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  • Staying at Home Alone When You Have SMA

    Posted by kevin-schaefer on May 13, 2019 at 7:00 am

    Hey everyone, hope you all had a great weekend!

    My parents and I were in Kentucky last week for a short vacation, which turned into quite a fiasco. I’ll write more about it here, and in my column, but let’s just say that it started with the hotel we were supposed to stay in screwing up our reservation and having no accessible rooms available. We ended up having to go to two more hotels before we found one with an available roll-in-shower. That was just day one.

    Anyhow, we’re home now, and I was able to read a few books on the trip. One was Shane Burcaw’s latest book, “Strangers Assume My Girlfriend Is My Nurse” This is sort of a sequel to his 2014 memoir “Laughing At My Nightmare,” but it’s more a collection of essays and stories. I highly recommend it, and I’ll start a discussion on it in the disability in media forum soon.

    One section of the book addresses the topic of staying home alone when you have SMA (or a similar disability). Shane writes about how he didn’t have a problem with this for a long time, until a particular incident made him paranoid about it. I’d rather not spoil this incident for you, as you should read the book for yourself. The point is that it made him anxious about staying home alone for a while, and it took him some time to get over it.

    It got me thinking about this subject. Personally, I like it when I get the house to myself for a few hours. My Mom usually goes out with her friends once a week or so, and if I don’t have any plans I just chill out at the house by myself. I keep my phone on my tray and within reach, use Alexa technology to control my music and tv, and I have to keep my right hand on my joystick. If there’s an emergency, I have a button that opens my front door, and I can also call my neighbors. Plus, my JACO arm enables me to eat and drink without anyone’s help. Granted, I can’t stay by myself all day, but I can do a few hours without any issues.

    I know this is different for everyone here, and some people need people with them around-the-clock. That’s ok, but I was just curious about this topic. Do you have a setup for when you’re alone? Do you have any precautions if there’s an emergency?

    halsey-blocher replied 5 years, 1 month ago 5 Members · 13 Replies
  • 13 Replies
  • tracy-odell

    May 13, 2019 at 9:13 am

    I have SMA type II and just retired last year at age 60! (Quite a milestone when your parents were told you would not live past the age of 12!) My husband will be working for a few years, still, and I share the paranoia about being home alone for hours on end.

    If my arm “falls” off my arm last, I am unable to reach a switch to change my position. I always keep a phone within reach after one of my attendants had a stroke in the middle of my booking before passing me my phone. What are the chances of that?! The older I get, the more experience I have with things that can go wrong, so I must admit I’m not entirely comfortable being by myself.

    I like having someone available during the day, but not always being actively involved in doing some activity where I am required to direct my care. It is nice to have quiet time to do my own thing. Ideally, there would be somebody on-call in case I need them.

    In Ontario, we have a program called “Direct Funding” by which you can hire your own attendants and the cost for this is covered under the Ministry of Health. It also includes wraparound expenses like having a bookkeeper to help prepare financial reports. Direct Funding provides about 3-6 hours per day of service on average, so that doesn’t go very far if you are home all day.

    After I retired, I received some additional funding to provide some extended hours in the middle of the day, which leaves a three-hour gap in the morning and a three-hour gap in the afternoon.

    My older sister has the same disability and she has just retired. It is our plan to move into a building where we will each have our own condo, but can pool our direct funding to have additional coverage during the daytime hours. We will see how this works out!

    • kevin-schaefer

      May 13, 2019 at 9:40 am

      Congrats on retiring Tracy! It sounds like you have some exciting things going on.

      That sounds like a great setup. Like you, I use a combination of government services and money out of my pocket to pay for my caregivers. Though from what you’ve said, the healthcare system is better setup in Canada than in America.

      I understand the anxieties that come with staying home alone. Even when the slightest thing slips, it can leave you stuck. I hope it works out with you and your sister though. Keep us updated.

    • ryan-berhar

      May 13, 2019 at 6:15 pm

      Hey Tracy, you mentioned that you like to have someone available, but not always actively involved. This is exactly what I want, but it seems next to impossible to achieve. Basically, I don’t require 24/7 care, but I need someone available 24/7, if that makes sense. I don’t want someone shadowing me all day, because I really cherish my time alone. But, at the same time, it’s not like a caregiver will just appear out of thin air when I need them. Can you describe more how you manage this? Anyone else feel free to comment as well.

  • ryan-berhar

    May 13, 2019 at 6:03 pm

    This is a gray area for me. Generally, I’m comfortable being alone for say a couple hours. The worst that could happen is my left thumb might slip off my joystick, rendering me totally immobile. This has never really happened when I’m alone. It would suck, but it’s not like I’m in any danger, barring a fire or something. My mom and grandmother (my primary caregivers) both take walks every day at the butte (a big hill in the middle of town), and this is when the issue usually arises. The walk takes 45 minutes to an hour. My gma is uncomfortable leaving me alone for that amount of time, but my grandfather is often available to stay with me. My mom, on the other hand, is more comfortable leaving me home to go on her walk. So it really just depends on the comfort level of my caregiver.

