Feeling Guilty

[Jac123]

Hi, this is my first own posting and I have thought for a few days whether to do so as I don't want to offend anyone. My husband has MND provisional diagnosis Jan 2020 formal April 2020 but symptoms from Feb 2018 albeit very mild. Covid hit at the worst time as following his provisional diagnosis we decided we'd travel lots and didn't get the chance which I know he regrets. He is now housebound and immobile, PEG fed, NIV at night, needs all care given. We have carers twice a day otherwise I am his carer. I gave up my part time work earlier this year after his condition got much worse.
I am currently finding myself questioning life and feeling bad for doing so. My day is spent either caring for him or being around to do so, housework and then just sitting and watching tv or reading and responding when he needs something. I rarely go out for myself and feel guilty when I do go for a couple of hours because he can't. I also worry about him when I'm out so I'm distracted and already thinking about getting home. Some friends have fallen away but also my husband doesn't like round much now so I feel more alone. We used to have long chats about all sorts but it's difficult now that he can't speak much and whilst the technology is great we only have short conversations using it and normally asking for something etc rather than chatting.
I love him so much and hate how things are for him, but the effects it has on family members is also horrible.
I just don't know how to deal with these feelings right now. I feel life will never be 'normal' again or when it is it will be because this awful disease has taken him from me.

[PeterPan]

Thanks for posting, I don’t think anyone here is going to feel offended. One of the worst things about MND is its impact on other people. I’m sure other people who are in a caring role will respond, but I’m wondering if you have ever considered counselling for yourself? Our hospice provides that service. You should not be feeling guilty.

[JamesW]

Hi Jac and thank you for sharing,

MND is a tough thing to deal with for both the sufferer and their loved ones. Everybody here is in the same boat and we will do our very best to support you during your journey, we are all friends here ❤️

James x

[Ellie]

First off, nobody could be offended by your post Jac123

I’m glad you posted because, believe me, you're not alone in feeling that your life has been robbed, because that is what has happened: MND has stolen so much from both your husband and you.

I too am totally dependent on others to do most everything for me *but* I have carers coming throughout the day allowing my husband to work. He is my sole carer from the evening to the next morning and, tbh, he can struggle big time with how that ‘duty’ constrains his life, and, unlike you, he gets out to work and has some semblance of normal life during the day, so I really get where you're coming from…

Does your husband have CHC funded carers, council funded or privately funded hours and how many hours per day has he? (And could he get more/be reassessed?)

Do you ever have ‘Me Time’ to meet friends etc? (Do you get out when his carers are in the house?)

Is he in touch with the local hospice?

Sending you a ginormous hug.

Love Ellie xx

[Jac123]

Hi thank you for your kind responses.
Ellie, he is now CHC funded and extra has been funded for another visit but owing to shortage of carers neither of the two agencies we use are able to provide more and CHC and my husband do not want to go to a 3rd agency. I don't get much break when the carers are in as he still wants me to give some care eg toileting. I also shower him 3 of the days a week but they dry him etc and put him back to bed. I try to get out maybe once a week depending on what friends are doing.

Peter, I had therapy last year for anxiety following a period of husbands ill-health and that worked well, but just the last week or so my mood has dropped so maybe time for some counselling, I know our local hospice have offered it before but i felt i was coping ok, thank you for the reminder that they do it. My husband had sessions with a psychologist quite early on and that was really helpful for him and he has great support from his MND nurse specialist and OT.

My husband asked me to sort through all his clothing and get rid of things so I think this has triggered an emotional response as have felt low since.

[Ellie]

I don't get much break when the carers are in as he still wants me to give some care eg toileting. I also shower him 3 of the days a week but they dry him etc and put him back to bed.

Honestly Jac, that's a bit much - he should recognise that you need a break, it's not all about him... (Sorry for being so blunt) xx

[Deb]

Hi Jac123. A warm welcome to the forum and thank you for sharing your thoughts.

Please dont feel you could offend anyone or feel guilty. I have total admiration for anyone caring for someone with MND. Not only have you been robbed of your hopes and dreams for the future but you have to watch the person you love struggle with every day tasks.

It's a thankless and relentless job. Our family and friends try to put in place care for me and arrange a short break for my husband but he says it just makes him anxious. He even feels guilty on the rare occasions he's snapped at me, which is mad considering all he does. Carers are superheroes and should feel proud !

Sending hugs to you,
Love Debbie x

[denise]

Hi Jac

You really don't need to feel uncomfortable. Our lives have been ruined by this terrible disease. What we hoped for in the future has gone.

You do need me time. Even if it's a trip to the garden centre, library, go for a walk, sit in the car and read a book. Just sometime for your head to focus on something else.

We dont do a lot of chatting as Stephen has ftd as well but we do sing. It's odd as his spoken voice is so quiet but he can really sing. We use Amazon music with lyrics and as yet the neighbour's haven't complained.

I know we feel as though we have to do everything for them but sometimes you have to step back and think of you. If you don't you will make yourself ill and that wont help either of you.

Love and hugs, sometimes I really think if someone would just give me a hug.

😘

[Jac123]

I find it hard to say no to him for anything. We have priorities such as needing a drink or a wee over things that can wait if I'm busy, but otherwise I am there in case he needs me. I tried keeping going with work but felt I was being pulled in too many directions and was needed at home more.

[TinyLady]

Jac123 - so sorry to hear how difficult your life has become. You certainly have no reason to feel guilty, but I understand those feelings are not always logical. Your husband must be on your mind so much that trying to dwitch off must be impossible.

