Many people with Chronic Illness require full time Carers. Often that role is filled by loved ones. Our husbands, wives, life partners, siblings, parents, children, even grandparents.
Watching a loved one suffer is just so confronting. No one wants to see someone writhing in pain, or watch the person they’re caring for lose their ability to do basic tasks.
It hurts our Carers as much as it hurts us.
Our Carer’s Feel Our Pain Deeply
My health has deteriorated significantly over the past year. My husband, my beautiful carer, has been my rock. We both know to expect this progression of my disease and we are pretty good at managing the fallout of worsening symptoms.
Does that knowledge and preparation make it easier? Yes a little but it doesn’t make us totally immune from the emotions and reactions that come with change, pain and the unrelenting symptoms of chronic illness in general.
This reality is so often written all over my husband’s face. He feels shattered. Exhausted. Worried.
He’s hurting too!
My pain is his pain.
He is by my side for every blood test, Specialist and GP appointment, MRI, xray and medical emergency.
He helps me in disability toilets to navigate with my walker or wheelchair, while I juggle dealing with a stoma change or an unexpected issue. He experiences the entire roller coaster ride of my chronic disease.
I’d had a terrible night with a blocked stoma, requiring me to give up on sleep at 2.30am and make a hot cup of tea. I didn’t want to disturb my husband so I tried to move out of the bedroom as quietly as possible, despite my walker constantly bumping into furniture.
I didn’t need to worry, he was so exhausted and snoring with a musical sound that could compete with a symphony orchestra.
An hour later I returned to bed, welcomed by more musical serenades. I still couldn’t sleep so I just rested my eyes and body. I began to drift off when I was jolted awake by my husband, who very loudly and clearly said;
” The pain is coming from your neck. It’s why your arm is so sore”
I asked what he was talking about only to have him respond with more snoring.
When he eventually woke after sunrise, I asked him if he remembered taking to me about my neck pain. He laughed and said he must have been talking in his sleep as he had been dreaming about my pain.
Oh no! Poor guy. It’s bad enough he puts up with the consequences of my pain and disability during the day. Now he’s dreaming about it and talking about it in his sleep.
I felt so bad. It just confirmed for me how much we need to care for our carers at every opportunity.
Later in the day he came in the bedroom, as I was resting, and stood by the bed looking at me. He looked so concerned. I asked him if he was ok? He replied he just hates that my body is so horrible to me. He so often feels helpless.
He’s definitely not. He does more for me than he realises. More than sometimes I realise!
At night he even wakes up to check I’m still alive. He can hear me groaning in my sleep from my pain and he worries my body will just give up.
I had no idea he did that. I can’t tell you how much it means to me. I know it also means his sleep gets disturbed and he is getting more and more tired.
So How Can We Help Our Carers?
Sometimes, despite our own needs, we need to take off our “Chronic Illness Hat” and put on our “Carer’s Hat”.
So what does that mean? How can we do that when our disease is all-consuming?
I’ve found a number of simple ways, over the past seven years, to let my husband know I appreciate him, ⁸by creating opportunities to become his “Carer” at times during each day.
Here’s a few of my tips:
- Stop, Ask, Listen – A pretty basic starting point. At least three times a day I will stop whatever I’m focused on and check on my husband. I’ll ask simple leading questions like, “Are you ok?” or “What are you thinking?”. Asking is one thing but listening, really listening to the answer, is so important. The answer could be a trigger to show you how to care better. Perhaps something in the day’s routine needs changing to accommodate your Carer’s needs. If you don’t ask you’ll never know.
- Treat Your Carer – I’m very limited in what I can physically do but there are some tasks I’m determined to hang on to so I take some pressure off my husband. Things like cleaning up after breakfast. Making him a morning coffee and afternoon cuppa. He still has to carry everything to the lounge room for me but he loves sitting in our kitchen chair watching me make a cuppa for us both. It reminds him of his wife of old and he feels cared for, especially because he knows it’s such a huge effort for me physically. There are other things I do too but it’s important to find things that work for you and your Carer.
- Do I Really Need Help? – This is a really important question. Sometimes I will stop myself as I begin to ask for help. It’s not that I don’t need the help but I’ve learned if I take a moment to think through what I’m doing, I can actually figure out a way to do it for myself. That’s good for me and my husband. I feel accomplished and he gets the gift of time!
- Time Out – Your Carer needs time away from you. Time on their own to pursue a hobby or get some exercise. In our case my husband can’t leave me for more than a couple of hours a day, but it’s so important he does. He doesn’t have to of course, but it’s essential he knows I’m happy for him go out for a break, if he wants to. He has some tasks he enjoys at home like working on projects in the garage or gardening. He can be in the garage or garden as long as he likes as we have an intercom system if I need to reach him. He generally goes for a daily walk while I have my morning rest. He knows I’m safe on the bed or in my armchair and he can relax and enjoy some exercise walking around our lifestyle village and local bushland. He enjoys taking photos to bring back to share with me which I absolutely love. He also goes to our local shops as needed to pick up our mail and any extra bits of food shopping we might need, like bread and milk. He enjoys having a chat with shopkeepers and neighbours. It’s important social interaction for him.
- Don’t Over Dramatise – Chronic Illness can be scary and without realising it we can quickly make things sound and seem much worse than they are. This just adds to your Carer’s concerns. Take a deep breath and try to calmly explain that you have a new or worsening symptom. We have a 4 day rule generally for this scenario. If things don’t improve we’ll seek medical attention after that period. We also have an agreement if I calmly say I need an ambulance, my husband knows to ask a few questions and then ring 000.
- Most Importantly – Say Thank you! – Sounds so simple doesn’t it. Do you do it regularly? A simple “Thank you” can make all the difference. I know when I grab my husband’s hand, say “I love you and thank you”, after he has cared for me in a practical sense, it creates a special moment. The stress drops from his face and we often end up laughing about the scenario we’ve just dealt with. It’s a huge release for both of us.
My tip headings are designed to help you think about what you can do to support your Carer. In what ways can you become their Carer each day?
It will be a different approach for everyone as disabilities come with their own unique challenges.
Don’t presume you know what your Carer needs. A good starting point might be to let your Carer know you would like a “Caring Meeting” with them. Let them know this meeting is to discuss their needs and what you can do to support them in their role as your Carer.
It really is so important to care for our Carers. Their needs are real and they are hurting too.
Phillipians 2 v 3 -4
Rather, in humility value others above yourselves, not looking to your own interests but each of you to the interests of the other
My book “My Medical Musings”, is being published by Imaginewe Publishers. Pre-release sale will be available in May 2022.
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page
I also write @ Blogs by Christian Women
If you would like to read a little more about my journey, here’s the link to My Story