Re: Feeling Guilty
There was a really good thread on this a couple years ago. I'm going to cheat and use my response I wrote then I also included the link to it, there was some really good discussion in it. Although I'm sure there are lots of people in here today that want to share their feelings with you because they are experiencing the same things as you are. You have NO reason to feel guilty it is very normal and I think we all have/had those feelings at one point or another..
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-----What a roller coaster thread. While I'm sure every caregiver will readily acknowledge they are in a better position than the person with als, that doesn't mean being a caregiver isn't the hardest jobs they will ever have. It also comes with a range of emotions that are just indescribable. It is heartbreaking to watch a person you love with all your heart deteriorate in front of your eyes.
I was my mother's primary caregiver. I have never considered or tried to portray myself as a martyr, I have however shared with close friends and my sister feelings of resentment that built up over time. Those feelings were immediately followed by guilt. I knew my mom wasn't intentionally causing me such heartache. I knew mom NEVER wanted to become a burden. I use the word burden but I didn't always feel burdeoned, but there were days when I hadn't had a break for over a week and had not slept more than 45 consecutive minutes where sleep deprivation takes over and you feel so worn out that those types of feelings are just natural.
I would say overwhelmed is probably a much better description than burdened. I am not a nurse, I have no training in health care and there were many times when it got just plain scary for me. I laid in bed at night listening to my mom choke and gasp and moan. I would run down stairs to her aid 10-20 times every night sometimes for no reason, sometimes to find her genuinely choking or unable to breathe. The range of emotions from seeing someone you love in that state are indescribable. The feeling of helplessness after trying everything you know how is just plain scary.
Feeling resentment even for a brief moment does not mean we don't love our PALS, does not mean our hearts don't break for what they are going through, and certainly doesn't mean we lose sight of how hard it must be for them.
Burden and resentment are two words that I was scared to say out loud because they sounded so awful. They are things I felt but only for short periods. If a PALS feels insulted or irritated by them let me tell you a few more words. Love, commitment, dedication, and did I mention love? Because those are the words and feelings that I felt most often and the feelings I have now that she has passed.
Original Thread:
https://www.alsforums.com/forum/als-caregiver-support/7857-caregiver-resentment.html