Struggling

[MamaRics]

I apologise firstly for having a moan but I am really struggling at the moment coping with my husbands MND. He was diagnosed in Sept 16 and until May last year was working. In the last 6 months he has deteriorated but is still able to walk although unsteady to the bathroom. He uses a NIPPY at night and requires me to use a cough assist with suctioning as well. His arms just hang and he requires help with all care, he doesn’t eat but requires PEG feed and extra fluids.
I thought I was managing quite well but I have recently had to return to work and I am trying to balance everything. I feel so guilty as I do get tired and I do snap at him sometimes especially when he just laughs but I know this is part of the disease. How do other careers manage? We did have additional support but hubby didn’t like this and cancelled it. If I sit down for a cup of tea he suddenly wants something and he just laughs. I feel awful for thinking I just want to run away for it all but I know I can’t and I wouldn’t. I love him dearly but coping is very waring. Sorry for moaning I know I am not the only one and I am grateful he is still with us, just struggling at the moment.

[Vix123]

Hi MamaRics
My husband to has ALS. I definitely know how your feeling. I also work and I do feel guilty for leaving him. We are looking at care at the moment. Some days it’s like a black cloud that comes over and it’s true you do feel like running, even though I wouldn’t. I just try to take one day at a time and enjoy what we have now, I know it’s going to get much harder though.
One day at a time xx

[Kayleigh]

Hi MamaRics,

I'm not a carer but I just wanted to say you are a wonderful wife for lovingly caring for your husband, as well as running your home and working.

I'm not surprised its a struggle to cope with everything though - you are constantly kept busy with too much for one person to cope with and it doesn't sound like you get enough time to relax either.

Its a shame your husband cancelled the carers - did he say why he didn't like them? - would he be prepared to give some different carers and try? Are there certain things that he might be happy for carers to help him with, even if it's not all aspects of his care? He might need to get used to carers gradually before he felt comfortable enough for them to help him with some aspects of his personal care.

Even if he is saying absolutely no to help from carers, perhaps he wouldn't object to getting help with the domestic side of things, such as a cleaner to do the housework and ironing etc?

I hope he realises that it is unreasonable for you to be expected to do everything at home yourself as well as work and be his carer. There are only a certain number of hours in the day and you need to have enough time to rest and relax as well. Its not nice for the person with MND but it's not an easy life for their loved ones who care for them either.

Something needs to be done to lighten your workload and so hopefully your husband will agree to getting some help at home in some way. I can see why your husband might not want to be looked after by anyone other than you - but I hope he realises that when he is making decisions about the provision of his care etc, he should be considering your well-being as well as looking at things from your perspective, rather just his own.

Sorry if I sound a bit harsh and I don't intend to be unfairly critical of your husband - but sometimes when someone in a marriage or partnership becomes very poorly, they can often lose sight of the reality that there needs to be compromise on both sides, not just from the carer in the relationship.

I hope things get better for you very soon and your husband is able to agree to some sort of help that will lighten your workload - and hopefully that would give you more quality time together and some vital leisure time for yourself.

Love Kayleigh x

[Terry]

Hi MamaRics;

We are in a vaguely similar situation in that I laugh at the worst times and that winds up my wife even more. Like your hubby, I can't stop it, I wish I could cry but I can only laugh. He could try Citalopram, it is a SSRI antidepressant and can quite quickly help curb the inappropriate laughter.

You will and probably do need help now, so unless there's a very good reason he should accept it.

Love Terry

[Deb]

Hi MamaRics

Firstly please dont say sorry for having a moan. It sounds like you are in an impossible situation and you are very entitled to feel very down

It must feel like there is too much for you to cope with, especially as you are working and being a full time carer. It's not surprising you are struggling but something has to give.

Unfortunately there are no magic answers but you need to take care of yourself and find time to relax otherwise you wont be able to care for your husband. I am hoping you have support from your MND team who can offer you the necessary support and guidance . When I was first diagnosed we spoke to a benefits advisor from the MNDA to work out if my husband could afford to give up work, although I dont know if this would help you.

Take care of yourself,
Love Debbie x

[Lynne K]

Hi MamaRics, what Kayleigh, Debbie and Terry have posted are well worth considering. I'm sorry that you are not getting much or any 'me time' time for a peaceful cupa, or relaxation. Something has to give and I sincerely hope that it's not you. You sound like a brilliant, long suffering and caring wife. You need an outlet for your stress and this forum is a good place to start. No need for an apology . Obviously there's practical matters to work on but would you consider some talking therapy/councelling. It's at least an opportunity to offload face to face to somebody who has a non judgemental attitude. I hope that some things improve very soon. Lynne

[Gillette]

Hi MamaRics,

I'm sorry that you are finding your situation difficult. My partner cares for me and finds it very hard - and I don't have emotional lability. We are lucky because we both took early retirement so he doesn't have to work. I can't imagine how hard it must be, trying to keep all the balls in the air, especially as your husband refuses outside help. Do please take care of yourself as best you can. I wonder if your GP or the MND team might be able to convince your husband that he needs help, not just for himself but also for the sake of your mental and physical health.

I wish I could do more than send virtual hugs. ((((()))))

[Ellie]

Hi Mama Rics,

I am so sorry you're feeling like this.

I can only echo the advice already given but would stress that it's not OK for your husband to demand that you, and you alone, should care for him - it's simply unreasonable and untenable, given the situation.

Big hugs.

Love Ellie.

[Wailywoo]

Hi Mamarics,

I have just spent a little while reading the latest posts as I have been really busy for a couple of weeks and not been able to have a sit down and go through them.

I just wanted to post a quick support message as you are struggling.

My hubby was diagnosed in January of this year although his obvious symptoms started in late 2017. I find myself doing more and more to assist him, but am just grateful that his onset is lower motor neurones and it seems that he can use his arms still (although they are getting weaker) and gets about in the house using a couple frames - one upstairs and one downstairs and a stair lift between the two. I am not sure how much longer he will be able to walk even with a frame....

My experience has told me that I need to make him understand that I can’t do everything and that the odd bit of equipment that we have at the moment that helps him get about is important to help me as well as him. He has been very quick to say no to stuff and I have reached the stage where I can no longer allow him to make these decisions alone and have told him that we are in this together. He may have the disease, but I am the one who is having to physically cope with him, the house, garden, work and family visits (who just seem to be getting it that I could do with them making cups of tea and helping with food when they are here instead of me doing it all!). What I am saying is that horrible as this disease is we are both having to cope with it, albeit in different ways. Hubby is 6’1” and I am 5’5” so the logistics are obvious. I find with his right leg being absolutely useless and his left leg gradually going the same way, we are being more inventive to help him to get about and do the things he likes to do.

All I can say is that you need to find a way - we all have one eventually - to let him know that it is all a joint effort and any decision making should be done jointly.

I get the sitting down with a cuppa only to be asked to do / fetch something...but am quite used to that having two dogs that need to go out periodically and seem to time their requests with me doing nothing! Hubby does have the emotional lability, but it is mostly crying and only a little laughing. Not sure how I would react to the laughing on a constant basis.... All in all it can be very wearing and I really feel for you.

Well enough about me. I just thought I would reply.... I know we are alone in this, but we can be alone together on this forum. Keep checking in and joining in.

Warmest wishes to you and your husband.

Wailywoo