First, I would like to say that I greatly respect the work of those who do caregiving for a living. You should know that even if all you do is sit there, you are giving immense relief to the people going through a very hard time. Your presence is appreciated.
To those who are doing the caregiving for their own friend or family member, please know you are not alone. It’s so, incredibly isolating to be a caregiver. It’s very true that you find out who your true friends are when things get tough, and often, many people who you thought would be there for you, are not. But the opposite of that is true as well. It’s often the people you don’t expect anything from at all that step up to the plate to give you a helping hand. It’s important to be open to help in any form it comes in. Be accepting of it.
As my mother gets closer to the end, I’m learning a few things the hard way. So if you find yourself in the same position as me, here are some things to remember.
You are only one person.
It is impossible to be two places at once. You will need to divide and conquer. That person you don’t know very well that offered to help? Try taking them up on it for simper tasks. Ask friends to run to the pharmacy for you or drop off a few groceries for you if you can’t get out of the house. Rely on delivery services where possible. Many grocery stores offer delivery these days and you can even order food from amazon! Pharmacies ship medications you fill regularly as do many other place you would normally need to go to.
Meet your own needs.
You hear it again and again from everyone who does not have to do what you are doing. “Take care of yourself or you’ll get sick“. I think I’m sick from hearing that so often. It’s great advice, but in the thick of it, your own needs come last. That’s just the nature of the beast, especially for those who are very, very sick or dying. It’s easy advice to give, but it’s much harder advice to put into practice. So think small! If you have to, sit down and make a list of your basic needs that need to be met every single day, or in whatever frequency you need. Devise a plan for making that happen. You know you can’t do much extra, but everyone needs their basic needs met. Simple as that. Skipping a shower for a week or two does nobody any good and is horrible for your morale. Ask somebody to sit with your person for an hour or so while you shower and tend to what you need to keep going.
YOU. CANNOT. DO. THIS. BY. YOURSELF.
If you are fortunate enough to be dealing with hospice (and I say that for your benefit, not because it’s fortunate that somebody in your life needs hospice), make sure you get a full list of the services they offer. It’s pretty extensive and well worth a few moments to look the list over. Not only did I get massages for my mom while she was in bed, but they offered free grief counseling for my son. So get to know your resources. And in case this needs saying, if you are just getting started with the process of caregiving, you should find those resources while things are still less intense. Everything may feel overwhelming in the beginning, but believe me. It only gets worse as the person becomes more ill. So scout out your resources now so you have something to fall back on.
Avoid the crap.
It’s so easy to start depending on convenience food when it’s difficult to even leave the house for groceries. This is my situation right now. The only time I can leave the house is the 3 hour window when my mom has another caregiver. It’s intense, but those 3 hours save me and my son 4 days a week. Please know that there is a difference between junk food and convenience food. Try a salad bar meal to go, or grab a whole, rotisserie chicken somewhere. You don’t want to run your immune system down further by trying to survive off garbage. It’s so not worth the consequences! Thankfully, I’ve done pretty well with this. I’m sticking to low carb eating simply because it curbs any cravings I may otherwise have and I’m eating mostly clean. But that’s only because I am surviving on frozen/steamed veggies and rotisserie chicken. It may be a limited diet, but at least I’m getting some good nutrition during a very difficult time.
It will feel like you are completely alone. Please know that there are people out there who want to help, but often don’t know how to offer that help. So reach out! Post something on Facebook if you have to, but do everything in your power to keep people around you. I don’t have many friends in this area and my mom is the last of my family beyond my son. So it’s really easy to feel completely alone. I feel that way daily, actually. But I do reach out to friends via text messaging, facebook and so on. It’s not ideal, but it helps. Just reach out.
Let them go.
The people who you are really hoping to hear from, but never do…. let them go. Give them your blessings and let them go. Don’t be hurt by it, just know that they do not have the ability to be there for you in the way you need them to be. It’s often those who you are closest to that get really uncomfortable when things get serious. They don’t know how to help and the hopelessness of your situation makes them really uncomfortable. Thats okay. Give them your love and wish them well. Maybe they’ll come back when this is over, maybe they won’t. Some people are only meant to bless our lives for a short amount of time. Some people simply to not have the emotional tools with which they can help you. Death, dying and serious illness tends to show what people are made of. It’s not that they don’t care for you, it’s that they simply cannot handle the magnitude of your situation. There is nothing you can do to fix that, so wish them well, and move on. Animosity during a time like this will only hurt you. It may feel like you are losing a lot by losing a friend on top of everything else, but truly, if they can’t deal with the situation you probably don’t want them around anyway because you’ll end up taking care of them too, and you don’t need that right now. You have enough on your plate. So do yourself a kindness and just let them go. Somebody else will show up at some point. They usually do. Just be open to those who are actually there to help. That’s important too.
Get used to bodily functions.
If you’ve never had kids, you’re in for a surprise. If the person you care for is very ill, you will need to get used to the idea that you must have intimate knowledge of how their body is working. Number of bowel movements, seeing them naked, even washing their behinds. You have to get comfortable with the idea of doing things for somebody who can’t do for themselves any longer, and that includes keeping an eye on what their body is doing on a daily basis. It might not be anything you would ever want to know about somebody, but it’s important.
Right now, my mom’s bedroom has been moved downstairs into the family room and I’m sleeping on the couch because she is totally out of it and gets up a lot at night. She’s a fall risk, so I don’t feel safe sleeping upstairs in my own bed.
I’m at the point where if people don’t call me or come to my house, they probably won’t see me or hear from me for a very long time. But I had to get to a place in my own mind where that is okay, simply because I have no more to give at the moment.
I’m terrified about her passing and even about what will happen to me and my son after she is gone (we can’t afford to stay in our new house) This is one of the hardest things I will ever do in my life. Frankly, being a single mom with little support will feel like a cake walk when this is all over. But I’m happy I can be here for my mother during this time. As hard as it is, it’s a blessing in it’s own way. And right now, I need to count every blessing I have.
And so do you.