    • kevin-schaefer

      May 15, 2019 at 12:12 pm

      It definitely depends on how comfortable the caregiver is with it. Shane writes about this in his book. My Mom is really chill about letting me stay home alone, especially since I’m able to call through my Alexa device if there’s an emergency. But yeah, my Dad is a little more hesitant.

  • halsey-blocher

    May 13, 2019 at 9:26 pm

    Unlike you guys, I have to have someone close by 24/7. I’m rarely alone for longer than it takes for caregivers to use the bathroom. My caregivers are never farther than the next room so that I can always get help if I need them. I also keep my phone where I can reach it in case of an emergency like what Tracy mentioned. And if I can’t reach my phone I would use Alexa to make an emergency call. I’m planning to use an echo dot as a sort of portable emergency “button.”

    • kevin-schaefer

      May 15, 2019 at 12:15 pm

      Thanks for sharing Halsey. Yeah, you do what works for you. It helps to when you have a good relationship with your caregivers, and you’re really comfortable with them.

      • halsey-blocher

        May 15, 2019 at 9:12 pm

        Agreed. I’m very fortunate to be very close to my family as well as my nurses.

  • deann-r

    May 14, 2019 at 11:26 am

    Personally I love being alone. Because I have a schedule I’m confident if I get stranded it’ll only be temporary. With that being said I have had my share of times where I have actually been stranded. The longest was maybe 6 hours because it was shortly after my PCA left and I couldn’t reach my phone. Alexa wasn’t in existence yet. I fatefully attempted to open a door and as it opened hit my joystick pushing it out of reach and pinning my arm on the armrest. Thankfully the TV in the other room was on, even if an hour was filled with Judge Judy. Of course I take the steps as mentioned above to minimize the chances of that happening ever again. Kind of like Halsey’s idea of a portable Dot, but they do have to be plugged in, right? I almost have one version in every room of the house though. I do have one of those alert call buttons, but I think they’re kind of stupid because you have to push the button which in several of my stranded incidents couldn’t have happened anyway.

    I have more anxiety of getting stranded when we travel (hotel room doors are heavy) or I’m at appointments. Since I can’t open doors I’m always worried I’ll get stuck and who knows how long it’ll take for someone to find me. Again it can only be temporary, but still can be unnerving. It’s happened twice in elevators where minutes seem like hours.

  • tracy-odell

    May 15, 2019 at 7:49 am

    I just realized I wrote, “If my arm “falls” off my arm last” instead of “If my arm “falls” off my armrest” (thanks Dragon) but I’m glad you realized what I meant. In response to Ryan’s question about how I manage having a caregiver on-call:

    In Canada, we use the term “attendant” rather than caregiver consistent with our history of advocating for services in the community that were separate and distinct from health services. In the late 1970s, we were able to persuade the Ontario government to put community-based support services in place for people with physical disabilities who could direct their own services. (Not medicalized, so not hospital controlled).

    Other provinces do things their own way, but in Ontario today, these services have evolved into several types of delivery.  I use one type called “direct funding” which allows me to hire my own attendants. I have to do all the administration relating to that, but it also includes being able to set what their job description looks like when working for me. For this reason, we are referred to as “self-managers.”

    Some people make on-call arrangements with their attendants that works for them. Others might have a live-in arrangement.

    All my attendants live out and work for discrete periods of time on a schedule I set for myself. Each of us negotiates our funding based on need. Typically, a self-manager might have between one and four hours of service each day. If a person is on a ventilator, is unable to move their hands independently, then quite a bit of additional time can be negotiated, up to 24 hours if living alone.

    In my case, I have scheduled my attendants for four times per day – getting up, midday including lunch, dinner and bedtime. This gives me 8.5 hours per day which is incredibly generous, even by Ontario’s standards. Three nights a week I have someone stay overnight so my husband can catch up on his sleep because I do need assistance during the night, now.

    During the times where my attendants are here, I am actively involved with directing my services, overseeing things they might be doing at my home, maybe going out to appointments or to shop, etc. if I just need housekeeping or some cooking done, I might be able to do my own thing if they are comfortable to do these tasks without me by their side.

    After I move into the same building as my sister next year, we plan to pool our resources and hire attendants who will work with both of us. That will give us the benefit of having someone around almost all the time on-call but at the same time each of us having times where we can be doing our own thing.

    My sister and I have yet to work out details of how this might work. So if we are getting up at the same time, for instance, we would have two people working at the same time (one for each of us). But once we were up and about, we could share service with one person, making arrangements for a second attendant if one of us had an appointment elsewhere. We think this may give us more flexibility and make it easier to find attendants since the hours will be more attractive.

    • ryan-berhar

      May 15, 2019 at 7:14 pm

      Thanks for sharing. It sounds like a great system. From what I’m gathering, it sounds like you’re a bit stronger than me, and it also sounds like the disability services are better there. I’m currently looking into options. I’ll keep everyone updated.

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