When a family member or friend is diagnosed with a chronic or terminal illness, there are a lot of questions that run through your head. This biggest one is probably, “What can I do to help?” Being a caregiver for an ill loved one doesn’t have to be as hard as you think. Yes, there will be challenges that you will face, but with the right tips and tricks, you can face these challenges head on and become the best caregiver you can be for your loved one.
Decide whether or not you will personally care for your loved one, you and other family members will do it together, or you will look for outside support from a professional caregiver. If it's something you can afford, sometimes having a professional caregiver, someone who is less emotionally invested in the situation, can be more productive. Your loved one may also have preferences regarding their care, so be sure to have open and honest discussions.
At first it may be hard to consider how you will make time for providing support or even believing that you have the skills to do it, but you can do this. If you have other family members or close friends who can make time to help, build a support team. And if you're not sure what to do or are feeling overwhelmed by the decision or the changes, try talking to a family counselor or your faith leader. Seeking help for dealing with the stress of having to become an instant expert in caregiving can provide relief.
Get Back Into the Groove
Try to incorporate participation from your loved one in daily routines and responsibilities. This will reinforce and honor their self-respect and capacities. Your loved one may not be able to do physical work like cooking or cleaning, but ask what they would like to do. This will help them feel like they are still contributing to the family household.
Whether you laugh or cry, or just laugh until you cry, it’s all good. Keep sharing how you feel with your loved one. Disappointment, frustration, sadness, and worry are all natural emotions. You are both on this journey together, so it’s important to take time to discuss how each of you are feeling. Get things out in the open rather than keeping them bottled inside. It may help you avoid saying something you don't really mean or wish you hadn't said.
More than likely you know someone who has been in a similar situation and has had to take on the role of caregiver or make decisions about caregiving. Ask if he or she wouldn’t mind sitting and talking with you for a bit. Someone who has “been there” knows how it feels when circumstances feel out of your control. These people can share their experiences with you and help you get through your difficult time, too. If you don’t have someone like this in your life, consider looking into a nearby support group for family caregivers.
Know When to Say No
You can't be everything to everyone. You can't do everything for everyone. There may be times you have to turn down a friend's invitation. There may be times you can't volunteer at the kid's school. Give yourself permission to say no.
Do your best to reduce the amount of negativity in your life and keep stressful interactions and experiences to a minimum. Especially during an already stressful time, putting yourself into a situation you know will be negative or stressful won't do anyone any good, especially you and the loved one you're caring for. Instead, seek out positivity. Surround yourself with positive people and positive activities.
One of the best things you can do for your loved one is to listen to them. Do they feel comfortable with the caregiving situation? Do they know you are there for them and that you are taking good care of yourself in the meantime? Do they have any desires, worries, or needs they want to share with you? Is there anything that can make their situation better? Do they feel included in the decision-making? Feeling truly heard can be a major comfort to your loved one and can also support their path to better health and better quality of life.
Patience is a Virtue
If you lost some of your independence or were no longer able to take care of yourself, you might feel confused, angry, frustrated, cheated, and any number of other emotions. Try to have patience with your loved one just as you would want someone to have patience with you. You may have to develop "thicker skin." You may need to take the occasional break. You may even need to scream out loud to no one on the car ride home every once in a while. But try to exercise patience.
This may require paying attention to common interactions you have with your loved one and noting situations where you want to be more careful about losing your patience. For example, does your loved one's health require you to walk with them at a slower pace? Do they sometimes knock things over or spill things on themselves? Do they get frustrated when they can't accomplish something and lose their own patience?
Recognize there will be things that can't be helped. Try to build patience with those things. But also recognize things that can be helped. In those situations, having an honest conversation about what each of you is doing to push each other's buttons can make the days go smoother. Or try making suggestions that can keep things from getting strained:
- "I can't walk as fast as you. I need you to slow down for me."
- "I think I could do that on my own if we put a handrail in here."
- "Do you mind if I move these things to another room? It could make your path to the kitchen easier."
- "I know you get frustrated when I ask you if you've taken your morning medications. Could we come up with a system where I know the answer without having to ask you, like marking off the day on the calendar with an X or using a pill box?"
- "There are certain things I like to keep in the refrigerator. Can you add them to the grocery list?"
- "Would you mind doing a puzzle with me once a week? I miss doing those."
- "Sometimes I just want something simple for lunch."
Remember, sometimes the very act of needing someone to come with them to a doctor's appointment can be frustrating for your loved one. Unless you are in a position of advocating on their behalf because they can't do it for themselves, keep their level of independence in mind. Don't talk over your loved one or assume control of their care without their permission. Do they just need you to give them transportation to the doctor's office, but would rather have you stay out of the exam room? If you're in the exam room, do you respect that it's their appointment? Do you let them get all the answers they need before you ask the questions you have for the doctor?
Although you may be intensely focused on caring for your loved one, it is still important to find time to unwind. Make time for activities you enjoy that will help you de-stress, even if that’s simply reading, walking, or taking a bath. If you are exhausted or run down, you will not be able to be the best caregiver you can be. Plus, if your loved one sees that you’re not taking time for yourself, they can begin to worry about you, which is not good for their health.
Laugh Out Loud
Most people forget to laugh in situations like this. We have been taught since childhood that it’s disrespectful to laugh when a situation is serious, but laughing changes the body’s chemistry in a positive way. Laughing decreases stress hormones and triggers the release of endorphins, the body’s natural feel-good chemicals. Endorphins produce an overall sense of well-being and can temporarily relieve pain. There is a reason why people say laughter is the best medicine.
Now that you have some caregiver tips in hand, remember to act on them. Reread this post regularly to remind yourself of some of the things you need to to do for your own health and well-being. Read other articles we've posted in this blog about caregiver tips. Keep expanding your understanding of caregiving and strive for positive changes that make your loved one’s life and care even better. Remember, you can do this!