Wheelchair Accessible Lifestyle

The topic of caregiving is a very tricky one to navigate

I preface this blog by stating it is written from my personal and dozens of other spinal cord injury folk’s perspectives with respect to our experiences.  As a quadriplegic, paralyzed from the chest down, I am fully dependent on another human being for my daily care from bathing, bowel program, catheter changing, dressing, cooking, etc. It can be tremendously challenging to have to rely on another human being to take care of you on a daily basis. But unbelievably heartening to know that there are people out there who dedicate their lives to wanting to help others.

This is an extremely sensitive topic for me and can be challenging for me to even write about.

After many conversations with fellow quadriplegics, we generally agree that for every 10 caregivers there may be 1 or 2 that are pretty phenomenal. Those are not great odds, but when you do find a great one, for God sake, don’t let them go!  When you find a caregiver it can take anywhere from several weeks to a month for them to learn your routine.

Since every spinal cord injury is different we all have a different way of doing things. So it can be pretty challenging if you have the expectation that you are going to find a caregiver who has experience with taking care of folks who are paralyzed. You have to be willing to teach, be very patient, kind, and willing to adapt certain aspects of your life.

Unfortunately, there are so many folks in the caregiving world that probably should not be caregivers.

On the flipside, I’m sure there are many quadriplegics who are not great patients themselves. But it’s not like we can do much about being paralyzed :-).  I am in a little bit of a different situation because I work with live-in caregivers who live with me 24/7. I split up the shifts where I have one caregiver work two days a week and the other one work five days a week. When you live in with someone it is a completely different ball game. There has to be a little bit more understanding than someone who just comes in for eight hours to take care of you because you have two personalities living in the household all the time. There is virtually no privacy and you have to find a way to live in harmony with them.

Another huge challenge for many folks, including myself, is that fine line of being taken advantage of.

There has to be a bond with someone who is taking care of you so intimately. But sometimes kindness and understanding can result in the patient being taken advantage of. There’s an age-old expression “you give someone an inch, and they take a mile.” This is applied not for all caregivers and I don’t want to knock the fabulous caregivers who are out there doing a tremendous job. But there are very many caregivers who, after a while, start to take advantage of the patient. On many of my spinal cord injury Facebook groups, I asked other folks to tell me great stories and horrible stories of experiences with their caregivers. I’m saddened to say that 80% of the stories were pretty awful.

I’m not sure if this is an issue with our system. The fact that health insurance won’t financially assist more with caregiving, but we are putting our lives in someone else’s hands. And that can be pretty terrifying when they don’t have your best interests at heart.

When they are great, again, you are very very lucky! When they are not great, you can literally be afraid to wake up in the morning.

I am extremely vigilant with my healthcare, probably neurotic, but with all of my medical challenges, I have to be. I need to check my skin multiple times a day. Make sure my feet don’t fall off their foot plates, make sure there no wrinkles in my clothes, etc. When you have someone who truly loves you like a parent, family member or friend who helps take care of you, there is a vested interest for them to really have your well-being at heart.

When you’re working with a caregiver you don’t know very well yet or they are not very attentive or it is just a job for them, it can be terrifying to trust that someone to have your back.

Don’t get me wrong, I fully believe you need to be your own advocate for your healthcare first and foremost. You need to teach properly and double check, and then double check again. I was raised with a great philosophy from my dad where he said “Trust, but verify.” This pretty much holds true with everything in my life today. Sadly, there are so many caregivers out there who are just doing this for a job and don’t have that kind heart to help you live a happy life.

I have had a handful of phenomenal caregivers whom I’ve had for years, but unfortunately, I moved countries and I had to let them go. It usually takes me about five or six caregivers before I find one who really sticks around. This can be exhausting, frustrating, and disheartening over time. I am so fortunate to have a superstar and superhero SCI mother who helps me train my caregivers. I cannot even imagine what I will do without her one day.

Many folks don’t have people to help them train and have to do it all on their own.

This can be infinitely more challenging. And sometimes what happens, from what other folks tell me, is that they are so scared to constantly go through. They try new caregivers but end up staying with ones who only take mediocre care of them. This makes me so sad because waking up every day and not knowing if you are going to be cared for correctly with someone who you don’t trust or feel scared with is the worst feeling in the world. I’ve had this feeling too and I have actually worked with caregivers longer than I should have because I felt like I was being held emotionally hostage.

It is much easier to let a caregiver go if they do something physically wrong to you. But if they hold you emotionally hostage such as unloading their personal life on you, having 1 million emergencies where they don’t show up for work, etc. it can put you in a horrible spot.

What I don’t think there is any excuse for at all is when you have a caregiver not show up for work, not call, and leave you hanging with no word at all.

