How to Survive Spouse Caregiver Loneliness

Becoming your spouse’s caregiver can be a lonely and difficult road, more so than other types of caregiving. Part of the problem is that you’re not just taking on the added challenges of being a caregiver. You may also be losing key parts of who you and your partner were.

Some aspects of your relationship may change, perhaps forever. If your partner struggles to walk, for example, activities like hiking and running together may be off the table. Sexual intimacy may become difficult and even emotional intimacy can be compromised.

With so many potential changes, it’s no wonder that spouse caregiver loneliness is a big issue. Some caregivers feel like they’ve completely lost the love of their life, along with much of the romance and affection that they’re used to.

So, what can you do?

There’s no single answer to spouse caregiver loneliness, as the best approaches will depend on your situation and what matters the most to you.

However, there are things you can do. You can make the situation better… if you’re willing to think outside the box a little.

Don’t Just Be Their Caregiver

One of the most valuable pieces of advice that I’ve heard is to make sure you never just become your partner’s caregiver.

This means continuing to look for ways to connect as a couple. To still be romantic and affectionate.

This could mean planning date nights, bringing home flowers every so often, kissing one another gently… you get the picture.

To do this well, you might need to get creative.

Don’t just focus on what worked in the past. Instead, look for new ways, things that fit well with your current situation.

For example, if your partner struggles to leave the house, going out for dinner might not be an option. Preparing a romantic candlelit dinner at home could be on the cards, though. You might even convince a friend or family member to play chef for the night, giving you plenty of energy for your spouse.

Or, perhaps you have a picnic at home. Spread out a picnic mat and have lots of nibbles. You could even do this sitting on your spouse’s bed.

Those are just two examples. There are plenty of others, including simple and complex ones. The sky is the limit, especially if you and your partner both work on finding new ways to connect.

Look for Outside Help

Finding someone to help with some caregiving tasks can have a huge impact.

Some interabled couples take this approach, as hiring a caregiver can make it easier to balance caregiving and romance. Doing so also gives you a backup, decreasing the risk that you’re going to burn out.

This approach won’t work for everyone, but it’s worth considering and perhaps trying out. After all, you won’t really know the effects of hiring someone until you have done so.

Communicate Well and Often

Communication is important in any relationship. It’s even more critical when you’re a caregiver too.

Talking honestly and often helps to make sure that everyone’s needs are met. After all, you and your spouse are now in a different position than you were at the beginning of the relationship. Adjustments need to be made – and you can’t do so without first knowing where the issues are.

There’s a fantastic article at BraunAbility that talks about how caregiving and romance can be balanced well, from a couple who have been successful at doing so.

Believe There’s A Solution – Then Find It

This principle comes from Tony Robbins’ book Awaken the Giant Within and it’s one I love.

The idea is basically a mindset shift, where rather than spending a long time thinking about the best solution, you try different ones. Essentially, you’re finding the best way forward by trying, failing, then learning from your failures.

The best teacher is experience, after all.  

This is also a useful way to approach the issue of spouse caregiver loneliness because you don’t know what’s going to work.

There are too many variables at play to ever allow for accurate prediction. Trying, failing, tweaking, and trying again is much more likely to get you where you need to be. Plus, if you have the mindset that the whole experience is a learning process, then failures aren’t failures at all – they’re simply data points, telling you what doesn’t work.

Change The Script

As strange as this might sound, spouse caregiver loneliness often doesn’t come from the situation you’re in.

It’s much more strongly related to the change in your situation.

Your relationship has shifted. It was something else. It’s now this.

There may be a sense of loss. Of grief even, where you’re mourning what was and what could have been.

I hit into this suddenly when I was caregiving. My partner had never been well, but I’d always had the belief that things would get better. Or, at least, that they wouldn’t get worse. A couple of years in, I realized suddenly that the life I had hoped for was never going to be possible.

That realization was like a gut punch.

Grieving for what was and what could have been isn’t a bad thing. It may even be an essential way for you to cope.

However, for your relationship to go well, you can’t stay stuck in this story. Otherwise, you’ll end up constantly comparing what is happening to the idea of what should be happening instead – and never get anywhere.

