Check in with how you are feeling regularly, and remember that your emotions are valid.
Make sure you have support in the task from a professional team, friends, or volunteers
Establish new routines for your loved one and your family.
Take time for yourself, and seek out emotional support.
When you become the caregiver of a loved one who is in hospice care, so much of your life changes. Your responsibilities grow enormously, and your routines are shaken up. Particularly if you have taken your loved one into your home, with the accommodations and accessibility additions that entails, it’s typical to feel like everything has transformed and you no longer have complete control over either your space or your time.
Caregiving is exhausting, both physically and mentally. As you look after your loved one’s health, it is important to take stock of your own needs as well. Check in with yourself regularly to get in touch with your thoughts and emotions. Try not to judge yourself for whatever those emotions are—whatever you feel is valid, and guilt over not feeling the way you think you’re “supposed” to feel is a stress you don’t need to add to your plate.
Navigating these days doesn’t have to be completely overwhelming. By putting a few strategies and structures in place, you can make sure you’re showing up the best you can for your loved one in this challenging time.
People are naturally creatures of habit. Our routines provide us with comfort and can help us get through tough times. The disruption of your day-to-day is part of why caring for a loved one in hospice is so difficult.
It can help to establish new routines or to adapt your usual ones with your loved one and the other members of your household. Mealtimes, leisure activities like watching TV together or going on walks, or ritual-like chores like gardening or bath time for children, are all things you can look to include your loved one in.
Perhaps you typically would cook and eat dinner as a family, but it’s too much for your loved one to move to the dinner table, or you’re too busy now to spend time cooking. Instead of forgoing this important family time, you can adapt it by spending some time around your loved one’s bedside catching up as a family, the same way you’d do at the table.
Look for ways throughout your day to carve out a sense of routine and stick to it as best you can. You, your loved one, and the rest of your family will feel comforted knowing what the daily plan is.
Speaking of a daily plan, one crucial way to avoid burning out as a caregiver is not trying to tackle it all alone. Make sure you have a team of professionals in place—nurses, social workers, health aides, etc.—who will help ensure you don’t have to be on 24/7. If your loved one’s plan does not include paid care, make sure you have help from family and friends who can give you a break.
Once you have a solid team in place, create a schedule that works for your life. After all, you will most likely be juggling your job, family obligations, friends, and more. It’s often not feasible to (and you shouldn’t have to) put your whole life on hold because you’re caregiving.
If you feel like you don’t have enough support, you can also look for volunteers from groups like Hospice Foundation of America. Volunteers may be able help with various things like chores or errands, or can just visit and spend time with your loved one.
Having a team in place helps make sure you can take time for yourself. Under normal circumstances, you probably prioritize doing at least one thing you love, whether it’s exercise, relaxing with a book, or going out into nature, to keep your life balanced. It’s essential that you keep up these practices even while caring for someone else.
Even though it might feel counterintuitive or even selfish, especially when your loved one is having challenging days, taking time to yourself helps you process your emotions and recalibrate. When you come back to your routines and responsibilities, you will be better at those tasks if you’ve filled your own cup.
We all have our flaws, including our loved ones. And this doesn’t change when they become ill and need to rely on other people to take care of them. They may be stubborn, rude, ungrateful, or even lash out at you, and you might feel frustrated, irritated, or downright mad at them sometimes.
When you’re struggling to get through to your loved one, do not take their lack of cooperation personally. If they’re able to maintain a conversation, have an honest talk with them about how you’re feeling and the importance of things like taking medications, following doctors’ orders, and being receptive to help.
In many cases, a discussion like this might not be possible or effective. Talk to your loved one’s medical professionals about your concerns and stay open to their suggestions.
Whether it’s a close friend, a dedicated group, or a paid professional, someone (or multiple someones) who is available to just lend an ear without judgement can be the key to getting through this difficult time. No one should have to go alone through the range of emotions that comes with watching a loved one decline while being their primary caregiver. Like any challenging undertaking, having support as you go through it will be crucial to doing it the best you can.
There will be inevitable ups and downs, no matter how well prepared you are. Knowing to expect the unexpected—and knowing to let yourself feel unexpected emotions—can help make the day-to-day easier, even on the hardest days ●
Grief isn’t a feeling. It’s a process. Everyone experiences it differently, and you are the only one who can feel your feelings. But some understanding may help you come to grips with what you are going through.