Rosalind Carter once said ““There are only four kinds of people in the world. Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers, and those who will need a caregiver.” Caregiving affects us all.
T - Today, Nick and I are having a conversation about caregiving. The idea for this conversation began when Nick, a former student of mine at Brown College, offered me the opportunity to preview his newest book titled Burn This City To The Ground, about his experiences with providing care to a client who had quadriplegia. It was an honest look at a topic close to my heart. The book will be available in November 2021.
Let’s start with some general background information so our readers know a little bit about who we are and how we became involved in caregiving. How did you first become involved with caregiving Nick?
N - In 2013 I went through a major mental health crisis. I needed a change in my life. Previously I had studied visual communications under Theresa but after testing the waters of the advertising/design industry I decided that I wanted to help people more hands on, one on one. When I was fully healed from my relapse, I applied to a job working as a temp DSP (direct support professional), eventually getting hired on with one of the companies I serviced. Nine months later I became a live-in caregiver for a person who was quadriplegic in Downtown Minneapolis. I have continued to work as a DSP over the years, assisting a myriad of clients who suffer from both physical and psychological impairments.
T- It will be interesting to compare our experiences. Mine stem from family. My Dad had an unforgiving form of MS and became quadriplegic when I was five. My Mom provided most of his cares with some weekly outside help for a while so I grew up in a caregiving environment. Then, when my oldest son was born with a rare syndrome, I began my journey as a primary caregiver along with my husband. My son was diagnosed at 2 months, so in addition to our significant medical journey, we were his advocates for education, which, in turn, became the base for my graduate school research. Caregiving has really been a significant part of my life.
How has caregiving affected you - beyond the paycheck of course?
N- I really feel like beyond having children, being a caregiver is the only way someone would need to put someone else before themselves. All of the sudden you have to put the needs of these vulnerable people at a higher level of importance. So, it is very humbling to perform even the most basic cares for a person. Helping them eat, use the restroom, groom themselves, all things we take for granted. I have learned to share my life with them in a way that helps them feel connected to the rest of society. I can’t stress the importance of maintaining a connection with these vulnerable populations. To give them familial, social and moral support. I have worked with clients who have very little access to family or the outside world and that is why I feel Theresa’s good example with her son is so significant. It has been difficult to see how disconnected from society many vulnerable adults seem to be. That has really affected me in a major way. Understanding those boundaries has really encouraged me to appreciate the time I spend with them.
T - I have seen this first hand at H’s group home. Two of the men he lives with are in their 70’s which makes family connections less common. One has no family involvement at all. When it is a loved one, the need to provide good care comes from the heart naturally but I am so grateful for caregivers like Nick, who provide quality care without the family connection. In addition to having quality caregivers at my son’s group home, I am impressed with the behavior changes in my son. He feels more grown up being in his own place and having quality caregiving was the only way to make that happen. It scared me and still does to trust others with his care, but so far, he loves his caregivers and they have been responsive to his needs. I am so grateful for every one of them. What are barriers you see to caregiving? I have to say I am shocked at the pay for such a physically and mentally challenging job.
N - You know, post pandemic there are so many barriers. You mentioned the low pay. I would say the biggest obstacle would be staffing. I work at houses where they need ten shifts covered on a weekend and only two will be filled the week before. We have administrators of all levels coming in to cover shifts like this and they are salaried so they don’t receive extra compensation. In terms of pay the pandemic has inspired a bit of a pay hike, maybe two to three dollars an hour for most workers. As always the Direct Support Professional/Personal Care Assistant industry is a revolving door. I would say half of the people who try it don’t continue. Whether it is the level of personal cares, the behaviors, the lack of support from the government. There are so many factors that create an inhospitable environment that allows only the most dedicated caregivers to hold on. I have been lucky to work at facilities with amazing staff and clients, so the lack of coverage isn’t as big of a deal. You have a lot of people working two or three jobs to make ends meet. Some work upwards of eighty to one hundred hours a week. As much as legally possible. I worked ninety hours a week when I was a live-in. When I wasn’t with my roommate I was working in group homes. That’s just the state of the caregiving industry right now. There are many houses that are well staffed and people are sufficiently cared for, but it is a revolving door and when someone reliable leaves it is difficult to find a replacement.
T - You have hit on a number of key issues. I think behaviors can be much more trying than physical cares. Special needs parents will often cite difficult behaviors as the most difficult part of the medical journey because it is unpredictable, limiting, and can include physical altercations. My son goes into meltdown mode if he hears a baby or toddler cry or scream. It makes it tough to go anywhere. Even now I tense up if I am at a restaurant and I hear a baby crying and then I realize he isn’t even with me. The hours of caregiving is another. As a parent, getting a break can be tough. Family members are not always able or willing to help and parents are much more limited to who they trust to be able to handle the cares for a child with significant medical. Your hours of caregiving within a house have the same limitations and need for a break to allow yourself to be an effective caregiver. Often caregivers can have a health decline because of the lack of support when breaks are needed and sometimes the guilt in asking. Caregivers often feel that they are not the client or family member with all of the medical issues and experience guilt which prevents them from asking for help when it is needed most. Do you have tips for avoiding or at least lessening the effects of caregiver burnout?
