Two chic Black women grab coffee from an outdoor pick-up window. The woman closest to the barista is in a gold-customized travel mobility scooter and wears a fuzzy purple bucket hat, sweater dress, pink backpack, and red face mask. Next to her, the second woman waits in a pink coat and beret. Bits of snow gather on the ground and sidewalk while the cafe’s windows are decorated with coffee decals.

While the term caregiver is bandied about a lot in the disabled community, it’s important to distinguish between paid and unpaid caregiving.

Many of us have been caregivers in a less official capacity at various points in our lives—caring for children, parents, siblings, or friends during temporary or long-term health problems.

Most of us have needed a caregiver at some point—as children, when sick, or as our conditions or injuries have left us needing support.

For many of us, partners, parents, children, or friends have helped us when we needed it, and we may have faced a growing need for support as our conditions occurred or worsened or changed.

Sometimes, this transitions from occasionally needing some help to consistently needing a fair amount of help—and that’s when the question of hiring a caregiver tends to come up.

When and how is the need for a caregiver determined?

Many people with developmental disabilities participate in caregiver-related programs from an early age—and generally go onto SSI (and/or Medicaid) either at a young age (if the family is low income) or when they turn 18 (and are legally considered adults).

If you have a child with a developmental disability and need some help, you often can get support from your state’s Division of Development Disabilities (DDD) or a similar program. Also, children can often get support through their school system, another potential source for guidance.

If your child has any medical needs, usually their school system or health insurance provider can help with those evaluations and guidance.

It’s more challenging as a newly disabled adult (or one with new or worsening symptoms) to know what to do.

Often, with a new trauma that requires a hospital stay (such as some form of accident or sudden event), the hospital staff may give you guidance on next steps, such as a rehab facility, a visiting nurse, or other transitional care.

view inside of an ER during surgery - one person in scrubs looks and reaches behind himself to grab a piece of equipment.
If something severe enough to require more than an overnight visit happens, the hospital will likely advise you on what you need after your stay.

Well-run hospitals can often help you prepare for that transition to home after a long hospital stay.

When Al’s acetabulum shattered, for example, he had Occupational Therapy (OT) and Physical Therapy (PT) visits in the hospital, and before he left, we were given instructions on the local Visiting Nurses Association (VNA) to call and what help to ask for.

His insurance covered multiple visits from both a PT and an OT at home during the 10 weeks he wasn’t allowed to put weight on his leg, as well as scheduling return appointments to his surgeon to check his healing.

When there isn’t a single cause or a recognized huge life change, it’s often much harder to know when or if or how to shift from an informal caregiving system to creating a more formal or official relationship or relationships.

Making the call when you are the caregiver

I’m in the somewhat unique position of having been both a caregiver and a person needing one. I’ve been thrust into a focused caregiving position a few times, but the two most relevant events both revolved around my providing care for my partner, Al.

Handling uncertainty

About two years into our relationship, Al was in a car accident and received a traumatic brain injury (TBI).

Not only was I his caregiver in terms of managing his medical care, but also in doing what I could to help him through his emotional outbursts, and in the early days, encouraging him to eat and to rest as he dealt with constant dizziness and nausea.

The first few days were especially scary, but I think the worst of it emotionally was as I waited through months of what felt like minimal improvement and wondered if he could heal enough for us to be able to have fully healthy communication again.

Fortunately, he did, but he spent over a year in cognitive rehabilitation therapy. He had multiple medical supports, but I was doing most of the planning, anticipating, and in-home support.

I never thought to hire outside help, as the responsibilities weren’t ones that could easily be farmed out, and Al kept slowly adding to the in-home responsibilities he could handle.

For me, the big call was whether or not he could heal enough to regain his emotional self-control, because if he could not, it would not have been healthy for me to stay in the relationship.

I’m grateful that it never came to that.

Handling damage with a timeline

More recently, Al again needed me to step up into the caregiver role in a very different way.

After his hip injury, I was at his side the first week he was at the hospital, advocating for him, doing what I could to keep him as comfortable as possible, and trying to really understand what had happened.

I returned home to convert our apartment to be ready for his new needs. We needed to set up a bedroom downstairs, move things around so a walker could come through every room, try to open up the bathroom so he could get to the toilet, and basically change our living situation completely so that we could live entirely on the first floor.

Once he came home from the hospital, I became responsible for preparing all our meals (or ordering them), being present any time he got out of bed (he was a fall risk), appointment setting and management, and ensuring that everything was clear enough for him to get around.

Al sitting up in bed with Alison leaning against him.  A pair of crutches are visible in the background.
Al spent the better part of 10 weeks not allowed to put any weight on his injured hip. Lots of caregiving on my part.

We were able to get skilled help for his recovery and healing efforts (a nurse, PT, and OT), but I didn’t try to hire additional caregiving services because he would be slowly healing and he was going to need to keep the weight off his leg for the first two and a half months.

