My husband has a lifelong neurological condition. We’re both in our 30s with two children (one teenager and one under 10) as well as a 5 month old puppy. He had very very mild symptoms for about a year (undiagnosed) but since January it has escalated rapidly. His diagnosis came after we got the puppy otherwise as much as we all love her I absolutely would not have got her.
Probably relevant as well is that my father died of a neurological disease when I was a child myself.
I’m finding that I am struggling more and more mentally.
We’ve always been such a team whereas now I just feel so alone. Understandably, he himself is struggling with a lot mentally alongside the actual physical condition. He has been unable to work for a while and can no longer drive. He is on medication to try and manage symptoms while waiting for botox injections (which may or may not work) but the medication isn’t doing much other than making him tired.
My dad fought against his disease until he absolutely couldn’t fight anymore whereas it feels like my husband is giving in to his condition. He won’t leave the house. He did initially walk the dog still but now he won’t do that either.
I feel like aside from the fact I’m doing everything at home while still working full time, trying to figure out what to do financially, I’m also trying to support his emotional state alongside the physical support he is increasingly in need of.
I’m finding it heartbreaking watching my children taking on more and more responsibility. It isn’t the childhood I wanted for them after my own experience. I can’t talk to anyone about how I’m feeling and have spent the last two days just feeling very emotional.
3 Likes
Hi @Fourseatsandasteerin ,
That’s quite a username!!
Welcome to the forum.
It’s sounds so tough for all of you. Such a huge life change and so young.
Are the children’s schools aware of the situation and that the children are classed as young carers? There are some great charities and groups that run fun activities and support for children in their situation- well worth investigating.
What is the name of your husband’s condition? There might be an online or actual association or group that offers support to families and suffers. Learning how others are adapting / coping/ not coping etc can be helpful.
Could your husband have a job working from home? As it’s very hard to be the only breadwinner, running the household, parenting and chief dog walker.
It’s worth contacting Carers UK helpline to check your family are claiming all the benefits you are entitled to, too.
3 Likes
Please get in touch with our Carers UK helpline to help you with these important issues, especially the financial aspects of it all. Is your husband claiming any disability benefits? Exemption from Council Tax may be an option as it’s a neurological condition.
Have you heard of Young Carers? I know they exist where I live, Hampshire. It might help yours to talk to others in the same situation, they do days out and I think holidays too.
Have you had a Carers Assessment from Social Services?
3 Likes
Hi @Fourseatsandasteerin and welcome. I’ve been a carer for far too long, starting when I was small. Young carers weren’t recognised at all at that time and I absolutely recommend that you seek support for them as well as for yourself. You’ve already had good advice from @Melly1 and @bowlingbun so I’ll just add that there is usually local support available: if so, you’ll find information about it on your council’s website in their social care section.
Feel free to vent here - the “Roll Call” is our daily slot for chats, moans, groans and bad jokes! Why not dip in?
Your local council website will have information about carers support in your area
3 Likes
Hi I agree. Great user name!
What an awful time you and your family are having. No wonder you are feeling emotional.
Have you registered as a carers with your GP? This might seem counter intuitive as money sounds tight, but could your GP sign you off for a while so you can take time to focus on a forward plan? In addition, have you family / friends that can help take some pressure of you, again while you concentrate on next steps.
I work at a vets and know how attached we become to our pets and how good they can be for our mental well being. However, at this time, dog walking might either be a great distraction or one thing on your never ending list. If the latter, can I suggest you try and get your puppy a temporary foster home? You could call your vets and they should be able to help, at least with contact numbers.
I wish you all the best. I’d recommend, keep chatting on this forum, it’s great!
3 Likes
@Fourseatsandasteerin, sorry your going through a tough time. It’s sounds like it’s emotional trauma. I’m guessing he is trying cope in his own way. One recommendation is ask friends and/or family to come round to help. Perhaps they can give you support needed until you decide what to do. I too was a child carer many, many years ago (30+yrs ago in fact). In total, I was a carer for a similar amount of time. I happy to offer advice should you need it.
PS, cool user name. Also, other people on the forum can also help.
2 Likes
@Fourseatsandasteerin you are dealing with so much including reminders of your dad’s illness. As usual you have had great advice from the guys here. Adding to Horseydeb I know our vet has a list of volunteer dog walkers usually animal lovers that for some reason can’t have an animal. Best thing with that is you get help but also give help and enjoyment to someone else
3 Likes
@Fourseatsandasteerin hello, nice name. You do have a lot to deal with im sorry you are going through all this .it must be very overwhelming for you. I hope that you are ok. You have some great messages from lots of kind people i hope they make you smile. With good advice for you. I hope some of it will make your life easier for you.sending love.
1 Like
@Fourseatsandasteerin, @Charlesh47 puts it eloquently. Carersuk.org is a good place to start. Also there are organizations out there to help kids who help with caring duties. I started been a carer at 11yrs old. There was no help for me a few decades ago. Check around and see if there is a local organization near you. 
1 Like