N - First off, I have been incredibly lucky that I have not had clients with a lot of behaviors, at the very least not directed at me. I guess I am a pretty cool dude and the people I take care of tend to like me (haha). Also, some vulnerable adults have zero people stepping up, let alone parents or other close family. It is refreshing to me when I find a client with an effective support system. It really brings a lot of joy into the house. In terms of burnout, I was a live-in caregiver for a person who was quadreplegic for three and a half years. It wasn’t always 24/7 care (there was a lot of downtime) but I was always on call and usually when I wasn’t at home taking care of my client I was working at my group home job. Now, my advice to anyone entering the field would be to resist the urge to make your job about the money. We all need enough money to survive. Let’s face it, being a low-income caregiver is not going to fill the void. The need is there for you to work as many hours as possible. Do not fill all of your hours with caregiving. If you have a second job try to find one in a different field so you don’t get burnt out. After my live-in experience working ninety-plus hours a week, I honestly worked myself to the point where I don’t know if I will ever recover. Ninety hours was just what I got paid for. It was an all day every day thing. Working forty hours should be all a person needs to work. I just don’t have it in me to just continually grind on myself everyday anymore. I think in the first three years I was a live-in caregiver I had three complete days away from my client. Two were attending my grandmother’s funeral and one was having surgery for stage three melanoma. This is a textbook example of someone putting everything into a system that really offers no benefit to a worker for giving more. The pride in doing good in the world cannot ease burnout. It really sucks. With the baby-boomers getting older and entering group homes and nursing homes, there is no relief in sight. It really is the next “battle of the bulge” in generational terms.
T - The aging baby boomers will exacerbate the strain on an already strained workforce. With turnover, I stress every time my son mentions a new staff entering his house. They are providing private care and I worry until he tells me how nice they are and how much he likes them. Every time. We have only had one staff person who he voiced concerns about and it worked out in the end. I am very fortunate that my son is verbal. I cannot imagine the stress of not knowing. I know many parents of nonverbal special needs adult children who are not comfortable with arranging care outside of their home because their child cannot express concerns. It does start to feel like a family unit. One downside is the lack of staff if anyone needs time off. In those situations, the guys end up missing out on an outing because of staffing shortages. We often bring treats for the whole house and not just our son because we know how he would feel if someone was getting constant treats and outside events when he had none. We have had dinner delivered, brought our dog over for visits, bring a house treat when we return from traveling and supply color books, games and such. The only thing we can’t do is bring any of the men at the house with us when we take our son to activities. Let’s move to the positive side of caregiving. I feel I have become a much more patient person since becoming a caregiver. I also think I appreciate people more for their differences, special gifts, and simple joys. What have you gained from being a caregiver?
N - Yes, I agree. I am a million times more patient and mindful of those who need support. I am also better able to be supportive without expecting something in return. We live in a quid pro quo culture so genuine giving, unconditional love, is rare. You need that to be a caregiver. Empathy, compassion, patience needs to be nurtured and developed like a skill. It’s a practice. You learn to love more, to have more gratitude for what you can do and for the fact that you can do something to help someone else. I don’t think people really understand that a good portion of the population is completely dependent on others (and not by any fault of their own). These are people who can’t even help themselves. The help they can offer their caregivers is a masterclass in loving life for what it is, especially through frustration, anger, fear and suffering. I think the opportunity to realize this is really significant and an invaluable empowerment that average people can do something as individuals to ease pain in the world. Most are apprehensive to do so because it is almost always at the expense of our own comforts. Do you have any amusing anecdotes about times your son tested your patience?
T - I do want to add that once you experience something, fear fades. So often, people will talk over my son to me, asking me what he would like or something that he can answer directly. Acknowledge persons with disabilities as people. Just make eye contact and say hi, treat them as individuals who are visible. Even people with lower cognitive skills know when they are being ignored.
The amusing moments are what sparked my interest in writing a blog. There are many. Some blog stories such as Coats describe his unique interpretation of directions and others such as The Bribe highlight what happens when you underestimate his abilities. I remember once greeting him and his PCA after an afternoon of bowling. He immediately went to the refrigerator to begin making his dinner. His PCA stopped him and said “is there anything you should do before making your dinner?” He loudly announced to his PCA ``we should wash our hands because we have been touching our balls all afternoon.” I remember on a family road trip when he asked to stop and use a bathroom. We found a gas station. Walking him through the store to the back, he began shopping for salty snacks. Knowing he has significant kidney disease, I said not now, we are here to use the bathroom and quickly moved him through the store to avoid an accident. He was not having it and said “I don’t need the bathroom. I just wanted a snack.” Soon he discovered he would not be getting a snack for adding an unnecessary stop (we had just purchased a snack for him at the last stop less than an hour ago). I made him go into the restroom but he clearly didn’t need to go. As we walked back through the store he again tried unsuccessfully to grab a bunch of junky snacks. He then determined he didn’t want to leave empty-handed and a trip to the restroom might solve everything. He started yelling “I need the bathroom” and was pulling toward the restroom area as I was pulling him back yelling “no you don’t” as a young guy walked by to use the restroom and stopped to see what was happening. I told the guy who was likely wondering why I was some sadistic parent who wouldn’t allow my son to use the restroom that I swear he didn’t need to go. He just laughed and joked “sure”. I’m sure you have many amusing stories, would you share a few?
