Becoming a Family Caregiver (Some Considerations)

I was driving down a highway at 65 mph. My sister in the passenger seat jamming out to City Girls’ “Rich Bitch”. We were headed to a park to have a picnic as part of my sister’s new “community connections” services that I decided I would provide. My sister exclaims, “I’m a rich bitch!” Then proceeds to roll down the car window and throw her wallet out onto the highway. I pull over, all the meanwhile lecturing my sister about the safety hazard she just created. I dodge traffic and retrieve the wallet, much to my sister’s dismay. She is furious that I would go get her wallet back after making the decision to throw it away, and continues to try throwing it away for the remainder of the day. In her fit of anger, she refuses to go anywhere or do anything else and demands to go home. And this is only my first official day as her provider…

So I just started making my family caregiver role an official part of my schedule this week. I had made the decision to expand the time & services that I provide for my sister a couple months ago when the COVID-19 pandemic began. I was furloughed from my design job and I was left with a lot of time to think about how I could best help my family. However, this extra time between the decision and when I could safely visit my family again resulted in me repeatedly asking myself, “are you really sure you want to do this Chris? Are you sure you want to swap design hours for hours being your sister’s family caregiver? Really?” Ultimately, I thought, “Sure, why not? My sister is in a tough spot and needs some help and she listens to me more than anyone else (other than the TV). There’s really no one else that can do it. Let’s do it!”

However, there some fundamental and personal questions I had to ask myself before making my decision and applying to become her provider. Here is a list of these questions and some personal insight on them.

Do I want to?

This is the most difficult question of all. As siblings, it rocks us to the very core of our residual guilt to even consider not wanting to provide for our siblings. Asking this question is equivalent to asking, “Do you even love your sibling?” for a lot of us. Of course I love her/him, so naturally the answer would be yes, right? In, reality, it is OK to say no.

Frankly, my personal answer to this question is no. No I do not want to be my sister’s provider. I’m a designer. I’m not comfortable or familiar with psychology, care giving or anything health related. More importantly, our relationship works better as siblings, not as client and provider. Crystal and I are happier spending time playing video games or singing karaoke together instead of cleaning her room, doing laundry or setting community and future goals together.

This question is difficult because it turns the eye inward and asks you to evaluate your own perceived selfishness. I’ve learned through asking myself this that, yes, I am incredibly selfish. And I am going to own that selfishness, because I am entitled to it. I have the right to explore and live my own life, as does my sister. The only problem is that Crystal needs help doing that. So, because I do love and care for her, I am compromising and becoming her provider until she is able to move onto and/or trust someone who has more experience and skill in this role.

Does my sibling want me to? Do we even get along?

Why not ask the person most affected by this decision; your sibling? Do they want you cleaning and organizing their space? Do they want to share their daily activities with you or be left to make friends on their own? Do they want you reminding them to take their medicine or when to get a shower? Does my sibling even like me being around? or am I just in the way? Asking these questions can be instrumental in deciding how to move forward.

My sister is just recalcitrant. She fights authority or being told what to do at every opportunity, especially from our mother. Crystal and I are twins, so we share a lot. One thing we share is the need to be independent and being stubborn. This means that, naturally, her answer to this question is also a hard no. She doesn’t want anyone being her provider, let alone her bossy twin brother. She often vocalizes not wanting to be disabled. This hurts. However, we talk it out, and, in her own way, she agrees that this is needed, at least for the time being. Of course every reminder or request will result in an argument from her, but that is just a part of who she currently is. Once she sees that things are cleaner and more orderly or that we can have fun and have goals, she lets her guard down and it becomes OK again.

Do I have the time?

As an adult with a career and family of my own, this is half of the logistical battle. Sure, I visit my family often and we enjoy each other’s company. However, it takes on a new meaning and mood when you start trying to add goals, improvement processes, or thoughts of planning into the mix. It becomes another job.

Like most siblings in the thick of the future planning process, I just used my usual family visiting time to work on these steps with the family. However, I found that, due to the heavy nature of the subject matter, it was really putting a strain on my relationships with mom and Crystal, and we all kind of burnt out on it and visits just weren’t as fun anymore. Even with planned rewards and outings, it all just seemed so mandated.

