New member

Hi im Matthew 46 full time carer for my wife who has myotonic dystrophy and in wheelchair full time,im from hull East yorkshire,it would be nice to meet other carers in my area he can be lonely being a carer on your own.

Hi Matthew, welcome to the forum.

When did you last have a Carers Assessment from Social Services?
They should be able to put you in touch with a local carers group.

Being a long term carer is tough. I’ve been one for 43 years, since my son was brain damaged at birth. My life changed forever.

Hi Matthew,

welcome to the forum.

Yes it can be lonely.

You might find this link useful Support where you live | Carers UK


Thanks for reaching out, Matthew. I’m in a very similar position to yourself, similar age etc. It can often feel on here that this is a club for carers of geriatrics with dementia as there seems to be so few others on here whose situation is different. Before anybody has a go, I did not mean that in a bad way. Please do PM me by all means.


That’s quiet a statement and a concern for the forum image and it’s lack of reach for other carers and may be something that needs addressing in terms of outreach and promoting Carers UK.
Or maybe many in other care situations are not posting because they dare not because of how they feel about it or because it is too upsetting.

I haven’t particularly taken note of the general genre of care given here, I came here to find out if there are things I’m unaware of that I should know about and to normalise general carer issues.

Caring is not a one-sizs-fits-all but a carer has a lot of common elements no matter who or what condition or age you are caring for. There are many common issues, demands, frustrations, concerns and factors.

My mother is of geriatric age - physically/medically she is geriatric, neurologically her mind is sound and sharper than many less than half her age, she is young at heart and nowhere near her age in such ways. She has probably the mindset of a 50 year old trapped in an ancient body.

Her frustrations of dependency are no different to anyone else’s frustrations of dependency for cooking, washing, going out, admin, banking etc. The emotions and psychology of facing death and going blind still count no matter what age a person is.

The same for the emotions of a carer, it was emotionally awful going through the role reversal, it’s terrible seeing her slow deterioration and pushing her round in a wheelchair - I have to replace that emotion with pride that I am getting her out and about. So it’s a given that we should outlive our parents but have a heart, this is my mum I am watching fade away.

I am doing this alone, after the sudden death of my twin with an extreme anger about her life cut short.

It is hard and lonely and devastating without her, I combat it with turning all the negatives into positives to keep me grounded and my head afloat, appreciate the little things, have little things to look forward to - I’ll bake bread tomorrow, or we will have x tomorrow, wash your hair tomorrow, simple things - there’s no point crying for the moon.

Living in the moment, live for today and let tomorrow take care of itself.

My mum is in palliative care now, no crystal ball or end date, just a long slow deterioration that could be up to several years, unless she has a fatal stroke or heart attack or passes in her sleep before that.
There are frustrations with the NHS at times - hospitals, GP surgery, as for any other carers.

Life is ad hoc, she is prone to infections and no plans can be made because you can guarantee that she will be ill and I can’t get to the appointment/meet a friend etc.