Old 01-12-2018, 01:36 PM #1 (permalink)
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Unhappy Hello

Hi there. I am a new caregiver to a young man with PLS. Just here to educate myself and learn how best to help him. He says he doesn't want pity but my heart breaks for him. I don't pity him....I just have grown to care about him. As a caregiver is this normal? I know it's a job but I feel like we're bonding. I came home from helping him today and just wept my heart out. Am I too sensitive for this job?
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Old 01-12-2018, 02:14 PM #2 (permalink)
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Default Re: Hello

Priya, as long as your natural empathy does not get in the way of your doing your best work, you're not "too sensitive." Stop by any time to post or read. Just to double-check, he has PLS and not ALS?

This is a new gig for you, so it's natural for you to take time to process the disease, and I would imagine you will stop weeping in the near future, recognizing that the best way to acknowledge the unfairness is to support the person who is living it, but also to live your own best life, without being overwhelmed by your job.

It sounds like this young man is lucky to have you, as the caregiver/patient bond can be very strong and positive; also, please encourage him to visit here on his own.

Best,
Laurie
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Old 01-12-2018, 08:27 PM #3 (permalink)
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Default Re: Hello

I don't have outside help yet, but I have friends who do and the importance of having the right helpers paramount. The intimacy of the relationship is such that you really need to not only have the required skill set, you also have to click with the patient and family. You become family at some level. Just make sure to remember to maintain your professional distance/formality in your relationship. You may become very close over time, but in the end you are doing a job.
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Old 01-12-2018, 08:48 PM #4 (permalink)
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Default Re: Hello

Priya, all of the caregivers that my husband Brian has had over the years are like part of our family. Some more than others, but that is normal. I love them all dearly for how they help us. Knowing you care that much warms my heart.

We have a friend who has PLS. The path is somewhat different for him, as he will not lose muscle, they just won’t work. Not that it makes it any easier for anyone, but the losses as far as I have been told will be much slower. He was DX just a few years after Brian, but only meds to use a WC at this time. Brian was DX in 07.

Best to you as you care for this young man,

Sue
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