- Don’t forget to take care of yourself!! – This is the most important one on this list. You are no good to your loved one if you are burnt out. It is not selfish to take time for yourself. It’s easy to lose yourself in the process of taking care of someone. You have to remember that your health is important too. So take time to unwind, read a book, watch a movie, go out to dinner with a non-spoonie or another caregiver. It’s important to have someone you can vent to. Not because you necessarily want to complain. I’m sure you certainly don’t mind and even enjoy taking care of your loved one, but let’s be honest, it’s stressful.
- Let them do what they can. Often times we want to be so helpful that we jump at the chance to get our loved one their drink, or hand them the remote that is 6 inches away from them, but two feet away from us. It’s important to let them do things for themselves. You have to remember that they are capable human beings, let them chose what they can & can’t do. They will ask you for help when they truly need it, but don’t make them feel worse about themselves by just doing something for them, at least ask “Do you need help with that, or may I get that for you?”
- Remind them of who they are. I can’t tell you the number of times I’ve heard someone with depression say “I’m useless.” Just because they can’t do the things they used to, or maybe they can’t walk anymore, whatever their circumstance DOES NOT make them useless. That person they’ve always been is still in there. It’s important to make them feel needed. That feeling you get after you help them, they need to feel that too. They may not be able to do something physically, but tell them it makes your day when they make you laugh, or that you just simply enjoy their company. If they are capable of doing something for you, let them. I have often told my husband, I’ll get my own dinner, or I’ll pour my own drink. It’s just a simple gesture, but it hurts his feelings when I don’t allow him to do things for me. Just like I enjoy doing things for him, he in turn enjoys doing things for me. And who doesn’t enjoy being pampered a little?
- Allow them to feel their emotions. We all have the sudden urge to just wrap our arms around our loved one and make them feel better. We want to protect them, and not let them think bad thoughts about themselves. The truth is though, we all get that way sometimes, and we all need to work through them in our own way. Let your spoonie be sad, angry, frustrated. You can certainly console them, but they are allowed to feel the way they feel. Don’t degrade them by saying things like “You don’t need to be so angry about this.” Or “You’re getting upset over nothing.” It might be nothing to you, but it’s something for them. You may not think it’s that big of a deal that you need to tie their shoes, but think about how they feel. It’s frustrating to them that their hands won’t let them do such a simple task. Remind them that it’s not their fault, and that they’re doing the best that they can, that you’re proud of any progress they’ve made, but let them have their space to feel whatever emotion it is they need to feel.
- If you truly don’t understand something about their situation, ask them. It’s important to understand the way your loved one feels. The more know about their circumstance, the more you can help them. While I encourage you to research their condition and find out everything you can about it, it is also important to remember every person is different, every situation is different. Go directly to the source. Find out that makes them tick, what you can do to support them both mentally and physically. Let them do their best to explain what goes through that head of theirs, only then can you get a grasp on what they’re going through, and only then will you be able to appreciate your own efforts at helping them.
- Push them to their limits, encourage them, and make them fight. This may sound harsh, but it’s important to make them understand they are not completely incapable. Sometimes it’s easy for them to get lazy. I don’t mean they had a hard day, used up all of their spoons, and now need to rest. No, I understand that, that is not laziness, and if you think otherwise, well …you shouldn’t be a caregiver! I’m talking about their passions, their abilities, their goals. This is where it’s important to truly know your spoonie. You have to know what their capable of. They will often feel worthless and like they can’t do something, and they want to give up. Don’t let them. Push them to do the things you know they are capable of doing. Push them to reach those certain goals that you know they can reach. Do not enable them by saying “It’s okay, you don’t have to do anything you don’t want to do.” NO! I hope you wouldn’t tell this to your child, so don’t tell it to your spoonie. Get angry if you have to! This fire in you shows them how much you care, how much you believe in them! They will thank you for it later!
- Just have fun! Find things that you and your spoonie can do together and do them often! Have fun with them, and make them feel that you’re not missing out on life because they’re holding you back. There may be things you enjoy doing that they are not able to do. That’s okay, that’s what your non-spoonie friends are for! There are so many things you can do with your spoonie, don’t let them feel like their holding you back. In fact, quite the opposite, they are teaching you to not take your health for granted, they teach you what the human mind and body is capable of, and they teach you how to relax. When all they can do is lie on the couch, grab a blanket and lie down next to them. Engage in deep conversation, watch a movie, or just be with them while they sleep.
So basically, don’t lose sight of who you are, don’t let them lose sight of who they are, and learn to lean on each other. You both need each other! It’s important that your spoonie feels loved, knows that he/she is taken care of, and also feels independent. Talk to each other, guide one another, and most importantly love one another. Don’t ever forget why you started caring for your spoonie, and be the same person you’ve always been!
Once again, if there is any way I can support you, please do not hesitate to reach out to me, whether you are a caregiver, or a spoonie yourself, or just someone who needs someone to talk to! That’s why I started blogging. You will make my day!
And as always, remember to always keep fighting!!
Love & life lessons,