Do you feel more like a caregiver than a spouse?

You’re not alone. 

So many caregivers find themselves feeling more like caregivers and less like a spouse or a partner for the person they care for. I know how it feels. You can hear about it in Episode 21 of the podcast.

It usually creeps up on you. One day you feel the love you have for your partner in life and then they get sick and you start to take care of them. You find yourself preoccupied with trying to hold on to what is left of the life you had together and in the meantime, you are trying to figure out how to keep them alive and get them the treatment they need.

Feeling sexy just doesn’t fit into that scenario and connecting as a couple is hard to do when you are confronted with something that is life-altering.

You continue doing everything you feel you need to as you try to figure out how to navigate through this new life as a caregiver. You try to help your spouse with anything and in any way you can. You find yourself exhausted and scare all the time. Your spouse on the other hand can be worried about how their health affects them. They are scared and confronted with how frail life can be. They feel guilty for bringing this on you. They feel like you don’t deserve going through this and possibly are worried if you will stick around. 

So, as you try to figure caregiving out you begin to fall into a routine and a way of thinking of the things you have to do in order to care for your spouse. At some point you begin to realize that caring for your spouse and being a spouse are two different things. Your focus as a caregiver is the care your spouse needs. Being a spouse is the connection the two of you have as people who vowed to love each other through everything (what a way to test that, right?) 

At some point you realize that ….

You miss them!

It feels like they don’t look at you with love, they don’t touch you the way they used to, you miss the long conversation you used to have, or simply miss looking at each other with so much love it made time stop.

Guilt, anger and resentment

When you become aware of this hole in your life you possibly feel guilty for thinking of it because they are going through so much right now. Maybe you feel angry or resentful that you are doing so much for them and they don’t even pay attention to you. Or it makes you feel extremely alone, the kind that makes your heart hurt.

Understanding that you miss the connection is such a great first step! Knowing that you miss them can be enough to get you to start thinking about how you can connect with them again. This doesn’t have to happen as a big project. In fact, it shouldn’t. You don’t have the energy for that and it’ll create extra stress. Just as you slowly drifted apart you can slowly move back towards each other. 

To do this you need to:

• Be mindful and aware of how you feel
• Not play dirty or bring judgment into the mix 
• Know what it is you’d like to have happened.

Consider…

Talking with them about it. They could be feeling the same thing and not sure how to bring it up. Let them know that you miss the way you used to connect. Acknowledge that you’ve been in full-on caregiver mode and may not have been receptive to switching over to being a partner instead of a caregiver. Or maybe just a nice long hug and simply tell them that you’ve missed them. 

Actively make changes. Maybe talking about it isn’t the best thing to do or you feel awkward about it. That’s fine. Either way the next step is to make some changes.

Stop being a caregiver all the time. I know it’s hard but you have to learn how to do it.

• If you find you’d like to look up new cancer centers while you eat lunch but your wife is in bed then screw the research and go up and sit with her while you eat.
• Maybe put together a little picnic lunch you can have together in the room.
• When’s the last time you held hands? Do that. You don’t have to be going anywhere. You can hold hands while watching tv.
• You can give their shoulders a caress or a squeeze when you are pushing them in a wheelchair. Touch is so powerful!
• Hugging is another form of touch that is powerful for both people. Make the hug longer than you’re used to. Hug until you feel it in your heart. You’ll know if when you get there.
• Write a letter. There’s no special formula. It doesn’t have to be a love letter. It can be a list of the top jokes you used to love to hear from him. It can be the ways she brightens up your day or just a doodle.
• Stay with them when they are emotional and don’t feel like you have to fix anything. We are always on high alert on how to make things better for them that whenever we see them in distress we want to fix it. You don’t always have to fix it.
• Sometimes it feels good to not cry alone. It feels good to be vulnerable enough to cry and not have to feel bad about it or have someone try to fix it. Having someone who can sit with you as you cry can sometimes be the most impactful way to feel supported.
• Find a way to laugh together. Studies show that laughing with someone else creates a connection. It doesn’t matter if it’s a comedian on youtube, a funny movie, viral videos of people falling, or sharing stories of comical things that happened to you both in the past it’s the perfect way to lighten the mood and connect.

Don’t let moments pass you by. The more aware we are of the things that are happening at the moment the more we are able to enjoy them. A simple glance, or smile. Enjoying a quiet moment with them when you would have been trying to figure out what to make for dinner. Whatever it is stop and be there for it. 

Consider talking to them about how you feel but be aware of when it might not be a good time for that conversation. 

Overall not a good time to evaluate relationships and try to make improvements? I hear you. In fact, when people are put under this much stress the cracks that they were trying to hide under the rug are exposed now that the rug has been pulled out from under them. If you have been thinking or talking about seeing a marriage counselor before you became a caregiver then I strongly urge you to do it now. There are a lot of therapists out there that specialize in helping people who have health issues. In fact, I strongly suggest every caregiver have a therapist but that’s a topic for another day.

Relationship problems are a very big possibility when there is disease and disability but if you are committed to making things work you can learn to reconnect and define what your relationship looks like now that life has changed. Being a caregiver and needing to be cared for are emotional lifestyle changes that often times aren’t addressed because usually action to save a person is urgent. There are so many things you go through as a caregiver and so much a person has to work through when they find themselves sick or disabled that it is sometimes a wonder that anyone can stay together. 

Becoming a caregiver for your spouse means your role in the relationship may have changed. Take time to figure out what those changes are. Find what parts of being in a relationship with your loved one is now missing. See what you don’t like about the way things are and know that simply wanting things to change is the best first step. It’ll take some time to figure out what your relationship will be like now. It’ll take some strength to have those conversations with the one you love or to be the first one to try to make changes. 

It’s worth it to find what this new relationship will look like for both of you. Take things slow and find help and support when you need it. 

You’re doing everything you can to support the person you love.

Don’t give up on focussing on the love.