In 2014, my husband and I decided to hire the first of our in-home caregivers for our oldest son, C-Bear. We had no idea what we were doing, what skills to look for, or what kind of questions to ask. Amazingly enough, the first caregiver we hired, is still working for us, almost 8 years later.
What are Support Workers/In-Home Caregivers/Respite Workers/Relief Workers?
In the most basic sense, a caregiver by whatever name you call them is someone who provides support to seniors and/or people with disabilities, generally in their home. Caregivers can help with Activities of Daily Living (ADLs), or Instrumental Activities of Daily Living (IADLs) such as:
ADLs (sourced from The National Center for Biotechnology Information)
- personal hygiene or grooming
IADLs (sourced from The National Center for Biotechnology Information)
- managing finances
Many caregivers are paid through Medicaid but they can get paid through other sources of funding including private pay.
Why We use Support Workers for Our Son
C-Bear currently has a staff of 5 support workers to help him, plus me. I am still right there in the thick of things because even with 5 support workers, I am short-staffed. Some advantages of having caregivers for him are:
1. C-Bear can get the consistency of routine that I just wasn’t able to do when dividing my time between the two boys and my husband.
2. I can just be Mom. I don’t have to be his nurse, his Physical Therapist, his Occupational Therapist, or his Speech Therapist. Just Mom.
3. I can now delegate the tasks that C-Bear and I always butted heads on to someone else (brushing teeth!).
4. When I am not at home; I know that I have caregivers that are more than capable of taking care of him. No family, friends or babysitters to watch him that really don’t get his needs or understand why he “just doesn’t grow out of it”.
Part of what makes me trust the caregivers we have hired, is that we have clearly defined expectations, procedures and protocols. C-Bear’s caregivers are fully aware of what our house, dress, cell phone and COVID policies are as well as all the protocols and procedures I have created over the years. I make it is very clear to them from day one, what their responsibilities are and what is expected of them while they are in our home.
Determining What Is Needed
On top of having several family members that experience disabilities, my real-life job is working with families who use support workers, and from them, I have learned a lot over the years.
1. Sit down and really think about what support your loved one needs and when they need it. Is it before or after school? Is it only on the weekends? What kind of support do they need? Is it social, is it behavioral, is it medical or general housekeeping? Do they need to help with bathing, grooming, dressing, and feeding? If they are an adult, do they need help with transportation, budgeting, shopping, and meal prep?
2. Do the support workers need to have any special skills or training? Do they need to be CPR/First Aid certified? Will they be giving medications? Do they need to know how to use a feeding pump, oxygen or ventilator? How to properly, physically restrain someone? Do they need to know how to do laundry, be able to lift 50+ pounds, or be able to run?
3. What do you want from someone when they apply for the job? Do you want a resume, references, personal statement, cover letter and current work availability or do they need to fill out an application? How do you want them to apply? Do they need to call, text, email, or snail mail you their resume and other documents?
Beginning the Search…
In families who have kids that are eligible to have support workers, the parents tend to get very nervous about hiring total strangers. I have been there and it is very nerve-wracking and it doesn’t ever entirely go away, no matter how many people you hire.
So what we often see is that grandparents volunteer to become the support workers. One big con is that your parent (or in-law!) is now your employee and sometimes this can put a real strain on the relationship, not only between you and your parent but maybe between grandparent and grandchild, too. That grandchild has now become a source of income, a job instead of a joy. The same applies if a parent, family member or friend becomes paid to provide support.
When creating a help wanted ad, we always urge people to put a positive spin on the tasks a support worker will be performing. We don’t want to scare them off, we want to entice them. We want to get them excited about the work they are going to be doing in supporting our loved ones. Instead of saying, you will be supporting an 18-year-old boy by changing diapers every 2 hours, wiping pee of the walls and cleaning loogies off the front of his shirt, just say that there will be ‘personal care’ involved. If the person passes your phone and in-person interview and you are considering hiring them, that is when I would go into a little more detail on what that ‘personal care’ really looks like.
I’ve Hired. Now What?