The trick is to find a new story. A new way of looking at the situation that’s more empowering. Because your partner needing caregiving doesn’t mean your love story is at an end. It can simply be a new beginning.

Some ways of doing so include the following:

• Joy and gratitude: Start looking for joy in the small things. Start to really appreciate all the good moments in your life and relationship. The bright and shining ones. There are always some, even if the moments are small.
• Look for positive aspects of the change. Interabled couples sometimes talk about how their relationships have more communication than most. You may also have more quality time with your spouse than when you were both working.
• Look for new hobbies and ways to connect. Doing so helps to break the comparison between now and the past, while also reminding you that the relationship can be fun.
• Talk to other people, particularly those in a similar situation. Read blogs and listen to interviews too. Look for people who focus on the positive in their relationships, ones who are looking for ways forward, rather than being stuck in the negative.  

Make Sure Your Needs Are Met

If your partner needs caregiving now and didn’t before – other parts of your life and relationship will probably change as a result.

One aspect of this is that some of your needs that were easily met beforehand suddenly aren’t. We’re not just talking about the obvious needs either, like rest or food.

Instead, you might be missing out on things like variety, connection, physical intimacy, and personal growth. Such needs are often overlooked, but they can be just as important as the more obvious self-care needs, if not more so.

Sometimes you might need to look away from home to meet these needs.

For example, going out with friends can sometimes be a powerful way to have fun, add variety to your life, and step away from the caregiving role for a little while.

This isn’t something to feel guilty about. Instead, going out and doing things is a fantastic way to refuel yourself, giving you the energy you need to support your partner.

Remember Self-Compassion

Self-compassion is a simple concept. It just means being compassionate with yourself. Acknowledging the difficulties you face with kindness, rather than judging yourself harshly.

This is something that many of us don’t do.

We’ve been taught that such an approach is selfish or self-indulgent. That it’s better to be hard on ourselves instead. Tough love and all that.

But, for a moment, imagine someone else in your situation. How would you respond to them? What would you say?

You probably wouldn’t tell them to ‘get over’ what they’re feeling or say that their spouse has it worse. You’d probably comfort and support them instead. That’s what friends do, right? They have each other’s backs.

You can support yourself in the same way.

To do so, I recommend reading one of Kristin Neff’s books on self-compassion (like this one). She is excellent at stepping you through the concepts of self-compassion and provides plenty of exercises along the way.

Neff also has a more recent book called Fierce Self-Compassion. This one is focused on the idea of reclaiming your power as a woman, while being compassionate to yourself. It even has a section on caring for other people. However, this book is more hit and miss than her others, so I recommend reading the sample on Kindle before buying the full book. 

What If Your Spouse Won’t or Can’t Engage?

So far, we’ve mostly been talking about approaches that a couple can work on together. Ways to improve the relationship, even when the caregiving role is intense. Ways to make sure that you don’t lose the love and connection as life changes around you.

However, many people come to this place of loneliness because their spouse isn’t able to connect or no longer wants to.

This situation often happens with dementia patients. As a person’s cognitive ability declines, so too does their ability to connect with their loved ones. Many caregivers talk about how it feels like the person they loved has disappeared. Perhaps they’re a shadow of who they once were. Perhaps how they see you has changed as well.

There are other times too.

For example, people experiencing chronic pain or depression often pull back emotionally from those they love. They may not have enough leftover physical or emotional energy to connect with you as well.

What do you do then?

Some of the approaches we talked about above still apply, like making sure your needs are met and practicing self-compassion.

You also need to seriously think about yourself. What do you want? What do you need? What’s your limit?

Some husbands and wives choose to stay. To support their spouse and be loyal, even though they’re giving all they have and perhaps getting little in return. The decision to do so is often based in loyalty. Marriage is meant to be in sickness and in health, right?

Others choose to leave instead, finding that their new role is too difficult, costs too much.

This latter approach is often condemned, but it’s not wrong. You’re not being selfish either.

Marriage is a partnership. If you’re pulling all the weight practically and emotionally, then it may be time to leave.

There isn’t a right or wrong approach here. Each person and situation is unique. This is why it’s so important to think carefully about your situation and needs. To look at what matters to you and what you can cope with.