N - Well, I recently wrote a book about my experiences with caregiving and there are many, many examples of finding humor while working in the industry. Clients who are physically disabled tend to have less of a filter and others who have a mental hindrance don’t know what a filter is. So, there is so much opportunity for laughter and lightheartedness. There is an amusing anecdote in my novel where I am dressing a pressure sore on my paralyzed client’s rear and she farts directly in my face. There was a moment where I could have been mad, disgusted or just plain horrified but you just kind of learn to make light of it. I think I compared it to a cool mountain breeze and then made a joke about being able to taste the previous meal she had eaten. There is a lot of toilet humor. Joking about the more, well, dirty parts of the job is a must to get past them. Some of the clients I laugh the most with are those who enjoy making fun of their disabilities. They don’t want to be treated any differently than anyone else. People enjoy giving each other crap. It’s a part of our everyday lives, so when one of my clients with cerebral palsy comes home I tell metro mobility they have the wrong house and then ask him if he has been drinking because of his random muscle spasms. These little inside jokes help get us through the day and we are constantly laughing. So, it’s not all doom and gloom. We have to remember that disabled folks are just like us. They want to be “in” on jokes. They want people to feel comfortable with them and humor has a big part to play in that. Once your clients are comfortable with you and you begin to understand their sense of humor, you will have a great time doing the job. Work can be a joy but as in everything, you have to take the bad with the good.
T- That is all so true. I remember the jokes and lighthearted talk growing up and my son and I have long standing inside jokes. He is a riot. I remember one of my first meetings with persons with disabilities when I was working at the MS Society. Part of my job as the Communication Director was to be part of the advocacy efforts. We joked a lot at home but I never had even considered joking with others I didn’t know as well. As I entered the room, the advocacy group, most with physical disabilities, were laughing and joking with each other using terms and language that was a bit shocking at first, then became just part of the group. I think you nailed it by describing that they want to be “in” on the joke. It’s human communication and connection. It’s what makes life fun. And my son and his buddies know when comments are lighthearted teasing and when they are condescending or mean-spirited. Their favorite tease is to be referred to as “trouble”. In fact, I refer to my son and his partner-in-crime, his best friend at his group home as double trouble and they laugh about being trouble every time I say it.
Let’s talk a bit about advocacy. I am currently working on raising awareness for piece-rate employment for persons with significant disabilities, those who will lose their opportunity to work if piece-rate goes away. These individuals want to work, take great pride in their job and cannot obtain and hold a minimum wage job because they don’t have the physical stamina or need direct supervision or physical help. I want those with significant disabilities to have a voice at the table and not have opportunities removed by those able to hold a minimum wage job or those who are unfamiliar with what this type of employment means to those who depend on it. Are there issues where you have an advocacy passion?
N- As a caregiver we really focused on “person centered” care. Person centered care is essentially helping disabled individuals live their best life and accomplish whatever it is they wish to accomplish (within reason of course.) That means giving every opportunity that we can find for them, helping them adapt to accessing these opportunities in “their” way and being very patient, supportive and considerate of their emotions and needs throughout this process. The goal of person centered care is to encourage a sense of normalcy, that they are a respected and important part of the community, and to reinforce it time and time again. People like H have limited opportunities to participate in everyday activities. If he wants to go to the movies he can’t just jump in his car and go whenever he wants. That’s why making room for vulnerable individuals to have access to what we all take for granted is so important. They want to have lives like everyone else. They want the freedom to do what makes them feel happy. I am just grateful the community at large is generally very supportive of that, although the access and infrastructure to accommodate disabled folks is not always there. Accessibility is still a huge issue that limits what people like H can do, but luckily there are some government programs that promote community activities, such as silver sneakers, which grants free access to places like the YMCA.
It all comes full circle to this idea that there needs to be more support in general, not just for disabled folks, but for poor communities, homeless communities. With limited government resources the powers that be kind of randomly pick and choose where the funding goes and as caregivers we also have to be mindful of that dynamic. All we can do is be patient and try to help when resources become available.
T - I so enjoyed having a conversation with you about caregiving and our different perspectives on this subject. I should share that I had the opportunity to preview your upcoming book Burn This City to the Ground. It is a raw, humane, compassionate, and humorous look at caregiving that I highly recommend.
Our blogs can be found here:
Theresa: All In: An Inclusion Journey https://allinaninclusionjourney.blogspot.com/
Nick’s book: Corners Untouched by Madness https://www.amazon.com/Corners-Untouched-Madness-Personal-Overcoming-ebook/dp/B07YBSNX8L/