Carers Break - Experiences and Thoughts During Pandemic

[Thislifechoseme]

Hello everyone. I’ll try to be brief, partly because I need to try to remain anonymous.
I am the main carer for my wife and due to changes in behaviour It’s becoming very challenging.
In a nutshell I am absolutely desperate for a short break, I can feel myself literally falling apart.
The dilemmas I’m facing are: how to broach the subject with my wife, I’ve ‘mentioned’ and it’s resulted in awful guilt inducing outbursts. I worry that I’ll have everything in place only to be emotionally blackmailed at the last moment.
How to approach the break if I do leave for a time, cut all contact except emergency? Visit? If so how often? Phone or video calls? I think I want a minimum of 1 week or 2. Judging by initial reactions I am fearful that she could turn to hatred, not want me back and that it would be the end of our marriage. That is not what I want, I love the bones of her, but know I am not at my best and just cannot continue the way things are.
Has anyone regretted taking a break? Gotten away only to give in and return after a short time?
In the current crisis i can control comings and goings, decontaminate deliveries etc. If anything happened i really would never forgive myself

I would appreciate any tips or advice

[miranda]

Welcome. I am not a carer but can understand the awful dilemma you are facing and, from the time you,posted, I guess you are having sleep disturbed nights. Does your wife have a support team through a MND clinic? If so perhaps one of them could intervene on your behalf. Or maybe there’s a local hospice which could advise. I do hope you get some guidance and support for yourself because your physical and mental wellbeing are equally as important as your wife’s.

[Ellie]

Hi ThisLife.

Your post is heart breaking really and many, many people will identify with what you’re going through. Caring for someone with this devastating illness is very hard, often thankless and always exhausting - breaks are vital. I go for respite 2x year for my own sanity, never mind my husband’s…

Assuming your wife has all the help she needs whilst you’re away, you must take time out for your own health & wellbeing - you won’t be of any use to your wife if you have a breakdown. Have you anyone you can talk to and who might be there to support you when you explain the situation to your wife? (A friend, family member, MND Nurse, Hospice Nurse, Community Nurse etc.) You will need to be strong if you expect you may be stymied at the last moment but your wife needs to know how her obstinance is impacting on you and you must be fully honest with her.

You may need to consider if her behavioural changes are linked to the MND - unfortunately a substantial minority of people with ALS/MND do have some degree of behavioural and/or cognitive changes, usually picked up by screening during routine appointments (both you and your wife are asked to complete questionnaires)

As to the frequency and type of communication you have with her when you are on your break, that’s hard to know. maybe start with a phone call and see how it goes? When I'm in respite, it's a clean break from my husband but my teenage kids visit.

You can always ring the MND Helpline if you feel like things are too much for you - they are great listeners and know the challenges caring brings.

Big hug to you and I hope you get your much needed break.
Love Ellie.

[Deb]

Hello and a warm welcome to the forum,

I am so very sorry for your very sad post. How you feel is totally understandable and it must feel impossible for you at the moment. I am sure there must be many carers for MND people who feel the same way and in the current situation you must feel so isolated.

I really hope you can talk to someone about how hard it is. Our MND nurse gave phone numbers for help to the whole family when I was diagnosed and I think sometimes it is harder for carers to see someone they love deteriorate, whilst caring for them physically and keeping the house going etc. You need to look after yourself first other wise you wont be able to help your beloved wife but I guess that's easier said than done , especially at present.

Take care of yourself and I am hoping you get a break soon. Keep in touch
Love Debbie x