3 June 2014

Is it bravery if you don't have a choice? (Or: Kudos to carers)

In the past few weeks, I've been described by a few different people as 'brave' and 'stoic' and things like that. And that's lovely and everything, but I don't really think it's true. It's not like I've chosen this life. It's not like I'm doing it for charity (sponsored breathing, anyone?!), or like I've stepped in to take on someone else's health issues so that they can live life again - and yes, I know that one's not actually possible, but what I'm getting at is that I didn't choose this. I'm not brave, I'm just someone who is trying to make the best of life in a difficult situation, like countless other people around the world. I don't know anyone who has a perfect life, who doesn't have some issue of some sort that they have to endure. I'm not brave, I'm just human.

You know who is brave, though? My husband. And anyone else who is a carer. They have a choice. They don't *have* to stick around. They could walk away, but they don't. They are true heroes, and they deserve the highest honour their country could bestow.

I have been through various different serious health issues, and I've always believed (and still do) that it is harder to be the person watching than to be the person who is ill. Don't get me wrong, I'm not saying it's easy to be ill or that I'm OK with it; I have been through many times of sheer agonising unrelenting torturous hell that I wouldn't wish on my worst enemy. But. As the person going through that, you have no choice but to go through it, and you just survive from one second to the next. You have one job to do, and that is to Just Keep Going. For the partner or parent of someone who is seriously ill, though, it's a different story. You watch your loved one in agony, and you know there's absolutely nothing you can do to take away their suffering. And for you, life doesn't just stop; you have to keep working, keep paying the bills, keep coordinating care of your loved one, keep putting food on the table, keep doing the housework, keep dealing with your own health and emotional issues, etc etc etc - and all while desperately worrying about and grieving for your loved one, and while probably bearing the brunt of their emotional response to the agony they are in.

I don't have rose-tinted glasses when it comes to my husband Andy. We've been married for twelve years now, and I know full well that he's not perfect! However, he truly IS a hero. He deserves so much more out of life than to be my carer, to be constantly juggling the fractured pieces of our lives and trying to hold everything together. He looks forward to going to work as a break from his duties at home, and he shouldn't have to live that way. He's had to do things for me that no husband should have to do for his wife, and he's had to put up with things that no husband should have to put up with. I've told him to leave, not because I want him to go but because I want him to find a better life for himself; he refuses. I have given him the choice, and he chooses to stay. *That's* bravery.

My Mum is my carer too, even though she lives 100 miles away. She may not be involved in a hands-on day to day way, but there is rarely a day that goes by when we don't talk. Among other things, she helps coordinate the care of me and my daughter, especially on crisis days; she makes phone calls for me; she has often had to talk me through how to do basic tasks or help me make simple decisions; and she and my Dad must have covered thousands of miles in travelling to collect my daughter to give my husband and I regular respite breaks. And she has chosen to do all this. Yes, she's my Mum, and she can't just choose to stop being my Mum, but that doesn't mean she should have to be providing such an in-depth level of support to her grown-up daughter. And, indeed, many parents don't; I know I am incredibly fortunate to have such a supportive family. (And my Mum isn't the only one; the rest of my family have been amazing, too.)

And then there's friends. It's true that I've lost friends since my illness, including people that I counted as my closest friends, however some very special ones have stayed and have chosen to support me. They may not be my carers in an official sense, but these precious people have believed me, have done their best to understand my illness, and have given practical and emotional support. They've also allowed me to continue being a friend to them, to give them emotional support even if it's just by text message; they've made me feel like a human again, not just an ill person. I also have friends who take my daughter to and from pre-school; help me with her on non-pre-school days; provide meals; and support us in various other ways.

Just today I was reminded of how amazing my husband and a particular friend are. I can't cope on my own with my 3 year old daughter E for long, and she doesn't currently go to pre-school on a Tuesday so even though I have help it's always a very difficult and exhausting day. This evening, my husband Andy told me that he'd found out last week that he needs to work late on Monday and Tuesday evening next week; before I could freak out he said something along the lines of, "It's OK, I've sorted it out with Laura". He hadn't wanted to worry me, and anyway I was in a bad way over the weekend so wouldn't have been able to take in what he was saying even if he'd told me, so he contacted my beautiful friend Laura and they've come up with a plan. Laura has a gorgeous one year old boy, and she works four days a week; she has her hands pretty full! Her one mid-week day off is Tuesday. Next week, she's going to try to leave work a bit early on the Monday so that she can collect E from me as soon as she can after E wakes up from her afternoon sleep. She's then going to take E back home with her, have her to stay over night, look after E all day on her precious day off with her son, and have her fed and bathed ready for Andy to collect on his way home from work on Tuesday evening. How amazing is that?! And that's just one example.

