This is more of a difficult post to write and have out there because of it’s brutal honesty. I think it will be helpful for patients to prepare themselves and also for caregivers to learn before they’re in the caregiver role. I’ve learned things that’s made me feel guilty for how I’ve helped or sometimes didn’t help in the past. Because of what I’ve gone through, it has changed me in how I will reach out to people in need and how I will offer help. I want this blog to be happy and positive, but also true. This post is meant to be helpful to those reading and hopefully will be beneficial. I hope it’s one of those things that will help me, help others when they need it in the future.
Things to do and not do as a caregiver or even a visitor:
I hate when people say, “let me know…” NOOO you decide and you tell me when you’re coming over or what you’re bringing. It’s taken me all these surgeries to learn to ask for help and to get better at receiving the help and allowing it in. But now I’m so sensitive to how some things are phrased. I’m not going to reach out to you, I don’t know your schedule and it’s much easier for me to tell you what time of day is best for me to have a visitor. Or even better, if you’re bringing food over, don’t necessarily require a visit at the same time. Be ok just dropping off the food at the door so there’s no stress or pressure of being put together enough to have a visitor. Maybe I want a nap, maybe I’m in too much pain or maybe someone came over to grab me and take me for an outing. Just give me a time you’re dropping by and we can go from there. I don’t have the energy; plus I don’t want people having all these expectations.
You’ll also learn what kind of visitors your friends and family are. I’ve decided there’s about three types.
- They come over, you’re happy to see them, have a visitor but then you just really are ready for them to go so you can rest.
- They come over, they’re super helpful and attentive, you feel comfortable in front of them and it’s genuinely good company.
- These are the best. You feel the most yourself in front of them. If they’re visiting and all of a sudden you’re tired or don’t feel good, you can fall asleep, get sick or whatever you need and know that they’ll still be with you or they’ll leave and let you rest. You don’t have to ask anything of them, they just know what to do and when.
You will become very dependent on your sole caregiver. It’s a weird feeling of dependency too. They do everything for you, know your routine and are often on the same page with you on your needs and wants during recovery. It is quite stressful when that person changes. You get emotional and scared when there’s a new person coming in as sole caregiver, but it’s ok, I learned they’re just as scared and just want to be helpful and to not hurt you. It’ll take a few days to transition and adjust, but everyone gets the hang of it after a couple of days.
Caregivers need to know that the patient will probably have moments of frustration and that it seems to be normal for them to throw their crutches at one point or another. I speak from experience and I also speak for lots of other hippies who have shared with me that they threw their crutches at least once during recovery. Looking back, it’s pretty comical to think about, but in the moment, I was so frustrated that it was the only thing I could do to get some sort of release. Now, I don’t recommend doing this, if you’re alone. Those crutches are your life line and if you throw them, while it might feel good in the moment, you’re technically screwed without them! I think I threw mine once or twice in my first recovery and ironically, never threw them in my second recovery. The caregiver might not think it’s funny or even realize how upset you are that you needed to throw them. So I would recommend, if you are a caregiver, don’t laugh, just pick them up and give your patient a hug. You both can laugh about it later, but in the moment, the patient just really needs some extra love. For those of you who have felt the need to throw them, but haven’t (P.S. DO IT next time!) or for those of you who have thrown them and now feel ridiculous about it, know that YOU ARE NOT ALONE. It is so normal and ok to feel that way.
People have a limit in their amount of compassion, support and time to give and their overall sense of caring. Recoveries let you know who your true friends are. You see the people who really step up to be there for you (even if it’s not in person). I learn more and more with each passing surgery, who will be there for me no matter what. Who put their stuff aside, so they can support me. Those people don’t care what number surgery it is, they just want to support and care for me. On my third surgery (well technically 4th), there were way less visitors and help being offered. It’s a hard thing to learn, but I think my friendships will be better off. I know where and who to put my focus and attention on. It’s a really hurtful lesson to learn and I’m already a very sensitive person, but I’m learning to not let it affect me as much as I used to. It stills hurts a lot though.
Pain is exhausting and can put me in a bad mood and I know I’m not alone with that. As a caregiver, just support the patient in whatever way they need on a high pain day and don’t be sensitive if they’re in a bad mood. Do NOT tell them they are being negative or get mad at them. That is not helpful, nor true. On the patient side, it is so hard to find the balance of putting yourself first during recovery and being honest with your caregiver(s) and not making them mad or over it. It is a hard place to be in for both people and therefore both sides need to be forgiving and understanding of each other. It requires a lot of patience from both sides. This is a very emotional journey and that needs to be understood because man do the emotions flow during recovery.
It sometimes feels like everything is our fault. It induces so much guilt. Nothing’s worse than just being so upset with the pain, dependence and everything else going on and then to top it all off to feel like an inconvenience and guilty for feeling that way. It’s honestly isolating.
Sometimes I feel really guilty, but what comes out is anger and then I feel like a shitty person. It’s a constant battle of emotions. Our caregivers don’t really know what or how we’re feeling. It’s always so great immediately after surgery and then, just like everyone else around us, they move on to their own life. And if we say anything, we’re in the wrong because all they do is think and care about us. But it doesn’t always feel like that on our end. I do have a hard time associating with caregivers that aren’t overly caring because I am a nurse and I’m also a care giver by nature. I struggle with remembering that everyone is different in their caring abilities and their amount of care they can give. For example, I’d want to say no to having my caregiver leave for a weekend away, but actually I wish they would just say no and get it on their own. I don’t want to say no because then I sound needy and controlling. It’s basically a lose lose for the patient anyway it’s spun and I think that’s the part I struggled with the most. Yet I am the one that loses out on something that I need. And yes these situations are about both needs and wants. It sucks!
These lessons are hard. Really hard. I think, subconsciously, I knew I’d probably lose some friends through a process like this, but learning about family in these types of depths was a shocker for me. To me, family will ALWAYS be there. No matter what. Well, lesson learned the hard way, they aren’t. True colors will shine and everyone has their own life to live. Friends can show up just as strong as family and for that I will always be grateful. Keep your hearts and minds open during the recovery process and don’t ever forget how you were treated or made to feel during the low times. That is people’s true selves and you get to learn a valuable lesson through it.
To my tribe, my circle, my people:
To everyone who surrounded me with so much love and support, I thank you and will always thank you. It means more to me than you will ever know. I will forever be changed from my experiences and I hope to be an even better, friend, daughter, partner, caregiver and nurse. This is now my story and I will continue to open up and share it and maybe even inspire people with it.