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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 5 replies, 6 voices, and was last updated 2 months, 3 weeks ago by Halsey Blocher.

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      • #20584
        Brianna Albers
        Keymaster

        Happy Monday everyone! Hope you all had a great weekend.

        Alyssa’s latest column struck a chord with me. I’ve written several columns on caregivers myself, so I immediately understood the grief Alyssa mentions in “How a Cup of Tea Helps Me to Grieve the Absence of a Caregiver.” You tell yourself it’s just a job for the people taking care of you, but in my opinion, it’s next to impossible to keep from forming attachments yourself.

        It’s never easy losing a caregiver. I remember when my mom broke the news that I was losing my very first PCA. I broke down in tears, and it took me days to get over the initial shock. That was years ago, so I’ve more or less moved on, but there are still moments when I find myself missing her. We’ve kept in touch — I attended her baby shower a few weeks ago — but it’s not the same. It never will be.

        How do you deal with losing caregivers?

      • #20596
        Tracy Odell
        Participant

        I can relate. Sometimes it is very hard when people have to move on – and this has happened probably more than 100 times in my lifetime and is bound to happen a few more times in the course of my life.

        Growing up in an institution, I remember being devastated when one particular nurse who we all adored decided to leave. We knew we would never see her again – I’m not sure how we knew this, but we knew and we were right. I was only 7 years old but I decided that I would keep my emotional distance and not become attached to any of “them”. It was helpful and prevented a lot of heartbreak for the rest of the time I live there.

        As an adult living in the community, many attendants would come and go in my life. I would keep my relations with them friendly, but always held back emotionally. If I only saw the person when they are being paid to assist me, they were in one category. If we also did things on non-paid time, I would them consider them friends. This helped me to put the relationships into perspective.

        There are a lot of attendants in my life, because they all work shorts shifts and I see on average 7 different people every week. I’m friendly with everyone, and you do get to know people through their trials and tribulations and at times, them witnessing my own. This relationship is often more than just an attendant, but a form of friendship as well. Some people have coined the term “friend-tendent” (friend + attendant) to describe this.

        Sometimes I find it is hard when people have to move on. It’ feels like a betrayal. If I reserve some emotional attachment so it is not so bad when they do. I find since I have now been hiring my own attendants, many times we stay in touch after they moved on and so we are truly friends. When I see them they are not paid to be with me but simply hanging out or visiting. That’s how I make boundaries that lessen the heartbreak.

      • #20600
        DeAnn R
        Keymaster

        To be honest I probably wouldn’t recognize everyone who has been my caregiver at one time or another I’ve had so many.  I can’t say I’m actually “friends” with any of them.  More “friend-ish” I would say.  Even the ones I’ve had for years.  There are a select few that have left that I actually keep up with and keep up with me.  Maybe with a Christmas card or through Facebook.  That’s not to say I’m not sad to see them go.  I’ve just learned it’s usually inevitable.  I’m grateful for what they’ve done for me and wish them the best.  Sometimes I know I’ve made a lasting impression on them.  Sometimes they’ve made an impression on me.  Funny, it can be little things like now I spritz my hairbrush with water to prevent static, and I draw a line through the word of a crossword puzzle instead of circling it.

      • #20602
        Kevin Schaefer
        Keymaster

        I can definitely relate to this. There were a couple caregivers I had who I became good friends with, and it’s never easy when they leave. And I’d be lying if I said I wasn’t scared about the idea of my primary caregiver of five years leaving eventually. He’ll always be family, but I know that one day he will have to move on. It’s not something I look forward to, but I have to prepare myself.

        Agencies will tell you not to be friends with your caregivers, but sometimes it’s inevitable.

      • #20608
        Ryan Berhar
        Participant

        It’s not quite the same, but I had many different nurses when I was in school. Whether you’re close to them or not so much, it’s an enormous change that’s tough to deal with either way.

      • #20609
        Halsey Blocher
        Participant

        In all honestly, this one hit me really hard, both because it makes my heart hurt for Alyssa, and also because I’m going through this right now. My nurse of almost nine years is moving out of town in a few weeks. She is one of my closest friends so it’s going to be really hard to lose her. We’ll keep in touch, but it just isn’t the same. She’s been such a big part of our family and our lives for so long. Like Alyssa’s tea I already know there will be things that will remind me of her. The smell of oranges. Mispronounced words and bad jokes. The hand painted golf ball joystick she made for me. So yeah… This one feels very real for me. I’m glad Alyssa has been able to turn this sad memory into a healing way to remember her nurse. Hoping I get to that spot soon.

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