My dearest friend from college was stricken with Lupus. The symptoms she experienced were just horrible. Before I lost her, she suffered numerous ugly complications for years and I honestly don’t know how she survived any of them. We joked she was indestructible. It was going to be her, Cher, and cockroaches left when the world ended.
My best friend was battling Lupus
When I first began taking care of my parents, I would drive back and forth from my home to theirs on weekends which was about a 90-minute drive. I found the commute so much easier to take by talking to my friend on the phone. We would carry on about lots of things, she would tell me what was going in with her physically, and I would update her on my parents and my emotional challenges.
It struck me during one of our extensive conversations that she had a completely different take on the caregiving experience than I did since she was the one being cared for.
I asked her how it felt to be on the receiving end and was surprised when I got an ear full! We were always authentic and honest with each other, so there was no holding her back. She clearly stated how difficult, annoying, depressing, frustrating, and infuriating much of it was and how she hated it.
She shared with me how she hated someone hovering over her
Although she was grateful that people were giving her a hand, it also made her so angry. Not only because she had lost her independence and her normal life, but she was made to feel incapable and diminished. She hated people hovering over her and often felt like she wasn’t heard. In some cases, felt she wasn’t included in discussions or decisions. In her opinion, people she considered “helicopter caregivers” who hover over everything in her life and illness, constantly trying to take over control were not only annoying but demoralizing.
I realized I was a Helicopter Caregiver!
I wasn’t insensitive to or unaware of my parents’ issues and discomfort with needing help from someone other than each other for the first time in their lives, but my friend’s adamant and strong reaction gave me a big “ah-ha!” moment. I suddenly questioned my caregiving style and my parents’ feelings and realized that I too, was hovering over both of them way too much. I was a helicopter caregiver!! Jeez!
I grilled my friend about how she would prefer to be treated, what bugged her about her caregivers, and what she thought she needed from someone who was helping her. Her insight was so helpful and gave me a starting point to begin adjusting my behavior and caregiving style. Here are some great tips for grounding that helicopter you might be flying around those you care for.
1. Talk to your loved ones
Have a conversation about the extent of care they think they need. While this may not end up being realistic, this allows them to express their feelings and gives you a clear indication of their concerns and wishes. Even if they are giving you a hard time about needing help, there is information to be gained and an understanding to had about the challenges and fears they may be having about letting go of control. Get those out into the open. Let them know you are scared and worried too!
2. Read the room
So often I would make plans and have an agenda and low and behold, the plans had to change, and my agenda was thrown out the window. Since I am such a control freak, this threw me off my game. My rigidity and insistence we stick to the plan upset all of us. I had to learn to read the room and acknowledge and accept what was happening in it. Things can change on a dime in caregiving and by being aware of my parents’ mood and reactions to change I was able to adapt and shift my priorities and make adjustments that considered everyone’s needs.
3. Always include them
Even though my Mom became overwhelmed and confused easily, she always appreciated when I approached anything by trying to include her in the process. It took so little to include her as though she was making the decision or communicate that I would gladly entertain any thoughts, wants, or desires she had. Just by trying to sound as though I was asking her instead of telling her what we were doing set a tone of voice and energy that was respectful and engaging. She might not have understood everything, but she felt and heard that I wanted to include her, and what she wanted was important.
4. Let go of your way or the highway
I didn’t mean to be a helicopter caregiver but all of my life I felt safer when I was controlling everything, doing it all alone and doing it my way. I could be a team player but felt that I had all the answers and would always end up taking over. Caregiving taught me that I needed to let go of this bossy, unrelenting tendency and be open and receptive to my parents’ needs, wants, and opinions. My way is not the only way, and my way can be the completely wrong way! By letting go of doing things my way, I was able to honor my parents’ choices, learn alternative ways to handle my life and theirs and they felt so much more involved. It’s so helpful to be open to new ideas and input.
5. Relax
Controlling everything, doing things my way, and being hyper-vigilant was not easy and takes lots of energy. When we are taking care of someone we love even when it’s well-intended, it’s so easy to be overbearing when we are overwhelmed and worried. I was so afraid of things going wrong or something bad happening that I was tense, rigid, and bossy. When I was able to relax and take things as they unfolded it was so much better for all of us. It’s never easy to relax when we are responsible for the health and wellbeing of others but going with the flow does end up being the most effective and efficient way to handle life as a caregiver. When I am relaxed and balanced, I’m responding instead of reacting. I have the strength and energy to meet the everyday caregiving challenges because I’m not exhausted from trying too hard.
Stay grounded!
Take a good look at your caregiving style. Are you relaxed or hovering and super vigilant? Are you serene or are you running out of gas trying to keep the helicopter circling? Try these tips to get grounded and stay that way. Find a place to safely land that helicopter and take a break from all that flying around!
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Susanne, love this piece! As someone who’s played on both sides of the fence I have a better understanding now that I am the one being cared for, and it is complicated. It’s hard and somewhat debilitating to feel that lack of control as a caregiver and the caregivee, further complicated by my stubbornness and male ego!
Thank you for being so honest! It is complicated, but the power of your example in sharing how you feel sets the stage for solid communication which makes this journey bearable and even easier. Self awareness and empathy on both sides helps tremendously I think.