Once you have found a support worker, give some thought to having certain policies and procedures in place, preferably before they start.
How do you want them to enter your home? Do you want them to knock on the door and wait to be let in or will you give them a key or a code? Are there certain rooms in your home that you do not want them in? Can they use your coffee pot or microwave? If they stopped at McDonald’s on their way to work, will the McDonald’s logo set off a meltdown? It happens!
How do you want a person to dress when they are in your home? It might seem like a silly question but it really isn’t. I have an 18-year-old son who needs full support for everything. If I hire a young lady to support him, I don’t want her to wear skirts or dresses to work, complete with high heels because if she is transferring him from his bed to his wheelchair wearing that, she is a danger to both of them. On the other hand, I also don’t want her to come to work in spaghetti strap tank tops and see-through yoga pants because… he is a teenage boy after all.
Do they need to cover up their tattoos and body piercings during their shift? Can they smoke at work? Do they have pets? This can be an important question if anyone in your home has pet allergies. Can they wear jewelry and or perfume?
COVID-19/Infection Control Protocol
What kind of COVID-19 protocols do you want them to follow? Do they need to take their temperature when they enter your home? Do they need to wear a mask and use hand sanitizer frequently? And most importantly, do they need to be fully vaccinated?
Cell Phone Policy
If you do nothing else, create in WRITING, a cell phone policy. It is the number one complaint we hear from families. Do they need to keep their cell phone in their car, in their backpack or purse or is back pocket okay? Does it need to be turned off or is silent or vibrate good?
Protocols and Procedures
It is a good idea to create procedures and protocols, depending upon the needs of your loved one. Do you need a seizure protocol, a PICA protocol, a feeding protocol? Is there specialty equipment that the support worker will be using such as a feeding pump, ventilator, oxygen, Vagal Nerve Stimulator, etc.? If so, you might consider writing out a procedure that tells them EXACTLY how to use it and when. Include pictures and videos if you can (create a private YouTube channel!).
If part of what the caregivers will be doing is handling money, let them know EXACTLY how you want things done. If the support worker and the disabled person are going to the grocery store and the support worker needs to be the one handling the money or debit card, do they need to put the change and/or receipts in a certain place when they get back home? Do they need to log the transaction somewhere? When money is involved, you can never be too cautious so make sure whatever your procedure is, you follow up on it frequently. Let’s keep the honest person honest.
If you were outside the home and they had an emergency that they needed to call 911 for, make sure ahead of time that they have your address, phone number, primary care doctor’s name, and phone number, what your preferred hospital is and what your loved one’s major diagnosis is, in a place they can find easily. Creating a To-Go Bag and a medical preference profile is also a good idea.
Regardless of their personal beliefs, our support workers need to respect our cultural and moral values. For example, maybe your family goes to church every week and your loved one needs support from a caregiver during that time but your caregiver is of a different denomination. By all means, you can require that support worker go to church to provide support. You are not requiring them to change their religion but you are requiring them to provide the type of support you hired them for.
We have a caregiver who does not celebrate holidays and that is her choice. However, if her shift happens to fall on a holiday that our family celebrates, she is there to make sure that C-Bear can interact with his family and partake in our rituals. She does not voice her opinion or make denigrating remarks because that is not what she gets paid to do. She is there to provide support to someone who needs help to celebrate with his family.
If you or your loved one is eligible to hire caregivers, go forth and hire! However, focus on the high points during the hiring process and plan to have your expectations, policies, boundaries, protocols, and procedures clearly defined so that there are no misunderstandings. It’s better to be over-prepared than under! If you are using family members or friends as support workers, be aware that them becoming an employee can change your relationship and at some point you may have to decide if keeping them as an employee is worth sacrificing the relationship you had. None of this is meant to discourage you but rather to point out potential pitfalls along the way. Forewarned is forearmed after all!
You might be interested in these posts:
Momma Bear’s Guide: When Planning To Use Caregivers
Momma Bear’s Guide: Help Wanted Ads for Caregivers
Momma Bear’s Guide: Interviewing Caregivers
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