Since I didn’t have a job and really wasn’t in shape to get one (the emotional trauma of his injury triggered a relapse for me), I knew that I could handle the temporary responsibility and that he would slowly be able to handle more responsibilities as he healed.

He and I focused on how we could both get our needs met. We’d plan time for me to go out on walks (set him up so there’d be no reason for him to consider getting out of bed for a couple of hours so I wouldn’t need to worry), had his mother come by a couple of times so I could go out and see friends, and generally check in with one another to make sure that both of us felt like our needs were being met.

Caregiving is usually exhausting work, and even when temporary, it can take a lot out of you.

If you find yourself looking at a longer time period in a caregiving role, it’s important to evaluate what you can handle and how to get yourself a break long before you approach a breaking point.

Generally, it’s much easier to get small breaks than large ones—making plans so you get those small breaks can definitely be a game changer.

Deciding if or what kind of caregiving you may need

So I was diagnosed with Functional Neurological Disorder (FND) in 2003, and while I have always lived as independently as I can, I’ve needed support in some form much of the time.

At first, seeing doctors and getting appointments was pretty overwhelming, and my father often accompanied me to appointments, and my parents would give or lend me money to help me stay afloat (I was living in an apartment with a friend).

I found a good therapist and started building a network of helpful doctors. I didn’t drive due to my symptoms and so often needed to request rides, though I used public transportation when I could.

As the years passed, the main care support I needed was help with transportation (and the psychological support of company in certain doctor’s appointments) as my movement symptoms made driving dangerous and I wasn’t going to take that risk.

When Al and I started dating, his family had concerns that because I was disabled, I might be “too needy” and “hold him back,” but they learned that that wasn’t the case.

I actually owned a car but didn’t feel safe driving it, so he became our designated driver, with the car being in my name. He took me to my appointments and had usage of the car for whatever else he needed to do.

I don’t need assistance with any particular “activity of daily living,” though as I’ve discussed before, cooking sometimes is challenging, and I don’t reliably put energy into cleaning and household organization.

Al took on some of those responsibilities. He also tends to be an emotional anchor for me (another reason that his loss of emotional control due to the TBI was so problematic), which helps me control my anxiety and depressive tendencies.

Whenever I’d have a major symptom shift, we’d go through a readjustment of expectations—and usually he’d have several extra responsibilities (plus taking me to extra doctor’s appointments) while I figured out how to manage and adapt to my new symptom(s).

When and why I hired a caregiver

Al’s brain injury had occurred between my first and second years of graduate school, and I took the following year off due to severe symptom shifts that occurred during that second year.

About five weeks into my return, I no longer could anticipate symptoms hitting, and so had my legs collapse out from under me while using the stairs.

I did manage to catch myself and not fall all the way down, but the incident scared me, and the way my FND works, that basically meant that I couldn’t safely use stairs until after I regained that “early warning system.”

Al had finally found work again during my year off from graduate school, so he wasn’t around to help me up and down the stairs, and there wasn’t an easy solution to the challenge of our bedroom, bathroom, and living space being upstairs and our kitchen being a flight down.

This was going to be an issue every single day that he was working, and I was also going to be attending my graduate school classes remotely, so my energy needed to be focused on studying and classes.

Al and Alison stand beside one another inside a cave.
This was taken on our drive to Louisville for the MoRe program. Al was caregiving by being the driver for that long road trip —and that program eventually freed me from needing a paid caregiver!

At the time, I also couldn’t exercise regularly due to my symptoms and had been wanting to work on healthier meal preparation, which Al wasn’t particularly enthusiastic about.

It felt like a good, long-term solution was to bring in somebody who could help me with the stairs, take me grocery shopping, and help me with food preparation, so we agreed that the sensible solution was for me to use Medicaid to hire a Personal Care Assistant (PCA).

If you’re finding that your needs are outpacing your loved ones’ patience or ability to help, or if you need daily help just to function, it may help you and your relationship with others to look into hiring somebody to help you.

Also, if your partner, parent, or other loved one needs to make a major sacrifice (such as a job or a significant hobby/activity) to be able to help you—then it’s likely they should be paid for helping you (or you should hire somebody), if at all possible.

You don’t want to feel like a burden, and you don’t want to have them resent you.

While internalized ableism can push that “being a burden” feeling to occur unnecessarily, it can also be a useful tool for you to help evaluate if it makes sense to hire somebody—because it can be empowering to direct a person hired to help you, rather than the disempowering feeling of being dependent on others.

Learn about your options

If you really aren’t sure how much help you might need or where to get it, it may be well worth your time to look into your local Center for Independent Living. These centers are nonprofits by disabled people for disabled people staffed primarily by disabled people.

These groups are dedicated to helping others with disabilities find creative solutions to the challenges they are facing.

