by Amy Wilson
Being presented with a major diagnosis is never an easy thing, for the person affected, family, friends, and for the new people who will be in the person’s life as direct care providers. Dealing with what others consider a catastrophic diagnosis with my own son has led me to be passionate about advocating for better care, and helping to educate families and providers about how care should be delivered.
I love the saying, “Be the change you wish to see in the world.” It’s my personal motto and what I strive for every day. For years we had in-home nursing care for my son, along with weekly visits from OT, PT, Speech, case managers, a teacher when he was too fragile to go to school, and a host of friends and family that would be in and out all the time.
I learned a lot from the experiences with my son. His health has stabilized and we don’t have as many people coming in and out as we once did. These days, I spend my time on the other end as his caregiver. I am the invader, the elephant in the room, the necessary evil. I’m a full-time third wheel, and personally, I couldn’t be happier with what I do. I wouldn’t be doing anything else for that matter. It’s an honor for me to serve as a caregiver. Besides my family, it is my greatest joy.
I have noticed several things that most families and even caregivers are unaware of. I’d like to share some misconceptions families and friends have and provide some tips to make life a little easier for all involved.
The Person Inside
Aside from caring for my son, I have provided personal care for two adults with ventilators, as well as my favorite aunt and namesake, before cancer took her life. All three were totally independent, healthy, smart, funny, opinionated people who had likes and dislikes just like anyone else before their bodies decided to fail them. Guess what? They were still the same people after they became disabled. They were, and are, the same people that they were before their diagnosis.
The one thing that changes for individuals besides their physical health is everybody around them. While the person remains the same, everyone else changes how they interact. Everybody else gets weird. Not only are individuals struggling to deal with the new normal of life, but all the people they could and should be able to talk with about it also make them extremely uncomfortable. They don’t know what to say or do, so they either stay away or they are around too much. Sometimes the constant presence of another person feels more like assault to someone than a comfort.
Before you can provide care for another person you have to understand what your role is. Simply put, your role is to provide care in such a way that lets the individual be as independent as possible. You are a tool for a person to use to be independent.
It’s not about you. Ever. It’s about the person needing care. For instance, if you care for an individual who happens to like to listen to music then you listen to music. If he doesn’t want the TV on then don’t turn it on. Why? Because it’s not about you. The only reason you are there in the first place is because someone else needs you to help gain access to the things he wants or needs. I personally don’t do anything TO individuals I care for. I do things FOR them.
I don’t have a schedule that my son has to follow. He dictates the schedule to me and that’s what we do. Some days we talk quite a bit; others not so much. It’s not his job to entertain me. Don’t ask the person to not be himself or herself around you. If anyone needs to be flexible in the caregiving relationship it’s the caregiver.
There is no compromising on my part. We don’t negotiate terms. Between 8:00 and 3:30 I function as a tool for him to use. Because he has limited mobility, I am the tool he uses to move. I can’t decide he needs to be moved and just do it…I follow his directions. Personally, I’m terrible at reading minds, but directions I can follow.
Respect and Privacy
Just because someone needs personal care doesn’t mean that he isn’t still entitled to privacy. Unless before diagnosis the person was in a nudist colony, he probably doesn’t prefer everyone in the neighborhood to see him in the buff.
Additionally, if the person depends on technology to communicate, what she does with that technology is off limits to you unless she asks you to participate in what she is doing. For someone with ALS, for instance, eye gaze software can be a wonderful tool to continue to be independent. But when you have mobility issues and the only way to express yourself is typing on a screen, you’re a sitting duck for major privacy violations by people who may be well meaning. It has just never crossed their minds as to how it would feel to someone to basically have the ability to read their mind, and check their email or read their personal text messages.
We all have things that we don’t care to share with others. We all think things, and some of us, myself included, write in a journal. I do that for myself alone. It’s very personal, and much of it I don’t ever plan to share with anyone. Ever. If I were to become mobility challenged, I’d still want the ability to continue to do that, or compose an email to a friend without it being read. I’d still want and deserve privacy just like everyone else takes for granted.
When You Need Another Caregiver
Caregiving is not something that just anybody wants or needs to do. Some people, especially family members, find themselves in the role of a caregiver, and they may not be wired for it. They are trying to just fly by the seat of their pants.
My husband is not a caregiver. Don’t get me wrong, he loves our son Hunter, and wants to make sure his needs are met, but he’s not wired like I am. He spends plenty of time with Hunter. They play games, he takes him places, they do Dad and son stuff, but my husband has never been comfortable with personal care and I’m glad he doesn’t try to do it. It would just make him and Hunter uncomfortable.
In some cases, a family or person requires one or more additional caregivers to provide extra assistance beyond what the family can provide. This can obviously lead to challenges. For the family or person receiving care it is always a challenge trying to decide how to let someone know that the way they are delivering care is making you uncomfortable or cramping your style. For me, I was always thankful that people cared enough to want to help with my son, and the last thing I wanted them to think is that I didn’t want or need their assistance. I also didn’t want to offend them by asking them to stop doing something, or to do it a different way. Many times I’d just deal with the uncomfortableness that it created for myself rather than say something and risk offending the ones I depended on.
The best thing to do is communicate. If someone is providing care in such a way that he or she becomes another obstacle to overcome and not a door to independence, that needs to be communicated. Something a nurse or personal care provider might be doing may be driving the entire family nuts. The caregiver will want to know, because change cannot happen without him or her knowing.
If at any time in a family’s life a parent needs the freedom to speak about the child’s wants and desires, he or she should have that freedom. When someone uses the liberty to share feelings, caregivers shouldn’t take it personally.
Principles of Caregiving
If you are a caregiver or if you are a family who receives care, my hope is that this will be a conversation starter for you today. For the caregivers who read this please know that your efforts are appreciated. You are needed and the service you provide is invaluable to the people you care for. For people who may read this who are receiving care, please share your thoughts with me on things you’d wish caregivers knew.
As a mom, a caregiver and a friend, these are the things I try to keep in mind when I am providing care for my son or anybody else:
- Don’t do anything TO someone, do it FOR him or her.
- Privacy should always be a priority.
- Sometimes the best care you can give someone is none at all.
- Be mindful that you can either be a door for someone to gain independence or another hurdle for them to overcome.
- You shouldn’t ask the person you are caring for to compromise his or her personality for your sake.
- It’s not about you.
Keeping these things in mind can help you avoid being an unnecessary burden for a person who is already dealing with a lot. Dealing with a major illness, injury, or diagnosis is tough all the way around. There is no question about that. There are many adjustments that you have to make in your life that you never before considered, and it’s all new to everybody involved.
Be the change you wish to see in the world…now. Parents go talk…caregivers LISTEN.