I recently wrote a post about how thankful I am for my spouse as a chronic illness sufferer. And while that post was completely truthful, it only shared one side of the story. I’ve found myself thinking lately that I want to share how hard it can be when your spouse is also your caregiver. Even though Mr. Meena is a great husband, there are times when he has said or done hurtful things due to the stress of being my caregiver. I have been hesitant to share on this topic because I don’t want to be overly negative towards my husband on this blog. But we have agreed this is an important enough topic that it’s worth sharing his less lovable qualities. That being said, I took care to be respectful of him while writing this and this is by no means meant to be a husband bashing session.
When Your Spouse Is Also Your Caregiver.
Photo by Cureton Photography.
We need to talk about the downside of when your spouse is also your caregiver (or your significant other, partner, etc.). To anyone who is suffering from autoimmune disease, chronic pain, or chronic illness – I need to tell you that you aren’t alone when things get hard.
You aren’t alone if you’re embarrassed about some of the things your spouse has to do for you.
You aren’t alone if your spouse has ever questioned your pain.
You aren’t alone if you have felt resentment towards your spouse for being able to do more than you.
You aren’t alone if your spouse has ever run out of endurance when it comes to taking care of you.
You aren’t alone; you’re just someone going through something that can be devastating and unfair.
To be clear, I’m not condoning abuse in any form. Rather, I’m acknowledging that being chronically ill is exhausting on you and those around you and it will inevitably bring out the worst in people at some point. You will have ugly fights with your spouse and there will be times when you feel like you are in the lowest valley of your life. You might find yourself thinking, “Why does it have to be so hard?”
Unfortunately, a sick spouse can be very demanding on the caregiver. Your spouse may find themselves giving continuously to you while receiving very little in return. Some people can manage to do this while taking good care of themselves, but others quickly become overwhelmed by trying to take care of themselves, their home, and you, their sick spouse, all at the same time. Furthermore, many of these caregivers didn’t enter into the relationship expecting it to be that way. There are certainly exceptions, but in my case and in most of the stories I have read, people became sick after they were dating / engaged / married and the relationship dynamic suddenly swung into a different dimension. In these cases, your spouse didn’t ask to be your caregiver, it kind of just fell into their lap. If they chose to stay with you (which sadly is not always the case), they still have to learn how to adjust from a typical couple to a spouse-caregiver lifestyle.
“Caregiving often changes the dynamics between partners — from sharing the joys of living and planning a brighter future to merely surviving the numbing drudgery of daily care tasks. Some of the passion and friendship may go out of the relationship; sadness or even mutual resentment can creep in.”
I definitely know what it feels like to just survive. To feel like it will be a miracle if we make it to the weekend. And I’m saying that as someone who has a very caring, loving, and dedicated spouse – but one who is still human and far from perfect.
Another problem that arises when your spouse is also your caregiver stems from the likelihood that the household labor was unbalanced to begin with. Women have historically been responsible for the majority of household chores and women are more likely to be the sick spouse. For example, lupus is about nine times more common in women than in men. In my case, Mr. Meena and I were splitting the chores nearly 50/50 before I got sick. But it still wasn’t easy to shift to more of an 80/20 split (or 100/0 during my flare ups). So not only does your spouse suddenly have the burden of caring for you, but they also find themselves responsible for a larger part of the household labor that they may not be willing or able to perform.You aren’t alone if your spouse has ever run out of endurance when it comes to taking care of you. Click To Tweet
Things can go awry even with the most empathetic and understanding spouse. My husband is forgetful, which means I often need to give him step by step instructions (while I’m not feeling well) in order for him to get specific things done. Our methods of thinking and communicating are vastly different, so when I try to tell him how to do something – especially if he hasn’t done it before – he often will misunderstand and the situation escalates into a fight. The last thing we need when he is exhausted and I’m delirious from pain is to start fighting.
Other times, Mr. Meena tries to do something by himself that was historically “my job”, but it doesn’t go very well. Recently this happened with our cold brew coffee. I no longer have the strength in my fingers to strain it properly so he has tried to take it over. However, when he did it he left coffee grounds in the concentrate and in all the corners of our kitchen. It left me feeling very frustrated and conflicted – because I should be thankful that he helped me (again) but instead I’m just mad because he did it incorrectly. It’s a terrible feeling, and it’s one of the worst things to deal with when your spouse is also your caregiver.
Sometimes I feel like I’ve lost control over my life, especially because I’m a bit Type A and like to have things done a certain way. So how do I handle the frustration when my husband isn’t doing a chore the way that I would if I were able to? It feels unfair to criticize him because he has already been pushed so far beyond what he can handle. He went to work for eight hours, ran an errand for me, called the doctor on my behalf, and put away the laundry – so how can I tell him that he did a terrible job straining the coffee? I end up feeling like I’m an energy sucking black hole that has taken all he has to offer and is still demanding more.
And I want to tell you it’s okay if you feel the same way. Your feelings are valid. Your situation sucks, but your feelings are valid.
I know what it’s like to feel powerless – because I used to be able to strain my own coffee and I never had to worry about needing someone to do it for me.
I know what it feels like to want your spouse to just be your spouse and not your caregiver. It’s hard for Mr. Meena to treat me like his beloved when he is so focused on taking care of me.
I know what it’s like to wonder how we are going to endure just one more week – not to mention months and years and decades. A person can only handle the intense stress of a sick spouse for so long.
