Caregiver Perspective: Rules of Engagement

No, I’m not talking about the “take no prisoners” rules but instead am referring to rules associated with social engagements. This is the holiday season and there are family gatherings and parties at work or at friend’s home that are cherished events and a great way to keep those social connections. However, participating can be a challenge and a heartbreak for those who are mobility challenged and their caregivers. If you are having an event and want to invite someone who is a caregiver or gets around in a wheelchair or uses other equipment for stability, please consider the following:

Building Access:

  • We don’t do steps. Even a simple 1-2 inch elevation can create an obstacle. I have portable ramps I could bring if I know ahead of time they might be needed but look at your access area to see if there are any non-ramped elevations.
  • Door width. Lynn’s power-chair needs about a 25 inch width to allow access. At home, we have removed the doors from the frames but rooms like bathrooms often have a narrower door width. If that’s the case, I would need a private area we could access to do intermittent catheterization.
  • Remove a chair from the dining table and allow 25 inches between the other settings so he can access the table. If it’s a low table, he can’t get under it so he and I will be eating away from others. Some type of nearby flat surface could take care of holding our plates so my hands are free to feed him.
  • How much space is between furniture? Can he move around once he gets inside? Let us know where we should plan to go and if we can move furniture to get there.

Outside activity:

  • Usually can’t attend unless there are paved sidewalks and pathways. Any soft, wet ground or uneven landscape could cause the chair to tip, get stuck, breakdown, or get damaged. If it tipped over or threw him out, lots of damage could occur to him, the surroundings and the chair and getting a functional paraplegic off the ground is not a fun job without the proper tools to help.
  • He can’t hold an umbrella so he can’t be outside in drizzling rain or snow.
  • He doesn’t tolerate any extremes in heat or cold; well for that matter, anything other than a fairly neutral temperature is difficult because his body does not regulate its own temperature. We do that with either cold or hot fluid intake or changes in clothing so most of the time outside events are not possible.
  • Bathroom facilities: Unless there is a handicap bathroom that is unisex, we’re out of luck and it’s time to go home or try to use the van as a private bathroom after we have been somewhere for about an hour.

Risks and considerations:

  • Exposure to germs is very high risk especially exposure to colds, flu, and other respiratory conditions he can get just from breathing the same air. Please let us know if that applies to anyone in the area we will be so we can stay home. A cold is not a big deal to most people but for him, it takes weeks to recover.
  • Getting stuck. There are obstacles everywhere. Store aisles are often blocked with displays or other carts or people that prevent access. Please keep pathways clear.
  • Some people can be very rude and disrespectful implying that we should just stay home rather than cause others to be inconvenienced. Most of the time we just overlook this but it can be hurtful.
  • Even when we attend, after a polite greeting others find it difficult to come up with social chatter with him. He’s sitting at around 4 feet while they are talking over him or he can’t maneuver to where groups are located so he’s often left out of conversations. Remember to look down at him or sit to talk to him so he’s at eye-level.
  • The events are often late at night or early in the morning; neither of which work with his care schedule or need for rest. Mid-day activities that are after 11 a.m. but before 4 p.m. when his daily activity limit is met are best.
  • Limited view: Please don’t stand up if he’s sitting behind you. Lynn can’t see over you and he once again gets left out. Nothing’s worse than going to a concert and the crowd stands up the entire time. He sees nothing at all.

For the caregiver:

  • When I attend, I still have to care for Lynn. Offer to assist him while I get something to eat.
  • If I’m talking to someone and not right next to him, hand him what he needs rather than tracking me down.
  • Move things out of our way and offer to carry things for us so my hands are free to take care of what he needs or I don’t have to lift and move furniture as well as care for him.
  • Keep him occupied for a while by spending some time with him. I like to get away for a while myself at times.

While there is a lot to consider to be able to participate. Please don’t stop inviting us. We like to know we are wanted and if we can openly discuss these issues up front, who knows, we might even be able to participate just like everyone else.

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Comments

View Comments (6)
  • Marcie Kim
    3 years ago

    A friend once said to me she wondered why disabled families at Disney bother trying to vacation – and then she caught herself and was embarrassed she said that in front of me. But I get it. I explained that Disney is on a short list of places disabled people CAN vacation. (We are all unwitting ambassadors – educating the public.)

    I wonder if friends and family just feel overwhelmed when they try to take it all into consideration. My fear is they’ll stop inviting us because they think it’s too much trouble for them or us.

    I want to make it as easy as possible for us to interact with friends and family so we aren’t left out. I don’t ask for special accommodation, but I do plan ahead. Occasionally, I just offer to host at our house. There is effort in hosting but it’s easier than dealing with narrow doors into bathrooms, tying up the bathroom for an extended time, steps to enter the home, tight spaces, etc.

    I’m convinced people want to be kind and hospitable and good – they just don’t always know how – and they don’t know what to anticipate. We joined 50+ family members for Thanksgiving at a cousin’s house. It was packed but the crowd parted to allow my husband through when he moved from room to room. I navigated the buffet line for him and the family was happy to ensure he had a comfortable spot to eat. We had fun!

  • Donna Steigleder moderator author
    3 years ago

    I totally agree with you Kim. I think most people want to be helpful but just don’t know what to do. Thanks for sharing yoru story.

  • mario lobo
    3 years ago

    Donna,
    Embedded in your bullet item about bathroom requirements is a biggie, that many people, other than caregivers of course, don’t think about. “Unless there is a handicap bathroom that is unisex, we’re out of luck”
    Except for the perfectly set up bathroom at my house, that my wife is totally familiar with, she needs me to accompany her to the bathroom. If for example, a restaurant, has a ladies room with a wide door but it has multiple stalls, I can’t go accompany her inside, and it’s a no go, no pun intended. We try to locate all of the Dunkin Donuts on the route to and from our destination. Dunkin Donuts always seems to have single user wheelchair accessible bathrooms. When there aren’t any on the route or near our destination, we just don’t go to the event.
    When naive, well intentioned people suggest that we “go on vacation” I explain that a trip to the nearby Walmart needs to be a logistical marvel to work out right, let alone a long trip of any kind.
    Thanks for sharing your Rules of Engagement article!
    Mario

  • Donna Steigleder moderator author
    3 years ago

    I know exactly what you are saying. It works the same way for us. I can’t take Lynn into the lady’s room to cath him in case there are others there and I can’t go into the men’s room. If it’s a single stall lady’s room, we go in and I just lock the door but we’re out of luck if it has multiple stalls.

  • Theresa
    3 years ago

    This is a wonderful set of rules & much needed. I’m sure most folks are not aware of all of the many things you need to consider each time you venture out. This is a great message to get out to friends & family so they could know & prepare, in order to make your visit pleasant & enjoyable. Thanks for sharing your experience.

  • Donna Steigleder moderator author
    3 years ago

    Thanks Theresa. Glad you found it helpful.

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