I could go on and on about how blessed I am and how amazing my friends and family are, but the point I want to make is that carers are incredible, wonderful, brave people who deserve our gratitude and respect, but who are all too often disregarded as the needs of the 'ill one' take precedence. They frequently bear an unimaginably heavy weight of responsibility and emotion; it's a thankless task, and they do it by choice. To all my family and friends, and especially to my long-suffering husband, THANK YOU. Those words seem so inadequate, but they are all I have. Thank you. Each and every one of you is a hero and you deserve a medal.

And to anyone out there who is a carer, or involved in some way with supporting an ill friend or family member, please never underestimate the value of the job you're doing. You cannot begin to imagine how much it means to an ill person when you just believe and try to understand what they are going through. By choosing to stick around and support them, you are giving them a priceless gift. Thank you.


I'd love to hear what you think! Do leave a comment if you have anything you'd like to say about this topic. If you have any difficulty with this process, please see the Site Help page. Please bear with me if it takes a while for me to respond; I really appreciate you taking the time to read and comment on my blog, but I'm not always well enough to reply. Thank you :-)


Brooke said...

What a great post! And so true. Thank you for giving some well deserved recognition to the hard working carers out there!

Rachel said...

Thank you for your comment :-) I just wish there was a way of properly giving them the recognition they deserve! xx

Tink said...

My husband is my caregiver. I have severe ME. Like you I told him to leave and make a life for himself. He flat out refused and takes his wedding vows very serious. He asked me if it was the other way around, would I leave? No of course not! Still it is not how we envisioned our life together.

He is so lucky that he can work from him or go to the office if he wants to get away for a while. His job caused him some stress lately, he moved into a new position that did not feel good. On top of that he started to feel lousy. My doctor ran the most important me/CFS lab test and it showed I infected him with some of my viral infections. Dr deMeirleir did some research about this subject and his conclusion was that yes it is transmit table between family members.
We alway knew that was a risk.

Than a few weeks ago he started to have chest pains, not good! I was worried sick. I already fell guilty over the transmission. All cardiac test showed his heart and arteries are perfectly fine but he was diagnosed with a burnout. He saw a therapist to get some insight on how better handle these life work situations. One thing she suggested was taking up his sabbatical of 8 weeks and another thing is finding a support group for caregivers.
We are immigrants, here since 2006 and because me being housebound we do not have a large social group that we hang out with or who are friends.

He is going to join some sports groups and do some volunteer work for humanitas to get to know some people but he would really like an online group for caregivers where he could find support and recognition.

Does anyone knows of such group?

Anonymous said...

This is a lovely post! Thank you so much!

Tink, during the years I was caring for my daughter, I didn't find a carer support group, but "talking" with patients online was really, really, really helpful to me. So many people took time to encourage me, answer questions and teach me about the disease, give me the patients' perspective, keep me company, and otherwise just "be there" for me - I couldn't have gotten through it without them. And, of course, it was so wonderful that I didn't have to explain anything, didn't have to deal with misconceptions or "helpful" "have you tried..." suggestions and so on. Perhaps your dear hubby might similarly benefit?


Anonymous said...

There is a Facebook support group:
Spouses, Family and Friends of Lyme Patients.
Perhaps there is a support group related to ME caregivers.

I wish I had found a local group - not just a support group on Facebook, but perhaps your husband can where you live. Probably a support group is valuable in person as long as it is related to care-giving for chronic diseases. It probably doesn't matter too much what the illness is.

Rachel said...

Thank you all for your comments and I'm REALLY sorry about the length of time it's taken me to reply. I haven't been functioning too well lately!

Tink: I'm sorry about the effect things are having on your husband. Please don't feel guilty over the virus transmission or over the impact of your situation on his health. None of this is your fault or your choice. If your roles were reversed, how would you feel about him feeling guilty about the impact of you being his carer? Be kind to yourself! Be as kind to yourself as you would be to him if he was the one with severe ME and you were his carer.

I'm so glad your husband got such good advice from his therapist. It sounds like he has a good plan in place.

A few weeks ago I came across this closed Facebook group for partners, parents and carers of people with ME, and I've been saving the details until I could manage to post it here for you: https://www.facebook.com/groups/154794557914131 - I don't know what the group is like as I am not a member, but it may be of interest to your husband. Also most online support groups for people with ME are also open to carers, so one or both of you may find help, comfort and support there. I am a member of several such groups and they have really helped me.

A word of warning about any support groups, especially online ones: it's easy to fall into a trap of feeling too safe. Not everyone in these groups is who they claim to be, and there are sadly people who deliberately set out to exploit the vulnerabilities of people in those groups, including carers. Don't let that put you off joining! Like I said, I have found these groups extremely helpful, however just be a bit cautious and don't share too much personal info such as contact details etc.

I really hope things start to improve for you both in some way soon. Best wishes :-)

Val and Anon: thank you both for commenting and especially for offering suggestions to Tink; I can't express how much it blessed me to see your comments, especially as I was unable to reply myself for so long. I'm so glad, Val, that you found online patient support groups so helpful to you as a carer. Best wishes to you both :-)