My husband suggested stopping work to care for me. I refused. We are still very young and I want him to have his career still. But I also want him to have his own life. I encourage him to go out running with a friend and he has to do all the running around after our teenagers. I have had to accept carers and I am learning to endure being showered and dressed. I hope I can continue to encourage my husband and daughters to keep up with at least some of their own life. If they are healthy and happy then that is better for me.

Maybe try to set some boundaries, so you get some time to relax when you know he is safe and cared for. You are going through so much, you also need to be looked after xx

[shelly21]

Jac123 please please ask for help. This journey is yours also. So maybe write a list of what you would like to do. Before you start crossing things off by saying 'I can't' maybe start with one of the list items. But also can you contact your gp and talk. Maybe anti depressants could help and talking therapy etc. Do you use your local hospice? Have you considered respite through the hospice.

I'm just throwing anything that could help you make this awful journey a tad better.

could you maybe have a mobile beautician come to you for a manicure or pedicure etc. A treat just for you.

you are a the most important person in the care of your partner and that means taking very good care of you.

💖

[Piglet]

Jac123 I could have wrote your post myself. Similar in many ways. My husband has MND since October 2017. We don’t have carers. I am his sole carer as at present I can manage by myself. I do have days when it gets me down. He is with me all the time as he is mobile albeit frail. He needs care in all activities of daily living. Showering, toileting, getting in and out of bed, feeding etc as his hands and arms are of little use. I can get out for a short walk for half hour as he is unable to get out of his chair, so I know he’s safe. We have good family support and they often come here or we go to them. So there is some light in my week.
Our local hospice are not offering anything at present just a monthly phone call.
It’s normal to become irritated and angry at times ant having a moan can help release the anxiety and mood.
The good thing is my husband is a lovely bloke and has never moaned about his condition so that helps enormously.
sending you love and best wishes. Hope you have some good days and do not allow yourself to feel guilty. It’s hard going!! Xx

[MMG]

Hi

I know exactly where you are coming from. I was fortunate that I had a year off sick from work myself following my husbands diagnosis. To be honest I would have been useless at work, my head was all over the place and there was so much to organise.

I felt guilty initially that i was taking the p**s at work (or perceived to be).

I did take up the offer of counselling from the hospice which still continues and has helped a lot. The upshot is that I ended up looking at myself and realising that with the best will in the world I am not superwoman! I could not make this situation better.

We have been lucky enough to go down the direct payments route, which has continued as PHB (personal health budget) which means I employ two personal assistants covering 35 hrs a week, with 7 hours available for weekends which we haven't yet managed to fill.

I still do all of the "intimate" care, showers, toilet etc, but have help with hoisting and for someone to be with him now that I have returned to work (albeit working from home) on a part time basis. Housework is covered which frees up my time and is a great help.

I also have respite hours available as part of the CHC package. So we have increased the afternoon PA by one hour to provide me with much needed time to walk the dogs.

I haven't been out shopping for months and only visit my mum while he is at the hospice one afternoon per week. I could use the respite hours to go out, but don't feel I can. I find myself thinking that I can worry about myself later when I will have all the time in the world and want to spend as much time with him now whilst I still can.

I miss our conversations, the technology, as good as it is, doesn't lend itself to real conversations - this is what we miss most. I don't think we realised how much we did talk before.

Sometimes I get frustrated that I can't just sit and watch TV, or go to sleep without scratching an itch, adjusting a pillow, helping him have a wee, etc etc etc and then I have to stop and think how awful it is for him to have to ask for help with basic functions. He doesn't complain and his "demands" are certainly not unreasonable, but I do feel guilty about feeling frustrated. But according to the counsellor perfectly normal.

I don't want to look back and regret not being there for him. He was adamant that I should return to work to ensure my future, and something to focus on after he is gone. This isn't a path we have been on before, so its difficult to know if we have made the right choices, only time will tell.

[Heather R]

@Feeling Guilty I got my diagnosis just after your husband did, and agree covid has made everything so much more difficult. And we have to still be very cautious because of our vulnerability, whereas I find most of my friends have gone back to normal socialising (and getting covid though mostly not too badly), and some previous meet ups with groups of people through zoom have gone back to in person meet ups, which are difficult or impossible for me. So I don't know if you as a carer have found this lifting of restrictions and people going back to busy lives, emphasises your isolation too. As a person living on my own, I have so much respect for what you carers are doing, but please don't let us make impossible demands on you, everyone needs a break. I have read how mnd may affect our thinking in various ways and to different degrees, including affecting our ability to feel empathy. But I really wanted to pick up your comment about not having any real conversations any more, because I have been thinking about this lately. People find it difficult to talk about their feelings to different degrees and about different subjects, but also the practical implications of losing our ability to speak. As my speech gets more indecipherable, I sometimes feel it's a new chapter, I will never be able to have conversations as before. Up until recently, if I tried to join in verbally in a group of people, someone would be able to get the gist of what I am saying and translate, and now mostly they can't, so I feel more like giving up. People will wait for me to write with one or two fumbly fingers and predictive text, but I will feel pressurised and make mistakes or not be able to think clearly. And if they don't wait, the conversation will have moved on and your comment will no longer be relevant. I am feeling this now! By the time I write this, ten people will have written something after which I probably wouldn't have written this exactly! Better communicating with one person, but probably much better for those that can type easily.
Anyway, do please give yourself a much needed break yourself, counselling, whatever would nourish you
(I began this ages ago, but friend came to door, so who knows where the conversation is now!)