Thank you for having this blog and writing about this subject. My parents are 90 and 87 and my role in their care came up quite suddenly. My youngest stepsister (whom I have only met twice) decided over the summer that she was going to sell her house out of state, move in-state to a new house, and move my mom and her father to that house. She was making all of these plans without consulting with anyone, including my mom and her dad. Mom and John have been married 25 years and have done fine on their own during that time. Mom’s mental status has been declining over the past five years and John’s physical status has declined over the past five years. As a former nurse and a retiree, I had always planned to help them out when the time came, but I didn’t see that happening for about a year. My sister moved in with them for six months over this past year and she came to realize that they needed help on a daily basis, even though they put up a good front whenever family came to visit. Mom and John firmly refused to move from their retirement community to a strange home in a strange city, leaving their church, physicians, and their belongings. During a family Zoom meeting with both sides of the family, Mom and John firmly expressed their commitment to staying in their own home. So, I took on the role of live-in caregiver, leaving my own home, grown granddaughter, whom I raised, my son and his wife, my home, and my parttime job to come and live with them. I don’t want to helicopter, and I want to make sure they are comfortable having me here. I am still a daughter and mom is still the boss and I am trying to treat her declining mental status with respect. After reading your post, I think I am doing ok, but there are times when I know I overstep, especially when it comes to nutrition and safety. I am also connecting with the surrounding community, i.e. church, volunteering, and online classes to keep me busy and engaged, but there are times I am completely mind-numbing bored. Any suggestions?
You are most certainly doing ok! I fact you are a true Caregiver Warrior and you inspire me. It’s hard especially in the beginning to find that balance between stepping in and helping and the trying to fix things that might be too much for them. And then it changes as time goes by so it’s even harder. I was constantly adjusting how much I would do or say and sometimes it worked and sometimes I floundered. But we just need to start over and over and pay attention to how they respond and how we respond. I got better over time. I also had conversations with my parents about the help they needed and what made them upset. Sadly, my Mom needed much more help than she was willing to admit but this way she felt heard and acknowledged. I would then do whatever was necessary and that often meant I would try to do certain things until it really annoyed her, then back off and try again if that was possible. With time I found a better balance and as her dementia worsened , she fought me less. It’s really an ongoing attempt to do what needs to be done, and trying numerous times to find a way to make that happen. As for being bored, I always wanted to ride horses so I found a barn near my parents and took an hour every Sunday and walked around on a horse with other ladies who turned out to be caregivers. I made friends for life. We have to do things for ourselves so we don’t feel like our lives are completely on hold. They don’t have to be. But we need to make sure we know we deserve to do things we like and take breaks doing it. I reached out to family and friends often to stay in touch and find things to do with them even if we did it in my parents home. I also made sure I got breaks when I needed them. We deserve to do fun things that make us feel fulfilled. Even for 10 minutes a day. I hope this helped and I’m sending much love.
I have been living with my mom and stepdad for three months now. He is 90 and physically fragile. Mom is 87 and mentally fragile. I am trying not to be a helicopter caregiver, giving them their space and trying to relieve John’s stress about mom’s memory loss, and keeping them safe. I have a question (actually, many, but one will do for now). When it becomes a matter of safety and/or nutrition, is it ok to press harder to come to an understanding? Mom gets agitated when I cook meals for her and I. She would live on spinach and onions seven days a week, but I need a variety of foods. I tell her I have to cook for myself, so I make some for her too, and she has the choice of whether to eat it or not, but sometimes she gives me a hard time about cooking. She does seem to enjoy the meals I make, however. I don’t want her to feel bad about not preparing meals and I think this is behind her objections. Any suggestions?
It’s hard not to be a helicopter caregiver! Believe me I know! My Mom would also give me a hard time abou the meals I made or bought. I tried all sorts of things which is what we do, but what finally worked best for me was to try to ignore her displeasure, keep my sense of humor around it and not take her complaints or disapproval personally. I told myself she can’t help conplaining or giving me a hard time because that’s who she is! It has nothing to do with me actually. So I would try and shrug it off or placate her with , oh I’m sorry Mom, well I already started it so we might as well eat it, or ah ok Mom, or whatever you say Mom…or anything that might calm her. It really, however, came down to doing everything I could for me so that what she said or did didn’t affect me as much. As long as she ate that healthy meal it was a win. Seeking my Mom’s approval was always a big deal for me so I had to work on not needing that as much and understanding that my Mom was always difficult but now she was sick and suffering and I was the one making the decisions to keep her safe and as comfortable as possible. It’s very hard for our loved ones to relinquish control and for us to take over. That fact that she’s eating your healthy meals is a victory! Now try and feel less guilty or upset if you can when she is being snarky or difficult. You are an angel walking on earth. Give yourself credit and try to remember that. At this point you know best. If you can, don’t let her get to you. They can’t help themselves! I hope this helps and I am inspired by your love for her.
Thank you for the encouragement. I find it is getting easier day by day. It is a slow process, but I am learning to back off. Its hard because mom has good days and bad days and I never know which one she is having when we get up in the morning! I appreciate the chance to vent here. I am learning a lot!
And you are teaching us a lot! By sharing your story, you make us feel less alone (and crazy!). Caregiving is a process and I always have to remind my self it’s progress not perfection. My Mom always had good days and bad and as she was devastated by Dementia it only became worse. It was hard to know what to say or do. But when we care for them with love I do believe they feel and know that and eventually we learn how to soothe ourselves and know we are always doing the best we can. You are a true Caregiver Warrior.