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Carers UK Forum • Caring for someone with a rare condition
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Caring for someone with a rare condition

Posted: Tue Nov 30, 2021 10:59 pm
by Winter
Hello, super new here but have lurked for a little while. I am 39 and have been caring for my partner for the last year. He has been diagnosed with three rare conditions vasculitis (EGPA), sarcoidosis and ITP. Alongside this he has heart failure and interstitial lung disease all damage caused by the conditions above.

He started to become ill in January of this year and has spent the majority of the year in hospital. Due to the rarity of his conditions he was moved from Wales to a hospital in London, had sepsis 3 times and almost died twice.

I am very new to the caring role but we also have two small children under the age of 6 so I am in effect caring for three people! I am really struggling to manage the complex emotions of caring. I am intensly angry at him and the system. I am sad for what we have lost and what we will never have. I am so sad for my children 😢.

The ambulance has just taken him back in with another suspected bout of sepsis and I am part relieved , guilty and sad. His life has been ruined and he has never complained, not once. What right to I have to be angry at him and sad for myself? I just spotted his pack of seeds he was hoping to plant as a new hobby and I am crushed.

I would really welcome any advice on caring and any connection with anyone in a caring role for vasculitis or sarcoidosis. Xxx

Re: Caring for someone with a rare condition

Posted: Wed Dec 01, 2021 5:01 pm
by Melly1
Hi Winter,
welcome to the forum, though sorry its for such a sad reason.

Firstly does your partner receive any care from outside carers and if so is it enough? There is info here https://www.carersuk.org/help-and-advic ... assessment

Have you had a carer's assessment to see what support you can get? https://www.carersuk.org/help-and-advic ... assessment

Are the school aware of the situation, so they can support the children? Many areas have clubs and support for 'Young carers" which is what your children are. In some areas they have this for young children, in others there is a lower age limit. Worth finding out though. These clubs and schemes - give children a chance to talk about their feelings etc and to have fun.

As you are new to caring, Carers Uk has this guide https://www.carersuk.org/upfront/

Finally, Carers Uk does online meet ups which you might enjoy https://www.carersuk.org/help-and-advic ... ne-meetups

Melly1

Re: Caring for someone with a rare condition

Posted: Wed Dec 01, 2021 8:23 pm
by bowlingbun
Hello Winter, welcome to the forum.
You have EVERY right to be upset at the way your life has changed forever.
We were a "golden couple", we married young, worked in Australia, shipped steam engines back to the UK, and by working hard and saving could afford to buy a cottage with half an acre mortgage free when I was 24, husband was 28. Our eldest son was born the following year, a beautiful happy baby with curly auburn hair, who exceeded all his milestones, slept through the night by the time he was 6 weeks old. Our second baby arrived 2 years later. We had a dreadful midwife who didn't realise the cord was round his neck, it took ages to revive him, he was brain damaged. Although fit and well, he has severe learning difficulties, can't read, write, or do any maths at the age of 42.
Our entire family was given a life sentence, but we were determined to do the very best we could. In time, after a period of depression, we learned to live our "new" life. It hasn't been all bad, I studied for a degree, ran a business, a national club, started a charity for children with special needs, and lots more.#
Be kind to yourself. On days it's all getting too much, accept that just making sure everyone has been fed has to be enough.
Start making lists of what is annoying you most, put it in order, and share it with us.
Sadly, we have no magic wands, but by sharing our situations, you might find some light at the end of the tunnel, leading to a new life, albeit very different to the one you both had planned.