Caring for partner?

Does anyone else here care for their partner/spouse?

I feel like it comes with its own set of challenges.

We’re 32 - prime of life. She has a progressive incurable illness that will drastically shorten her life (along with other chronic conditions).

When she’s gone, my life will be over probably before I’m 40 and I’ll be left with nothing. No kids, no career. I’ll be alone. I’m alone now. I love her so much and have done since we were kids. But this is a lonely, lonely life and I have to come to the terms with the fact that we won’t have a future or a life together.

Hello Sara

Welcome to our forum, you’ve certainly come to the right place to connect with other carers who will understand what you are going through. I’m not sure if you are aware but we are currently running a series of online weekly meet ups for carers to get together and chat informally. People say they’ve found it really helpful and supportive and it’s nice to be able to take a little bit of time for yourself. There’s no pressure to share any more than you’re comfortable with. Join up details are here:
https://www.carersuk.org/help-and-advice/get-support/online-meetups

We are also now running a weekly Share and Learn sessions, where we run a series of fun and relaxed online sessions where visiting speakers who share tips and skills on a range of topics - please have a look at the link and see if one grabs your attention.
https://www.carersuk.org/help-and-advice/get-support/share-and-learn-online-sessions

Do join if you’d like to, we’ve had a lot of new carers join the sessions recently and it’s a great way to meet other carers.
There is also Carers UK’s helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)
with all good wishes
Ingrid

Hi Sara,

I just wanted to say hello and that I had read your post. I’m so sorry that you’re going through this.

Although I don’t care for someone with the same set of health problems, I do care for my spouse who has severe mental illness and have done so for 10+ years, so I connect with you on that level. We also don’t have kids and don’t plan to, I also spend a lot of time feeling lonely.

I think when it’s a spouse it comes with it’s own set of challenges compared to a family member or friend. I have often felt that the caring aspect of my life gets in the way of being able to have a fully fledged relationship or to be able to carve out a career for myself. But having said that, caring for someone you love when they are unable to is one of the purest expressions of love possible.

Remember to value yourself though and remember in the future you’re still a walking, talking, functional person. I can’t imagine what it would feel like to lose my spouse, but I can promise your life won’t end there. Do take comfort in the fact it’s not uncommon for people to completely change their careers in their 50’s, let alone before they are 40.

Keep learning new things and following passions you have, don’t let those go to waste. It’s important to take time for yourself and get respite from caring. I know from experience thats easier said than done, I am still working on the guilt that it brings up, but it nevertheless it is a fact.

All the best, I hope you can make it through.

Hi Sara

I care for my wife, who had a spinal cord injury 7½ years ago. We’re a lot more restricted on the things we can do together now but we decided to make the most of what we can do. And when she’s having a particularly bad day (today will be one of those after our trip to the dentist yesterday), then we hug more, or sit quietly and read together. It works for us.

It’s harder for you - we’re 30 years older, roughly - so we’ve had the future together that you’re dreading losing. All I can tell you is no matter how long you have together, it will never be enough. So make the absolute best you can of whatever time you have together.

I’ve been a carer for years - my son was born with autism nearly 37 years ago, and my career took a nosedive, because my son came first. Over time, I got involved in stuff related to autism and caring, and ended up with a major career change in my 40s, working with carers! You never know what lies ahead - life is unpredictable!