Caregiving Series Part 1: When I Needed a Caregiver
There has been a lot of discussions lately about caregiving in this country. The national conversation has centered mainly around it being part of the 400 billion-dollar infrastructure bill currently being debated in Congress. While I was glad to see a policy distinction made of caregiving as being "human infrastructure," I often find myself frustrated that the real-life details of what caregiving actually is, get lost in the conversation.
While I could fill this post with articles and statistics, I feel like that would just be doing more of what I'm tired of seeing happen when talking about caregiving. What I want to do instead is offer up some personal perspectives on the issue, starting with my own.
I was 25 years old and was back living with my mom in Washington State. Having lived for a few years in the midwest after college, I found myself feeling homesick, so I moved back. Also, at that time, my health was slowly deteriorating in a way I wasn't even fully aware was happening. Long story short, my Bi-Pap sleep apnea machine wasn't supporting my breathing well enough at night, and it was slowly leading to acute respiratory and heart failure. I spent almost a month in the hospital in the ICU, trached and on a ventilator for most of that time. When I had recovered enough to close my trach and be off the ventilator, I was discharged to go home. Even though my health was more stable, I was still extremely weak and oxygen-dependent.
Our home was a two-story house, and thankfully, we had just spent much of the prior few months setting up the downstairs as an apartment for me. There was a small kitchenette complete with a mini-fridge and a microwave. My bedroom was down the hall, as was the bathroom, laundry room, office, and access to the garage. I really didn't need to go upstairs for anything, which was good because that wasn't happening any time soon.
My mom worked full-time as a school teacher. It was summer when I was in the hospital, so she was off from school, making it easier for her to help take care of me. But soon, she'd be returning to the classroom, so we needed to figure out who could help fill in on the caregiving. Lovingly, my older sister stepped up. According to caregiver.org, 85 percent of caregivers care for a relative or other loved one.
In the early part of my recovery, she came to see me for a few mid-morning hours every weekday. She would help me get up, bring me my medicines and prepare my food for the day. She also helped with any dressing, bathing, or personal care I needed. I was still on oxygen at this time. The nasal cannula I wore was like a leash. It was attached to a large oxygen "K" tank in my bedroom. That size tank is similar to the size of a helium balloon tank you see at party supply stores. It was attached to a cannula that was 100 feet long, allowing me to move around downstairs. I wasn't using a mobility scooter yet, and I had just started walking with a cane. Poor bed positioning in the hospital resulted in severe nerve damage in my leg that required me to use a cane to help me walk. I was learning to adjust to so many new things.
As the weeks passed and I got stronger, my sister’s visits evolved into every other day and whenever I had a scheduled medical appointment. She would also take me out shopping if I needed food or just to get out of the house. I don't think the social component of caregiving gets talked about enough. For a person being cared for, the importance of social interaction can't be overstated.
Additionally, the vulnerability that I felt needing care is something that I will never forget. It gets to your core. It changes you. All these years later, I still remember how that experience solidified the fragility of life itself for me. It also forced me to recognize, as a very independent person by nature, the strength in accepting help. Up to that point in my life, I prided myself on taking care of myself, all by myself, so learning to receive support for even the most basic life tasks became a lesson in grace and humility. And getting to the point of having gratitude for it all was definitely the master class.
What can help make this process of accepting care easier is a clear understanding of the relationship between the person needing care, and the caregiver, even if they are a family member. Also, that the care is delivered with dignity. One fundamental way that dignity can be achieved is by having the caregiver paid for their work. Now, I understand to some people, the idea of a family member being paid to care for a loved one is hard to understand or even offensive. Devotion to a loved one, in particular, is a natural and noble quality. An expected refrain is: "I love you. I would do anything for you." But here's why in the context of a long-term familial caregiving situation, that attitude and belief system can actually be harmful to the person needing care.
One of the main reasons I feel like the sacred relationship between my sister and I could survive our caregiving relationship was because she was being paid for the tasks she was doing for me. I qualified for a few hundred dollars a month, paid for through Washington's version of Home Health Services because I was a Medicaid recipient. It wasn't nearly enough, in my opinion, but at least it was something.
My 1,000 piece sunflower jigsaw puzzle.
As much as this may be uncomfortable to think about, at the end of the day, caregiving is a job—and when done well, it's damn hard work. Work that I feel is significantly undervalued in our society. I think it is both undervalued in financial support and compensation and undervalued in how it is regarded. This is similar to the idea that "women's work in the home," i.e., domestic work, isn't real work.
The other benefit of a caregiver being paid, ideally adequately, is the empowerment, autonomy, and dignity it gives the person needing care. I knew that even on days when my sister didn't want to necessarily take me to that third doctor's appointment, she had to because she was getting paid. Thankfully, I never had to remind her of that, but just having that leveling factor as part of our caregiving relationship made a big difference because it made me feel like less of a burden.
And there it is, that word: burden. I made it to the bottom quarter of this blog post before I wrote the word most damaging to the psyche of someone providing or receiving care, yet it is so quietly synonymous with it. No one, I don't care who you are, wants to be, or even be thought of as a burden. And equally, no one wants to be burdened upon. I think it is something that is hardwired into the human condition. I think one way you neutralize the power of that word is by acknowledging this aspect of caregiving.
Communication and clear expectations in a caregiving relationship can go a long way in maintaining boundaries and bolstering the agency and self-esteem of a person needing care. Additionally, (and this could be a whole separate post) making sure the caregiver is taking good care of themself. Fatigue, burnout, and overwhelm will most surely negatively impact the quality of their caregiving and maybe even permanently damage the relationship with the person they are caring for, especially if that is a family member. Lastly, as I've mentioned, making sure a caregiver is financially compensated for their work is very important in helping to limit the feeling of burden. As the old saying goes: money can't buy love, but it can help make things easier.
September is a tricky month for me. I always feel very reflective at this time of year about the health crisis I survived in my early adulthood. Some days I feel very grateful. Other days I feel kind of melancholy. Mostly though, is the hope that I never forget. To help with that, I have this 1,000 piece sunflower jigsaw puzzle that I keep hung in my home office to remind me of that time. My sister bought it for me to help pass the time when I was recovering at home. Getting up and doing that puzzle gave me so much purpose at a time I was so weak. I literally only had the energy to walk from my bedroom to the living room, spend hours on the puzzle while watching TV, and then repeat the same thing the next day. It reminds me that even at my most fragile, I still had the passion for making something beautiful.
I am sure I will require the need for caregiving again someday, maybe from a family member but probably from someone hired through an agency. Either way, I know my experience navigating a caregiving relationship at such a young age will only help make its return visit into my life easier. Sis, if you are reading this, I will be forever grateful for what you did for me during those years.
Editorial note: This is the first blog post in a three-part series about caregiving. You can read Part 2 HERE and Part 3 HERE