Independence has a subjective meaning. It’s different for everyone and it changes over our lifespan. What independence means to me might not be exactly what it means to you, and what it meant for me ten years ago isn’t exactly the same for me as it is now.
Independence is not a one size fits all concept.
Many people with physical disabilities require home care to help them with daily living tasks. Depending on your level of disability, you might need only someone to help you with homemaking services. If you need more help with personal tasks like getting in or out of bed, bathing, dressing, or eating, you probably use Personal Care Attendants (PCAs). Individuals who use ventilators, like myself, have a need for a nurse twenty-four hours a day. Sometimes family or friends help us do the things we need to do as well.
I know how having home care probably appears to those who aren’t familiar with it. People likely think that we aren’t as independent or audacious as others because we have to rely on able bodied people for our daily needs.
To some extent, it’s true. Without my mom, a nurse, or PCA, I can’t get up in the morning. Maybe you can relate. That is definitely limiting on what I can do in my life if I can’t even get out of bed!
The thing I have realized as I have gotten older and my level of need has changed is that my independence is more of a mindset, not a complete physical state.
The reason I think of it in this context is when we have a disability, our entire life is different. It’s not something we can really change. We will need help, but needing that assistance doesn’t keep us from living. It also doesn’t forbid us from making our own decisions. I can be as audacious as I want to be. We just need other people to be our arms and legs. That’s the gist of home care.
We can only truly lose independence when our freedom of choice has been taken away. Home care allows us to keep our ability to make those choices.
That idea doesn’t only apply to my situation.
I’m not trying to paint a blissfully pretty picture of a life with home care services. There are definitely some negatives that go along with having staff of any kind. I have probably dealt with almost every issue in the book. The problems aren’t always brought about by a staff member, sometimes the complications come from the administrative side too. It can be stressful, but I have also been lucky to find some awesome PCAs and nurses who I have developed great relationships with and I know they are looking out for my best interests.
Part time home care.
Prior to 2008, I only relied on my mom or my PCAs for my activities of daily living. It was a fairly different situation than the one I am in now. I can’t fully express the contrast without telling you what kind of a person I am. I grew up as an only child, so I had a lot of alone time. I never needed a lot of people around me to be happy, and when being social I would much rather hang out with a small group or one on one. I like my space, I’ve always savored it.
When I only had PCAs, one of them would come and get me up in the morning, help me get ready, and then assist me in making breakfast or lunch, and aid me in cleaning my apartment. I would then be alone all afternoon. I had a snack and beverage set out where I could reach it; my cell phone and automatic door opener remote were also where I could reach them.
When supper time rolled around, I had another PCA shift. She would help me prepare food, perhaps do a load of laundry, assist me in using the bathroom, maybe help me get ready to go out for the night with friends. If I didn’t go out, I had another night time snack set out and made sure I had enough to drink until the bed shift when my PCA would return.
For my bed time shift, it wasn’t always just getting ready and going to sleep. Sometimes I would go grocery shopping at those late hours with my PCA. I always have been a night owl. And trust me, late at night is really the best time to do your shopping because you won’t have to fight any crowds! I also thought the older ladies working the overnight at Walmart were pretty fun to visit!
The time between my college graduation and moving out of my apartment were probably my most independent years. I didn’t have a roommate most of that time, and to be honest, it probably wasn’t the safest situation to be living on my own. The building I lived in was a subsidized building made for people with disabilities or the elderly. It was supposedly a secured building, but the security door was deactivated fairly often by other residents or didn’t work at all. There were also a couple of questionable tenants. What made things worse was the apartment management company was three hours away, and after awhile we didn’t have an onsite caretaker who would make repairs when needed.
When two of my closest friends were no longer living there, my anxiety began to increase. I had become scared to sleep there by myself at night. I didn’t lock my door because I was afraid there would be a fire and I would be lying helplessly in my bed, locked in my apartment. I was also a bit afraid someone would walk into my apartment at night. But my fear of a fire outweighed my fear of someone coming into my place.
No Show on Home Care
Another issue that caused me anxiety was there were times nobody showed up to help me in the mornings. Luckily, it didn’t happen often and I slept with my cell phone so I could call the home care office or someone else if I needed to. Some of these instances were because of scheduling errors and some were staff error. There were two times I had to yell for help because I didn’t have my phone in bed with me. Thank goodness for nice neighbors!
In 2008, I had moved into an all accessible duplex. I mostly lived alone during that time and continued with having my PCAs come in for three shifts per day. I did sleep with the doors locked this time; my staff and the home care agency had keys. My mom sometimes stayed overnights or weekends, but I was still anxious because I had come up with new things to worry about.
Even though I had new concerns, I loved living in a house. There was more space, a yard, a washer and dryer I didn’t have to share or pay to use, a garage, and it felt like a safer place to be. Despite my anxiety, I was happier. I still had my alone time and felt independent.
24 Hour Home Care
My situation changed drastically that summer. I went into respiratory arrest after contracting aspiration pneumonia and I spent nearly two months in the hospital. I left the hospital with a tube in my trachea and a noisy, new ventilator that I was to be hooked up to at night, or any time I felt my energy was being taxed. Along with those things, I was now in need of home care on a twenty-four hour basis.
I did not anticipate what it would be like to have a nurse around all the time, or at least when my mom wasn’t helping me. This situation is what eventually truly tested my stress level and view of what my life was going to turn out to be.