I know what it’s like to despair over whether I will ever get better. It’s been almost two years since I got sick, and I continue to get worse.
I know what it’s like to ask myself how we can ever reasonably have children. Because let’s be honest, at this point it’d mean that Mr. Meena would have to stretch himself even thinner and take on even more responsibility.
I have to believe that we weren’t meant to endure this situation forever. I have to believe that I will get at least marginally better – to believe that we will be able to fight our way out of this pit we seem to be stuck in. The alternative is too devastating. But in the meantime, it helps to focus on ways to alleviate the strain on us both.
So, when your spouse is also your caregiver and it is getting to be too much for both of you, what can you do? Here are some things that I’ve learned while wading through this season of life.
10 Tips for Easing the Burden.
1| Find creative ways to do things yourself.
There are so many chores around our home that I can no longer do. But Mr. Meena simply does not have enough time and energy to do all of them. Some chores have easy solutions, such as purchasing a Roomba to replace vacuuming. Other chores may have less obvious solutions. For example, I can no longer twist ice cubes out of their trays because of the joint pain in my fingers. So the ice cube trays would end up sitting in our freezer for weeks because Mr. Meena was always too busy with more essential chores like the dishes or laundry to get to it. Eventually I realized I could place the ice trays upside down over a large bowl and wait for them to fall out. I end up losing part of the ice cubes because they melt a bit in the process, but it’s still worth it because I’ve taken one more thing off of my husbands’ to do list.
Bonus: read my tips for cooking with chronic pain and illness.
2| Redistribute chores.
Maybe your spouse used to handle the budget, but you could start doing that while they take on a more physically demanding chore. Try to find ways that you can contribute within your means.
3| Try writing down very specific instructions.
Remember how I said my husband is forgetful? He probably made my favorite smoothie for me three dozen times before he remembered how to do it without me telling him how. And when I don’t feel well (and especially when I have brain fog) it can be really difficult for me to communicate. It would have been really helpful if I’d taped the recipe into the cupboard, instead. You could do this for regular chores, until your spouse gets the hang of it, or for less regular things that you only need help with every once in a while.
4| Prepare to spend more time alone.
This is one of the hardest things for me to do; in fact, I’m quite horrible at it. But it doesn’t change the fact that Mr. Meena can’t spend as much time with me while also doing the chores that I can no longer do. Furthermore, he needs more time for himself than he used to so that he can unwind from the stress of it all. I try to fill my plate with things to do so that I won’t miss him as much, but there is simply no replacement for him.
Perhaps part of the reason this is so hard for me is that I haven’t really been able to make friends in the area since we moved back to the USA. Supportive friends can really ease the burden on our spouses, and I encourage you to try and find them.
5| Plan for flare ups.
If your illness has stabilized, you probably know how often you’ll get flare-ups and you know when you are about to have one. Try to create a strategy so that life doesn’t completely fall apart during your flares, which puts even more stress on your spouse. Try keeping extra meals in the freezer or setting aside money so that you can order take-out food that week. Things will go much better if you are on the offensive in all areas of your life.
6| Explain the situation to your friends and family.
You tell your doctor about all your various problems and you should tell your friends and family, too. Well, maybe don’t tell them every little thing, but do give them idea of what life is like for you on a daily basis. Unless they are living with you they probably have no idea what you are going through. This is especially important when it comes to the burden on your spousal caregiver, who is often overlooked or underappreciated in their role. Take some time to educate them about your illness and share both you and your spouse’s hardships with them. Perhaps they could help more if they knew more about it.
7| Talk to each other.
Make sure your spouse knows what to prioritize – what must be done right away and what can wait until later. Talk to them about what is reasonable for them to take on and whether or not they need help. Ask them how they are doing and don’t let them become lost in chores – remind them to take breaks. Tell them how much you appreciate them and love them – and then don’t forget that you love them during those inevitable fights. Try to give them positive comments more often than negative ones (and more often than you make requests).
Most importantly, remember to set aside time to talk to them just as your spouse and not your caregiver.
8| Downsize and declutter.
Mr. Meena and I moved to Germany with a fraction of our belongings, and when we returned home we were totally overwhelmed with how much stuff we owned. We realized that we were much happier and had a lot more free time when we had less stuff. We decided to get rid of as much stuff as possible so that we wouldn’t have that additional burden while trying to manage my health issues. This is also one reason why I’m really glad we live in an apartment and not a house, because then Mr. Meena would have to worry about things like mowing the lawn and cleaning the gutters, too.
If you haven’t tried downsizing or decluttering yet, consider the positive effects it could have on your life and how it could make things easier for your spousal caregiver.
9| Seek help.
Seeing a therapist can help immensely when you’re dealing with chronic illness. But don’t just go by yourself – have your spouse join you or encourage them to go on their own. Make sure you are both dealing with your situation in the healthiest way possible.
Ask your neighbors, friends, and family for help. Read the blogs of people have the same illness as you (the Chronic Illness Bloggers Network has a directory you can look through). If you can afford it, hire a cleaning service. Don’t try to do everything on your own.
10| Let things go.
Let go of your anger, forgive your spouse if they’ve wronged you. Let go of your pride, apologize when you need to. Let go of unrealistic standards, let your home be a bit dirty. Let go of your stress, take a break from reality every once in a while.
Feel free to add any tips or feedback you may have in the comment section below.
Featured photo by Josh Willink via Pexels.When Your Spouse Is Also Your Caregiver + Tips for Easing the Burden. #ChronicIllness. Click To Tweet