A View From The Other Side Of Caregiving
In mid-December, I went in for surgery. It was supposed to be one surgery, but in the end, I had three surgeries in three weeks. I also had the flu in between my surgeries. My second round of surgery was a far more difficult recovery. I’m not sure if it was difficult because the surgery was more invasive, or maybe I wasn’t completely healed from the first surgery. It could also have been more difficult because I have an autoimmune disease and Fibromyalgia, which make healing more difficult.
Whatever the case, it has been close to two months of being a caree. I had a tough time getting around. I couldn’t drive for a chunk of time. I couldn’t do much for myself since I had physical restrictions from the surgery. I’m a really independent person so this period was unbelievably difficult for me. I needed to rely on others for caregiving support and I didn’t like it one bit.
Before my first surgery, a good friend gave me a card with this quote:
“There’s strength in needing others, not weakness.” – Emma Thompson as Dr. Rosshilde in Burnt
As someone who prides herself on her independence and strength, this was just what I needed to hear. This was the first time I have truly needed to ask for help, even though I’ve had almost a decade of living with a painful autoimmune condition. Usually I’m able to push through and make things work, but this time, I was seriously limited.
What Your Caree Is Feeling
I’ve been a caree off and on over the years, but this is the first time that I truly was limited in what I could do and had to ask for help. Let me tell you, it was hard. Extremely hard.
If you are dealing with a difficult caree, part of the difficulty may be due to their frustration. If your loved one was once a strong, independent person, it can be incredibly difficult to suddenly need help. The more caregiving support they need, the harder it may be to accept.
We have an idea of what we are capable of in our heads. When our bodies don’t cooperate, it can be frustrating. And if you’re frustrated about your inability to do things that you used to be able to do, you may express that frustration by lashing out at those who are closest to you. You can resent the caregiving support, even if you know it is in your best interest.
For example, my mom stayed with us to help with the kids. She insisted on taking my kids to school. This was in my best interest because it was difficult to drive after my surgery and parking is tough, which means we usually walk a block or two to get to school. It also was beneficial because the last thing I needed was to be around germs while recovering. While I rationally knew this was what was best for me, it was incredibly frustrating to not be able to do what I should be able to do.
If your loved one is struggling with health issues while his/her contemporaries are still active and healthy, it can be really frustrating. Watching everyone get to live life how they want to while you’re limited or dependent on others can be depressing, particularly if the prognosis is long-term. It’s one thing to go through a health challenge knowing that soon enough, you’ll be back to your old self. If there is no end in sight, it can be frustrating, at minimum.
Helping Your Caree Accept Caregiving Help
If your caree is struggling with accepting caregiving support, there are some things you can do to help make it more bearable.
- Anticipate their needs. One of the most difficult things for me was having to actually ask for help. I’d rather just skip whatever it was I needed than verbalize my need. Dumb, I know, but for someone who is independent, it can be hard to ask for help. Now, I know you’re a caregiver who already has a lot on your plate, so I’m not suggesting you cater to their every need, but doing certain things that you know they need without waiting to be asked goes a long way. For example, my mom made smoothies and had some of my favorite foods ready to go in the fridge. I didn’t have to say I was hungry, I could just get what I needed without requesting help. Little things like bringing in the mail or stocking toiletries or the panty goes a long way.
- Lay low. While I obviously knew that I needed some caregiving support, I didn’t want to feel like an invalid. One thing that helped was that my caregivers didn’t make a big deal out of the things they were doing for me. Things just got done. I know that my mom was cooking meals for me and my family and cleaning up around my house, but she was doing it so subtly that it was kind of just happening in the background. When my mom specifically offered to do something for me, it felt intrusive, whereas, when she just quietly did things, I appreciated the help without feeling helpless.
- Let them lead. The first few days post surgery, I was able to do very little. I needed a lot of help. However, things got better and I started feeling a bit resentful that my caregivers weren’t “letting” me do things I was able to do. Let your caree take the lead. If he/she wants to make a sandwich, let them, rather than racing to do it for them. No one wants to feel like an invalid who can’t do anything for themselves. While you may think that you’re being helpful, they may get frustrated because there are some things they just want to do for themselves. Of course, if it isn’t safe for them to do so, find something that is safe for them to do for themselves.
I’m very fortunate that my need for a caregiver had an end in sight. I was diagnosed with early stage cancer that required surgery and I will take medication to keep its return at bay. I can now start returning to my norm, which still involves an autoimmune condition (that is in a flare because I couldn’t take medication for two months) and Fibromyalgia. While those issues aren’t a walk in the park, I’ve been living with them for a long time and know how to manage them without needing much support.
Living with illness and needing caregiving support from others is really hard. I know being a caregiver is also really hard, but it is a different kind of hard. No one wants to feel like an invalid. No one wants to have to depend on others for basic or not-so-basic needs. If your caree isn’t treating you the way they should, understand that they may be struggling too. It may seem like they have it made, having people who love them enough to want to help them but it is also really difficult to ask for – or accept – that help.