If you’re not quite sure what you need and you want to connect with others with disabilities nearby, reach out and see what they may have to suggest.

For practical suggestions on handling your current challenges, I can’t think of a better option!

There also may be other support programs run by your state. Here in New Jersey, we have the Division of Disability Services, and I’d think other states may have similar programs.

It may take some searching, but poking around in your state’s Health/Human Services web page may help you find some useful resources.

I do need to add the caveat here that, in general, government offices can be underfunded, overwhelmed, and/or less interested in your case than ideal.

It’s worth investigating, and there may be some very helpful people there, but that can’t be guaranteed.

Conclusion: Most people have needed and have been caregivers at some point

Most people need help and most people have helped others. When needs aren’t huge or you have a really strong social support network, caregiving is often a low-key and undemanding thing that doesn’t need to be formalized in any way.

However, there definitely are points when caregiving becomes a job, whether you need it or are providing it, and whether you want it to be or not.

The key is to recognize when and where that shift occurs and to understand how to keep the pressures manageable.

If you are a caregiver, think about how intense the needs are and how long you should expect them to stay that way. If you’re looking at a long-term and/or high-intensity commitment, then you may want to explore your options.

If you are the person who may need a caregiver, the two biggest considerations are likely your ability to be or stay independent and the risk of your caregiver becoming resentful of your needs.

I’ve also listed a couple of potential resources to check out if you’re starting to think about bringing in a caregiver. Don’t worry, there will be more posts in this vein to follow!

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6 Comments

  1. I think so many give unpaid care don’t they, out of financial necessity for the family. Particularly in situations where a person doesn’t qualify for disability and so doesn’t have any access to governmental support that comes along with it (in the UK), but also isn’t able to work full-time (or part-time).

    1. Claire – absolutely! Most folks are unpaid caregivers at some point, even if only temporarily. When we have long-term needs, contemplating hiring somebody or knowing we need to ask for more from our friends and family isn’t the easiest thing, but it’s so important to acknowledge our own needs, and find creative ways to fill them!
      Getting benefits is hard, and being able to get a reasonable caregiver is often harder. It often does fall to the family, which can create some really strained family dynamics, especially if there are already some issues within the family. Having a disabling condition often tries not only our own emotional strength, but also those of the folks closest to us, and sometimes their responses aren’t so great. Disability is another stress on any relationship and like all stresses can really bring to light things that would otherwise be hidden – both the good and the bad.

      I wish it was easier to get the help needed, and I wish we didn’t need to be near a breaking point to be able to get the help we need. I know that after Al broke his hip, I was so incredibly grateful for those hour-long walks I was able to take. They helped me on a lot of levels and gave me space to process my emotions without Al seeing every bit of it. That walk time was something he and I worked together to create, so we both would have that bit of private time even though he needed somebody around most of the time. It’s often possible to create mini-breaks even if somebody needs care 24/7, but it requires some communication and a shared commitment to preserving that respite. I wish it wasn’t so hard.

  2. I saw my aunt get really worn out and even put in danger as she cared for my uncle who was declining due to dementia. He lost his ability to talk, write, type (any communication other than some sounds and gestures). Towards the end, he was so frustrated he’d lash out in anger. It’s so frustrating that his doctor’s knew his needs, knew the trajectory of his illness and never sat down with her to give her resources. We had to figure it out on our own. What I found as I search online was advertisement after advertisement. Luckily, we had a cousin who runs a care center, and he had a lot of knowledge and resources. This is a helpful guide that you have created. I will be sharing it with people who find themselves in this situation. I just wish that our medical health system did more of this preemptively.

    1. Katie – I really feel for your aunt in that situation! She really should have gotten more support, especially from the doctor’s office or a nearby hospital. Unfortunately, these issues are super common and support from the government only happens if you’re already on the verge of poverty! Private care can be expensive, but can make a huge difference in quality of life for all involved! Being the primary or only caregiver is exhausting and not something I recommend, especially with somebody with growing needs like your uncle. Progressive conditions like dementia are, by definition, only going to get worse until the person eventually dies. Respite and related supports are so important so that you don’t long for that loved one’s death just to get a break!

      This is definitely just the start of a series of posts, so I’m planning on putting more and more detailed resources about the world of cagiving and paid caregivers.

  3. Thank you so much for sharing your full stories together, Alison. For the reader, it puts many perspectives in place and I enjoyed how you worked options and ideas here. Sending hugs from Taiwan!

    1. Thanks so much Carrie! There can be so much uncertainty with sudden injuries and with chronic conditions that I really wanted to lay out both Al and my experiences as both caregivers and care receivers. It’s so important to really think about the ramifications of every decision, and the fact that hiring a caregiver isn’t the end of the world either. There often are a variety of solutions to every problem and the key is finding the right solution for you in the moment, even if it means changing your mind later! *hugs* back!

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