Advice for young caregivers
|Wellesley's first high school still stands as a historical landmark/Photo by Douglas Flynn
Hello Young Adult Caregivers in Your 20s & 30s,
Are you out there? This is an open letter to you all. Are you sitting there wondering “What Happened?” and “How did I get here?” like I am? I bet you’ve noticed by now that life is unpredictable and ever-changing.
What we once considered our normal day-to-day life has changed. What happened to my routine? Everything is upside down and backwards. We’re now essentially parenting our parents – this can’t be normal, can it? This all has left me asking, “How do we navigate our “new normal?” How can we as young adults suddenly caring for our parents not just survive, but thrive in this new landscape?
Here’s my thoughts, and my situation:
I am 30 years old. I have a husband, a house, a career, and a cat. Life is pretty great. Three months ago I was in a meeting at work when my cell phone rang and life changed. My Dad called to let me know my Mom had heart trouble and was in the ER. With that one phone call from my 81-year-old father I suddenly became a caregiver for both my mom and my dad.
That was about three months ago now. Since then Mom has had triple bypass surgery, and two days later had a stroke. I feel confident that one day she will be back “up and at 'em” as she would say, but it’s not that way right now. Mom was Dad’s main support at home, so with her away now that’s my job. My “normal” has morphed into something I never imagined at 30 years old.
As my Dad insightfully describes it, I am currently a caregiver for individuals from two very different generations. Dad, at 81 years old refers to himself as “a relic of the Greatest Generation.” Mom, at 68, is a “Baby Boomer.” The way they both view and receive care is completely different from one another. One wants zero help; one wants all the help available. How do I balance this out? How do you avoid “babying” your parents? How do you handle the constant apologies (“I’m sorry you have to do this for me.”)? Honestly, this is the strangest phase of life I have ever encountered. Are you finding yourself in a similar upside-down world?
No two caregiving situations are the same. My experience so far isn’t the same as yours, although we might find some similarities. I am awkwardly navigating through this all although most of the time I feel like I am making it up as I go. It is working though. We can be successful at caregiving and maintaining our own lives. I’ve learned some survival tips over the past few months and I want to share them with you.
1. Friends Offering Help: A lot of people are going to be offering you help at first. In the moment you might not be able to think of anything they can help with, or you might not want to bother them. These people are your friends and they would not be offering help if they did not want to help. Remember, people like and want to be helpful! If you can’t think of anything they can help with, food is always a good option. Not worrying about making dinner is such a relief. Friends are you reading this? Gas giftcards are a good option if you are feeling like you want to help but don’t know how.
2. Taking Care of Yourself: The food topic leads me to No. 2. Remember to eat and take care of yourself! Don’t skip your own meals. Stick fruit and granola bars in your bag or in your car. Sleep. Sleep whenever you can for as long as you can. Breathe deeply. Cry if you need to cry. It’s OK to let yourself feel your feelings. This is hard! I once learned that feelings are neither good nor bad, they just are. So just let yourself feel them, get it out. Talk to your friends. Share your story. Blog, write, draw, read. You still need to be your No. 1. You won’t be able to thrive as a caregiver if you yourself are not well.
3. Resources: Explore your resources! Go online, Google everything in your area. Explore the wealth of information throughout this Caregiving MetroWest site. Call your local Aging Services Access Point, your local Senior Center, your local Day Programs. There is so much out there to help you. People working at these agencies want to help you find a successful plan. Don’t be afraid to call or make inquiries. You wouldn’t believe the amount of help available to you.
4. Social Media: Facebook, Twitter, Instagram- these might be the last things on your mind at this time, but just a couple words of advice: Be mindful of what you are posting about your situation. Absolutely create posts asking for recommendations for Nursing Homes or Hospitals. Ask for opinions on Acute Rehab versus regular Rehab. Just don’t post a play-by-play of your daily routine. You don’t want the world to know when you are not home, or that a house is going to be empty for a few weeks. Don’t accidentally make your home a target to anyone who may have ill intentions.
5. Work: If you have taken on the huge responsibility of becoming a caregiver I am willing to bet you are also a dedicated, hard-working employee. Talk to your boss. Talk to H.R. You are a good employee. They value you. They want to keep you on their team. Ask about Sick Time usage. Ask for information on the Family Medical Leave Act. These things were created to help us, don’t be afraid to utilize them. Even just having the information in the back of your mind will help put some of your fears to rest.
6. Voice Your Concerns: Don’t be afraid to be the “Squeaky Wheel.” Now I’m not suggesting you bombard the hospital/rehab/nursing home with phone calls, but if you have concerns, speak up! I’ve learned that these types of facilities change staff often, usually 7 a.m.-3 p.m., 3 p.m.-11 p.m. and overnight 11 p.m.-7 a.m. shifts. That is a lot of staff coming in contact with your mom or dad. Sometimes things happen and not all information gets passed on. We’re all human. Mistakes can happen. Things sometimes go unnoticed. Don’t bottle up your concerns. Speak up as soon as you have them. Check in often with the staff. Make your presence known at the facility.
7. Share responsibility/Set Boundaries: You cannot do everything for everyone all of the time. Take a step back and define your role. Where are you going to draw the line? It is NOT selfish for you to want to have your own life while being a caregiver. Find someone you trust to help share tasks and enlist their help. Use this HIPAA form so someone you trust can also call and check-in with the facility or get information on behalf of your loved one.
8. Give Yourself a Break: Honestly, cut yourself some slack. If something goes wrong, don’t beat yourself up over it. There is no roadmap for caregiving. There is no step by step guide outlining the “right way” to do this. You’ll learn what works as you go along. No one plans to parent their parents when you hardly feel like an adult yourself. It’s OK to make mistakes. Talk to other caregivers, find comfort and support in each other.
9. Really, Take A Break: Take a timeout, a breather, a vacation. Set aside some time to be alone and just be with yourself. Relax. Doesn’t matter if it is a walk to the end of the driveway and back or a weekend away. You will probably need some alone time to quiet your mind. Can’t get out of the house? Get out your earbuds/headphones, find a song that speaks to your soul, listen on repeat. Find your happy place. Find a mantra. Mine is “Inhale, exhale, repeat.” I like to keep it simple.
10. Safety First: If all else fails, just remember – safety first. Our goal is to keep our loved ones happy, healthy, and safe. So if you are having trouble making a decision, make the safest decision. If there are memory impairments involved this is especially important. Contact the Alzheimer’s Association for tips and tricks. As our parents told us when we were little, “better to be safe than sorry.” It’s OK to apply that same logic now.
Every caregiver’s experience is different. These tips may be useful to you, they might not be. Take what you want, ignore the rest. I’m trying to be open and honest about my experience and just hoping that some bit will help someone else out there. I’m just glad you’re taking the time to read about taking care of yourself and learning that you are not alone. The biggest take away here is to take care of yourself first, and don’t be too hard on yourself.
Please remember, this “new normal” that we find ourselves in right now is not permanent, this is all temporary. Life evolves, changes. Illnesses get better, illnesses get worse. We can’t predict the future. So again, remember, this is not forever, it’s just right now. Take a deep breath. Again. Inhale. Exhale. Repeat.
And if all else fails, coffee.
-- Contributed by Liz Tretiak,
Home Care Senior Manager, BayPath Elder Services