Caregivers and Companions, Part I

Due to the severity of my disability, I need assistance doing many tasks that most people take for granted, such as getting dressed and using the bathroom. At home, I have assistants who help me for several hours each day.  They take care of me, my home, and my animals. I’ve been hiring my own assistants since I was 18 years old. I’ve been lucky enough to have some amazing assistants over the years who have become close friends.


The relationship between a person with a disability and their personal assistant is something that’s difficult to explain unless you’ve lived it. Imagine having to trust someone, who’s a stranger at first, to help you with the most private matters you can think of.  Things your spouse may not even know about or see. That’s my reality, every day. Since I’ve been disabled since birth, I’m used to it, but sometimes there are moments where it suddenly hits me that this isn’t an experience most people have.  I don’t get the same amount of privacy as others. But, just because I need help with personal care, that doesn’t mean I don’t deserve privacy or dignity when discussing my needs with others. More on that in another blog.

Karin and Chrissy at the Bali Hai, Feb. 2014

Karin and Chrissy at the Bali Hai, Feb. 2014

My current main caregiver, Chrissy, is awesome. She has worked for me for over four years, which is practically an eternity in the world of personal care assistants. She has been there for me through some very difficult times. She was instrumental in helping me to escape from my abusive marriage, and her friendship and reliability has given me the strength and stability to rebuild my life. She has had her own struggles during those years too, and I’ve done my best to be there for her. She’s one of the most important people in my life, the person I depend on and trust every day.


As you may imagine, it’s difficult to find good employees. It’s not an easy job; assistants must work hard every day, and can’t call in sick or miss work without substantial advance notice. The pay isn’t the greatest, either, even for those not fully paid by state funding. I have many horror stories of people who stole from me, ruined things in my home, endangered my animals through stupidity or negligence, didn’t show up for work, or quit with no notice. I’m sure I’ll share those stories sometime. But in this blog I want to talk about the positive side. What makes a great assistant? What makes a great travel companion? If you’re disabled and need or want to travel with someone, how do you choose the right someone? The answers to these questions aren’t necessarily the same for everyone, but I can share a few tips that have worked for me.


The most important qualities in a personal care assistant are responsibility and stability.  It’s best to choose someone who demonstrates a history of being  responsible in situations that are long-term or complicated. I don’t consider medical training to be an important prerequisite at all. The help I need is mostly non-medical, and I can teach people what they need to learn. I can’t teach responsibility if someone hasn’t learned it by the time they come to work for me. So I look for people who have a history of caring for someone else who depended on them, whether that be a child, or older relative, or even an animal with special needs. I look for evidence that they were responsible not only when times were easy, but also when they were sick, or busy, or struggling with their own problems.


Stability is related to responsibility, but not exactly the same. I’ve had a few caregivers who had a good sense of responsibility, but weren’t able to be at their best because their life was in too much chaos. They were working three or more jobs, had problems in their personal life, or were so on the edge financially that they couldn’t maintain basic tools needed for reliability, like a car and cell phone. I feel terrible for them that the economy is bad, or that a problem in their personal life put them in that situation, but I have to make employment choices based on my needs. I’m not running a charity. I’m trying to live my life as fully and enjoyably as possible.


The next important qualification for a personal assistant, and especially for a travel companion, is common interests. I have to admit that I’m baffled by the many people with disabilities who hire a caregiver who barely speaks their language and comes from a very different world than their own.  When I travel with someone, whether at home or around the country, I want someone who can truly be a companion. Our personalities and interests need to match. If I love live music and museums, and my caregiver only likes sports and motorcycles, we’re not going to have much to talk about, and we won’t be able to agree on travel destinations. This is just as important if you’re traveling with a relative. It may be nice that Aunt Sally agreed to go with you, but if she wants to spend the whole time visiting quilting museums when you like to go adaptive skiing, it won’t be a good match.


That said, even if you are paying someone to go with you, don’t neglect their needs and interests. If they have a friend or relative in the area, make sure they have time to meet up. If they have a hobby or interest you don’t share, spend some time doing what they like to do. You might find you enjoy it too. Compromise is important when traveling! Remember you’re going to be spending all your time with this person for a week or more. They will be helping you with personal care, and since you’re not at home, some things may be more difficult or take longer.  You don’t want to feel like you’re ready to kill them by the end of the trip or vice versa. Choose someone who is easy-going and adaptable, who copes well with stress and doesn’t have a bad temper.


It won’t always be easy. It doesn’t matter if your travel companion is your best friend of 10 years, there will be moments when you get frustrated with each other. Use your best communication skills to get through those situations, and your relationship will be stronger for it.  It’s also important to spend time apart, to have your own space. Even if you need a lot of help as I do, there will be times that you can sit quietly and use the computer, while your companion goes to make phone calls or just relaxes with a book. You can meet a relative for dinner while your companion goes to meet their friend.  An hour or two a day makes a huge difference.


I’ve been lucky that the two travel companions I found to go with me since my divorce have been wonderful. Well, it was only a little bit of luck. I interviewed a lot of people and chose carefully. I also trusted Chrissy’s opinion, as she will sometimes see things that I don’t. It’s always a good idea to talk to a friend or another caregiver who isn’t going with you, but whose judgment you trust.


I’m happy to answer any questions regarding choosing a traveling assistant, and if you’ve done this I’d love to hear your stories in the comments.

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