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Hi, my name is Kathy. I am relatively new to being an unpaid carer and it took me sometime before I even would call myself such and come to terms with this new chapter of our lives. My hubby was diagnosed with primary progressive multiple sclerosis in 2019, aged just 51, and around 6 months later the pandemic hit…

I have started writing a blog all about my journey, with a hope that it not only helps me, but also others who may be able to relate, as carers present or past. Hopefully it will be a help on some level, or at least a comfort other people on a similar journey.

My blog is on my Facebook page which is called ‘My blog’ (username Katunpaidcarer) if you wish to take a look. But extracts are going to shared here too.

17 July 2022

The proposal for M to go part-time is now a reality. He starts the new pattern, maximum four days a week, on Monday. He continues with shifts. The four days must be not be allowed to be four together – they must be broken up with days off. The proposed was two on and one off, or two on and two off followed by two more days, but I am told work is trying to work this out. I guess for myself I just will adapt accordingly.

If the pattern is granted it would make a week a bit more predictable and easy for planning. It is a big deal for him, psychologically, as he has never been officially ‘part-time’ and yes it will mean a drop in wage. But on working finances out we think we will be okay. We have, however, cancelled our holiday because we do not think finances will stretch to it this year.

Now I do feel the push to look at benefits. And M should definitely push for the review he is due.

His mental state was knocked this week by this. Because he always saw himself as the provider it is a humbling thing in some ways. The other thing was, he has had the ‘yes’ for the catheter. No need for a further appointment. He awaits a visit from an district nurse to fit this, no op needed with this type. Suddenly this is a reality for him. It will need changing every 12 weeks. This will make sleep less disturbed for him, which should help with fatigue.

But how do I feel? It is so difficult to say right now. I have a feeling it will hit me once I see it physically – after all, it is a very big change and visually a reminder of what is going on inside.

Right now I am just pondering it. My personal life is very private to me but where the whole MS thing has definitely affected this part of our lives, this could be a stopping point. It is difficult to say right now. I wish I knew someone who has had to face all the many challenges and changes that we have, at our age. This is something I am struggling to find right now, but not giving up.

The carer support groups I have attended so far are mainly attended by people above a certain age, mostly above 70. I am not ageist and some are really lovely but I seek someone closer to my age, who has understood dealing with their own struggles perhaps, such as menopause and coming to terms with what their loved one is facing and the journey to recognising themselves as carer.

I have had many friends along the way say to me that I am his carer, but it took time to really accept it for myself. Maybe because he is my partner? I am not sure. You get to looking at someone you love in a certain way, and we have been together a long time, nearly 32 years. It tests your love for someone. And there are days you question yourself, or at least I do, am I going mad?

Often when I come to this point I realise my self-care is slipping, maybe even non-existent. And that I need to take a look at my life and think what can be done to put the balance right.

I am guessing that there are many like this – so often putting yourself on the back burner because of caring for someone. I am not far in. Some out there are far further into the journey and self-care may need planning. This may involve making sure personal care is put in place and even more physical help and care for a time. Even if it is only for a couple of hours it is essential for you. Do not treat it as an ‘add on’. It is looking out for your health; that includes mental health.

I am looking out for the right carer support group for me as I believe it is important to connect with those who are in similar situations. There is an understanding between carers that some who are just well meaning might not have. Find whatever works for you and stick with it – make it a part of your weekly or monthly routine and planning. If monthly is all you can do, or even once every two. Massage for me tends to be once every two months, mainly because money. Caring for yourself, alongside caring for them, should be the priority, fact.