THE UPS AND DOWNS OF BEING A CAREGIVER
News Flash: No one is perfect. If you are a caregiver, you are not a bad person for feeling angry that your life did not turn out the way you wanted. Your married couple friends are traveling the world and going to parties. Your friends are living the life you and your disabled spouse envisioned you would be doing in retirement. But, the reality is, you are now a caregiver for your disabled spouse. Welcome to the ups and downs of being a caregiver.
You Are Human
Remember that you are human. You are not perfect. Emotions are real. Life feels like a rollercoaster when you are a caregiver. Yes, it’s easy to smile during the good days. But, remember it’s ok to be angry or sad when the bad days arrive. Unfortunately, as your spouse progresses, those bad days will probably outnumber the good days.
When the bad days come, and trust me, they will, remember the love you have for your spouse. Focus on the good memories. Remember why you married him or her. Give him or her love and understanding. But, at the same time, remember you have feelings, too.
Allow yourself to be scared, vulnerable, lonely, angry and yes, even happy. Caregivers experience a multitude of emotions every day. It is not wrong to have emotions. What is wrong is not allowing yourself to experience and deal with these emotions.
Yes, you are happy you can care for your spouse. After all, you meant those vows you said on your wedding day “in sickness and in health.” You love helping your spouse enjoy the life he or she has. Spending moments making sure your disabled spouse does not want for anything is your goal. His or her happiness is your aim.
But, you are human. You sometimes have feelings of loneliness and isolation. You feel frustrated when your disabled spouse is upset. When your disabled spouse does not seem to want to be around you, you hurt. You are angry that your dreams for retirement have been destroyed. Mostly, you are tired. In other words, you are human.
Own Your Feelings
So many caregivers beat themselves up for having these very real, human feelings. They may feel guilty. You may feel like are a bad spouse. If this is you, STOP! It’s OK to have these feelings. These feelings have nothing to do with the love you have for your spouse. Let’s face it, caregiving is hard. Every family caregiver will agree.
So, acknowledge that caregiving is hard. Give yourself a break. Take the time you need. Allow yourself to experience your emotions. Maybe I should say, allow your self to HAVE these emotions.
No, I’m not suggesting you take out your anger or hurt on your disabled spouse. However, it is perfectly acceptable for you to leave the room and have a good, ugly cry. Or, step outside and scream if you must. You need to validate your feelings. Do not feel bad for being human. Most importantly, do not let anyone else make you feel guilty for being human.
Lack of Understanding
One of the worst parts is that other people, friends and family included, just don’t understand your situation. Empathy is not a trait most people have. Notice I said empathy, not sympathy. You see, almost everyone has sympathy – they feel bad for someone’s unfortunate situation. But, empathy is different. Empathy is the ability to understand someone’s situation.
Yes, you will get unsolicited, often painful, advice from well-meaning friends. My mom & I experienced it when my dad had a stroke years ago. I can’t tell you the number of well meaning people who would say to my mom “Why don’t you just put him in a nursing home so you can live your life?” Granted, some people are not equipped to be caregivers. My dad is blessed that my mom is. However, that didn’t mean those statements didn’t hurt my mom. In fact, such statements made her feel even more isolated.
Such statements may even make you feel angry. But, remember, these people have your best interests at heart. People have difficulty understanding bad events if they have not personally experienced such events in their own lives.
Until I watched my mom become a caregiver, I will admit that I did not fully understand everything that went into being a caregiver. All of a sudden, my mom wasn’t as available to go shopping or have lunch with friends. You see, she had my dad at home to take care of instead. Needless to say, she lost friends along the way. You see, these friends were not bad people. They just couldn’t understand my mom’s position as a caregiver.
My heart breaks for all you caregivers out there who have experienced the same lack of understanding. All I can offer you is to surround yourself with other caregivers. Find positive people to be around with who will uplift your spirits. Find support groups for caregivers.
Caregiving is a Full-Time Job
You see, caregiving is a full-time job but it’s also a job that never ends. However, that does not mean that you, as a caregiver, are not entitled to so time alone. You are also allowed, yes, I said allowed, to be afraid, sad, angry or frustrated. No one has the right to judge you for these feelings. So don’t feel guilty for having these feelings. Everyone has bad days.
But, try to focus on the positives -knowing that you are providing love and support to your disabled spouse. You are doing the best you can and you are a hero. So, have a cry, yell if you need to do so. Then, pat yourself on the back, remind yourself why you are doing what you are doing for your spouse. Remind yourself of the love you have for each other. Find support, get some rest and ask for help. Keep in mind that there are ups and downs in being a caregiver. Most importantly, know that you are appreciated – I am here to officially say, I appreciate, and admire all of you caregivers out there.