My main priority was to be able to come back and live in my own home again. While I was still in the hospital, the social worker there told us most new ventilator users go to a rehab facility first before returning home or going into some other living facility. Luckily, the home care provider I was with had nursing services, and it was just a matter of finding and training more staff.
I didn’t think about the fact I could pretty much wave goodbye to my hours of solitude.
When you go from being by yourself most of the time, to having someone in your space every hour of every day, it is enough to drive a person crazy! Not to mention it takes a toll on your interactions with other people, your social life, your state of happiness, and your ability to remain calm. It also takes a major hit on feelings of independence.
Initially, everything started off alright. I was happy to be home, able to sleep in my own bed, go outside, spend time with family and friends, hang out with my dog, eat good food…but a couple of months into my home recovery, my attitude sort of went down the toilet.
Hello 24 hour home care adjustment period.
I felt trapped. I was angry. I was stressed all the time.
Actually, let me be more blunt here. I was pissed off. I was pissed off nearly every day. I was pissed at life in general. I could say “pissed off” a hundred times and still not fully convey the feelings I was experiencing then.
I no longer got time to just be with my own thoughts in my environment. Introverts need their time to themselves to recharge and de-stress. If we don’t get it, we feel drained of energy and sometimes we get crabby. Also, I never see myself as a fragile person, so I hate being coddled like I’m chronically sick and always needing something. I’m not chronically sick. I was always being asked if I felt ok.
“Do you need to be suctioned?”
“Do you want a pill?”
“Do you want to lie down?”
“Do you want to be hooked up to the ventilator?”
Ugh. No. No. No. And no!
If I need something, I will ask. I know my body.
I became so annoyed with all of the questions I wanted to scream!
Not only did I feel like I lost independence, but I felt others were seeing me as not independent enough to even know or to ask when I needed something—as if my brain didn’t work properly to determine how I felt.
I understood it wasn’t the staff’s fault. They were just doing their jobs, and most of them weren’t yet familiar with me, my physical health, and how I wanted things done. Most ventilator users aren’t like me. I don’t rely on my machine to breathe, and I’m only on it at night. I’m not saying a hole in your neck isn’t something to be mindful of; it is a sign of a serious situation or condition. However, as long as you and your staff learn how to care for it and deal with it properly, and you’re medically stable, it’s not something that should cause people to fuss over you unnecessarily. It also shouldn’t totally destroy your independence.
I had to get comfortable with this new life and figure out how I was going to navigate it. I didn’t remain angry forever. Like I stated above, there was an adjustment period and I had to find a way to get through it. Lucky for me, I had my parents and some close friends I was able to talk to when I was upset. I also learned a few things along the way.
24 Hour Home Care Lessons
The first thing I learned: Communication is a key component in not feeling so robbed of my independence with home care.
For instance, making sure new home care staff knew I didn’t need to be interacted with like I was still a hospital patient is one thing that had to happen in order for me to feel not so smothered. The home setting is extremely different from a hospital setting. People shouldn’t be acting like nursing at a home is like nursing in an institution; it’s far from that. Home care is just that: care at home.
Another thing that is extremely vital is whoever works with you has to be a good fit. If you are going to be having a nurse or PCA help you, the person has to be someone you can get along with. Believe me, trying to force yourself to put up with a personality or habit of another person that gets on your nerves is a draining thing to do. It isn’t anyone’s fault; don’t feel guilty if it happens and you need to tell your home care agency it isn’t working out. Sometimes all it takes is to add another staff member to the mix to break up the schedule. Just like with family, a spouse, or a roommate, being around the same person all the time doesn’t always work well.
Also, when it’s your home, you need to make sure others know how you like your possessions cared for or where you want your things to go. Since they are working in your home, they need to respect your environment and personal belongings.
Most importantly, if there are problems with any staff member, do not hesitate to talk to your home care provider about it. If they are constantly late, aren’t very attentive to your needs, belittle you, or you suspect them of stealing, using drugs, or anything else that leads to you not feeling safe with them or feeling uncomfortable, don’t tolerate it. The longer you have home care, the more you will begin to trust your gut instincts early on as to whether a potential employee will work out or not.
Home Care 101: Don’t resort to thinking bad help is better than no help!
You deserve better than that. If you don’t communicate about this stuff, it leads to only more stress and larger problems.
You will feel more in control of your life when you make sure the staff you have are right for you. Having good nurses and PCAs to help you only increases your independence.
Since I have had home care, my daily routine isn’t much different from what it used to be prior to when I had my trachea tube put in. I still have assistance with the same things as before, there are just a few extra steps and pieces of equipment. The main difference is, there’s another person here all the time. So, on the positive side, I don’t have to wait for anyone to come for the next shift before I go to the store. I can eat whenever I want. I can do things around my house without having to wait for someone to come over. I don’t have to feel anxious when I go to sleep at night because there is another person here.
Without home care, I wouldn’t even be able to write this post about home care! Home care is not a luxury. It’s a necessity for many people with physical disabilities. When our government threatens budget cuts, I cringe knowing that home care is so important to people with physical disabilities in order to live independent lives.
I learned to assess my life through a different lens and conquer managing it. Do I still wish I had more privacy? Yes. Do I still get irritated and stressed? Occasionally. However, I haven’t lost my independence and audacity. As long as I can be free to make my own choices, my independence will never disappear.
Do you have home care services? How do you feel about them? Do you feel they reduce or enhance your independence?
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