Caregivers For Periodic Paralysis

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Having a rare disease like Periodic Paralysis can sometimes be difficult; especially alone. That is why it is really critical to have caregivers, family and friends around for physical and emotional support.

In this episode of ‘You’re Not Alone,’ a variety of patients with periodic paralysis talk about their caregivers and how they help them manage their day to day lives.

How Can I Find A Caregiver?

If you would like to explore your options to hire a caregiver, here are a few places to look: 

“Finding a caregiver is not the easiest option to do,” says Linda, who prefers to hire through Craigslist. She has some caregiver hiring tips:

Think about whether you want to use an agency or hire independently.

“Agencies are good if you are looking for a temporary situation, but are very expensive for full-time live-in care.”

Consider your income situation.

“People need to work in tandem with their doctor, as those with lower incomes qualify for other benefits, especially through their individual state.” 

Write a detailed job description that clearly explains what you want in a caregiver.

“You need to be very specific when hiring. … I have posted an extensive ‘needs’ list.”

It may help to advertise beyond your local area.

“I advertise in states other than the one I live in. Especially good are states where you know there is high unemployment.”

Keep yourself safe when meeting someone for first time.

“Background checks are mandatory for any hire, and they know this up front. I meet them in person at a neutral location, and always with someone else there with me.”

Personality fit is important.

“If this person is going to live in your house, make sure you also like them as an individual.”

Have a probationary period and a notice period.

“All of my caregivers are hired on a 30-day probationary period. I prefer not to sign a contract, for my benefit and theirs. I do ask for 30-day notice of them leaving, unless there are circumstances that intervene making it impossible for them to work.” 

Be a friend, not just an employer!

“There are so many really good people available and looking for a place to live. Being a friend as well as an employer goes miles.”

What If The Caregiver Is A Bad Fit?

One reason that some people are hesitant about hiring a caregiver is the fear of having a caregiver who isn’t a good fit. If you’re feeling this way, it’s understandable. Hiring a caregiver requires a great deal of trust. You wouldn’t want to have a caregiver who doesn’t listen carefully to you and isn’t willing to go the extra mile to meet your needs.

The very first thing to make sure of is that a thorough background check is performed before you hire someone. However, even a caregiver with a clean background check still may not be a good fit. Maybe they don’t show up on time consistently, or maybe they aren’t very attentive. This article from explains how to handle the situation when a caregiver does not provide quality service. It’s best to have clear and honest communication with the caregiver about what they can do to improve. If things still don’t get better, you will need to hire a different caregiver who can give you the quality care you deserve.

Don’t let the fear of getting a less-than-stellar caregiver stop you from looking for a caregiver in the first place. If you don’t try to hire a caregiver, you’ll miss out on finding wonderful people who make a huge positive difference in your life! Linda puts it this way: “There are always going to be bad ‘fits’ when hiring. Don’t take it personally. Get out of the situation and move on. There are people who will become part of your family!”

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