Even if you have a patient who is rude, a bad employer, a nightmare to work with, etc., there is absolutely NO EXCUSE to at least give that patient a few days or a week’s notice that they will not be coming in to work with you. It is dangerous and actually illegal to just not show up and leave someone who cannot care for themselves alone. I literally cannot count the number of times this has happened to people I know … myself included. I had one caregiver start and on her first night, she left in the middle of the night with no word. Who the hell does that? You are not going to like every caregiver you hire and a caregiver may not like you, but there is something called common decency that seems to be lacking way too often.

Another challenge many of us face is whether to hire a caregiver privately through Craigslist or some other online outlet or use agency.

Personally, I cannot afford an agency and they generally do not have folks who have a vested interest in caring long-term for a patient.

The handful of caregivers I did have that were phenomenal, THANK YOU! You made me feel safe, secure, and happy. You know who you are and I will never forget you.

With that said,  here are just a few examples of things that  have happened to me over the years:

1. A Caregiver stole my alcohol and was drinking in her room for months until we caught her
2. A caregiver drank my alcohol and was caught red-handed when I came back one night
3. A caregiver took prescription medication, I thought she had a stroke, and she could not walk… It was her second day on the job
4. I had a caregiver who came in one morning and I thought she was drunk or on drugs because she proceeded to try and pull my catheter out of my body and rolled me off my bed
5. Multiple caregivers held me emotionally hostage or left suddenly in the middle of the day to deal with God knows what or would cry to me to me with so many issues on a regular basis
6. A caregiver snuck out multiple times in the middle of the night leaving me alone to go visit her boyfriend
7. Several caregivers left in the middle of the day with no word. If they did not like to work for me for whatever reason they should have called, no excuse!
8. A caregiver demanded a month severance pay if I died
9. There’s an instance a caregiver stole lots of money for me
10. Had a  caregiver who broke my ankle because she was not paying attention to my feet

These are just a few examples of things that happened to me. I then reached out to my fellow spinal cord injury folks and here are some other stories that were conveyed to me that are probably worse than mine:

1. A caregiver slept with a woman’s husband and they both left her
2. A caregiver left in the middle of the day to go pick up her boyfriend from jail and brought him back to the house where she was working… Consequently, the boyfriend had been in jail for child molestation and there were children in the house
3. A caregiver left a high-level quadriplegic alone for hours in their own feces and urine resulting in pressure sores for that patient
4. A caregiver demanded more and more food money. This money was then spent to buy expensive food and resold later only to pocket the cash
5. A caregiver was giving a high-level quad a shower who did not feel temperature and the water were scalding hot. This resulted in blisters all over the poor guy’s body
6. Multiple caregivers brought their boyfriends into homes of patients and did not ask. They just declared that they were going to be bringing people over

There are also quite a few funnies for people I interviewed, who I ultimately did not hire, but are worth mentioning

• I had a Brazilian woman who was eight months pregnant tell me that she would like to move in with me, have the baby, and she could take care of a newborn plus a quadriplegic. I thought she was joking, she wasn’t 🙂
• A random husband-and-wife couple said they lost their house and didn’t have anywhere to live. They informed me they would be kind enough to both move into my house and tag team take care of me. They had no caregiving experience mind you 🙂
• A woman with four children wanted to move into my two-bedroom apartment and take care of me. But only work 8 hours a day while living in my house because she needed to take care of her kids the other hours.

CONCLUSION

There are always bad apples within each bunch. But what makes caregiving unique is that when you have several bad experiences. It can be really hard to trust a caregiver who is great in the beginning. It’s not like a business where if something doesn’t work out then the employer can go find a new employee. It doesn’t affect their personal life.

With caregiving, it’s extremely personal when someone is actually caring for your physical well-being. When hiring someone new, it’s hard to not project fear if trust was violated. This is human nature. Fear does not just go away because you hire someone new even though the new person had nothing to do with your prior experience. It’s unfortunate, but the reality many of us have to deal with.

It takes me at least six months to feel comfortable with somebody. I just never know if somebody is going to leave at the drop of a hat, hurt me, become complacent after a few months and try to take advantage or God knows what else. And it is my biggest challenge being paralyzed. I wish I could say “I don’t live in fear of caregiving” but I do. Find it to be an easy part being in a wheelchair 🙂

I will say talking with other spinal cord injury folks who deal with similar situations and experiences helps my sanity and mental state of being. I used to think I was the only one these things happen to. But there is some sort of twisted comfort in knowing that I am not alone. What do I wish for the future? That we all find phenomenal caregivers … Hope is what keeps me going in my darkest hours.

Resources:

CDC Caregiver Tips

Caregiver Interview Form

United Spinal Caregiver Resources

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