be able to access counselling to help you.

[Lynne K]

No need to apologise Sarah. We've had difficult days, sometimes weeks but we usually come out the other side. Simple things like me wanting to go with him to the shops he reacts to. He often mentions that he can go quicker without the 'faff' of the wheelchair. So I try not to ask and he seldom offers. So I get stare crazy. I feel it worse on a nice bright day. He doesn't understand that even going to a supermarket is a good change of scene. He's never enjoyed it but does it willingly, sort of.

I can't get out in my powered wheelchair at the moment because the gas people are putting new pipes in and they've had all pavements up for about three weeks so far.

We're going to the Yorkshire Dales for four nights next week. A friend is letting us stay in their home while they go to Edinburgh. They are very kind. That'll do both of us good

I hope that things improve for you very soon. I'm sending you a big hug. This isn't sympathy. It's just to show that you are cared about. Lynne x

[Deb]

Hi Sarah,

I am so sorry that you and Sue are having difficulties and it is totally understandable considering the huge adjustments you have both had to make both physically and mentally. You are grieving for the life you had and I guess the future you had envisaged together. It is still early days for you both and it must be hard to find any positives.

I do get frustrated with having to rely on my husband. When I was first diagnosed I was appalled about the potential lack of dignity but I have got used to him helping me in the shower room etc. He doesn't like to talk about his feelings and I respect that but I do worry that he needs a break sometimes, even if just for a day although he says he wouldn't enjoy it.

Please never apologise on here for being low. I am sure we all have dark days and I really hope things improve for you soon. MND must test all couples but It sounds like you have a really strong relationship.

Sending you hugs,
Love Debbie x

[SarahWP]

Thanks all. Fantastic, supportive advice - as ever. It’s encouraging just to know we can come through this. We’ve always had such a strong, communicative relationship and I know deep down we better than how we’ve been recently. She tends to react to stressful situations with anger - not violently so, perhaps intense irritation is a better word! My way of dealing with it was always just to walk away and leave her to it - which of course is no longer possible! Coupled with guilt on my side, from not being able to do more, it can become very difficult. We’ve always said that at least we now get to be together every day, as we love each other’s company- and that’s it, we should be enjoying this time.

I’ve asked our MND coordinator about counselling in the past and she’s looking into it. We live in a funny area where we fall between 2 healthboards which is causing some complications, but I’ve chased this up today. We’ve been offered reiki which is lovely, but not what we really need! The idea of ringing the helpline is a great one tho - thanks Jacqui , I will pass the message on.

And yes, Ellie - I had my peg fitted last week, yay!! I was told on the morning of the procedure that it wouldn’t be under GA after all, because of the risks, so I was just more sedated than last time but it was not a pleasant experience! But it’s all done so that’s a big posit. And tomorrow both my riser/recliner chair and my motorised wheelchair are being delivered. I’m hoping both these will help with comfort, energy levels and what I’m able to do.

On the whole I’m sleeping well. My main issue has been getting comfortable as I’m a bit of a fidget but unable to move my body in bed. My newly delivered profiling bed has helped on that front though. I don’t think I need oxygen just yet but a respiratory nurse is coming next week to demonstrate some options for when I do.

So, lots of positives! Thank you again so much everyone. You’ve all helped me feel a lot less despairing than 24 hours ago. Have a lively time in Yorkshire, Lynne!

[Lynne K]

Thanks Sarah, I'm sure that we will enjoy the Dales. Good luck with everything x