Being on work furlough due to the corona virus gave me the rare luxury of reconsidering my career and life altogether. Ultimately, I decided I would cut my current design job down to part time, take on some freelance and use two days of my work week to become a provider for my sister. I figured I would still make some money and do the work with my family I came back to do all at once. My job agreed to this set up and I thought I had it all worked out. However, my design job flaked out on me and I may no longer have a job. So, now I am left with finding new work that is flexible enough to work with my provider hours or reconsider everything again.

Do I have the money?

The other half of the logistical consideration; money. Can you afford to live comfortably on the wages offered as a care provider. Unfortunately, most care providers struggle with low wages and eventually have to get other means of supplementing their income.

As a provider in Colorado, I make a different hourly wage per the service that I am providing. I get paid about $13/hr to clean and teach my sister to clean. I make about $17/hr helping my sister remember to bathe, take medications and helping her do it independently. However, I only make about $11/hr taking my sister out into the community, plus a mileage allowance. It is a seemingly convoluted and complicated system, plus tracking those hours and reporting them to the agency I work with is painfully complicated.

Additionally, you will have a cap on your hours per month depending on how your sibling is evaluated when initially applying for services & waivers. With my sister’s level of capability, she has a set budget of hours that I can get paid for. This results in roughly only $500 a month for me, and I think that is generous. So, don’t bank on being able to make a living by providing for your sibling.

Do I have the emotional strength?

Ah, the emotional roller coaster. Not just the old classic wooden coaster at the back of the park. This is the super jet-powered sibling version with loops, multiple steep inclines, even more steep drops, a ring of fire, a laser show and a fun house in between. We are all too familiar with our emotional struggles and achievements as siblings. These emotional struggles are personal and vary per family and situation. Make sure that you are considering worst and best case scenarios in your considerations and how that will impact you emotionally. Make sure you’re prepared to have all of those feelings amplified and be able to take care of yourself when these times come about.

For me, being a provider for my sister is like having a fast pass to the super coaster. The situations I find myself in when helping out my sister (and my aging mother) are just unreal at times. I often find myself thinking, “This is the worst. They have created another situation that is so bad that it is beyond my ability to imagine it happening. Bravo. Very creative ladies. Now I have to clean this up.”

The emotional struggle that comes with these situations and pouring your heart and soul into making things right for your family is real. Especially when your efforts are not received as you would have hoped. If your family is anything like mine, no matter the good intent, there is always an argument involved before everyone gets the gist of your effort. It’s exhausting and I do the best to take care of myself by using meditation and distancing myself to work on my own endeavors and life when possible.

What is the endgame?

You have to have goals. You have to make a light for yourself and your sibling at the end of the tunnel. Without having an ideal to work towards, you will run the risk of falling into a rhythm without improvement and possibly losing track of why you’re working so hard. Besides, most agencies will ask you to create goals for your services, so come prepared.

My sister and I have agreed that our endgame is preparing her to move to a host home and become independent/strong enough to do some travel. We have a hell of a lot of work to do before then, but we have some rough ideals that gives us some hope to look to when things begin looking impossible, as they often do.

Our journey will not be perfect and has gotten off to quite a rough start, but ultimately, we are working towards something together. I hope that making an “official” try at future planning as a provider makes the process easier by relieving some stress from a job that I would have had to do regardless of my career path.

How do I become a provider?

While setting up services for my sister via our community centered board (CCB), I asked how I would go about becoming a provider. They gave me a rather open-ended answer and let me do the research.

Essentially you will have to set up the service for your sibling via the CCB through an agency that offers the services you’d like. My advice is to ask your sibling’s CCB, or case manager for a list of your states providers, narrow down the ones that offer the services you’d like to provide, then contact them all to compare wages, hiring process and general feel to see if you’d like to “work” for them.

From there, if you’ve chosen the right place, the on-boarding and training should be easy.

The Sibling Leadership Network also has some great state-based resources here.

Share your experiences with me below!

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