Page 1 of 2 12 LastLast
Results 1 to 10 of 14

Thread: Any quads living alone

  1. #1

    Any quads living alone

    Vocational rehab is pushing me towards independent living. I live in a little group home right now. I was living alone on my parents property in a little house but I had a lot of problems with caregivers not showing up on weekends so there were many times when I had to contact my family to help me out. My sisters have both grown up and moved out so there's really no one around all the time to help me out if need be. Does anyone live in an assisted living apartment complex? I'm looking to go in that direction to. I've got one other problem to top things off though, I have epilepsy so I have to watch out for seizures. The place I live now only comes to help me when I call for it so I'm not sure the big difference. I'm working with an independent living advocate to really plan things out and make sure it's possible. I live in Peoria right now which is roughly 25 miles And 2 cities away from anything I like to do and of course being epileptic I can't drive so getting places can take forever. I've been learning to use public transportation But it's restricted to cities and I would have to transfer. It's 100? outside so transferring is not really an option.
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  2. #2
    Member
    Join Date
    May 2016
    Location
    Massachusetts island community
    Posts
    43
    Blog Entries
    4

    Reply to Rybread

    Hello, Rybread! I am new here. Though not a quad, the limitations I experience as a result of my multiple medical conditions put me in a similar boat. I have a seizure disorder as well, so I appreciate the transportation difficulties. I have a service dog who alerts me to my seizures; this has helped me feel much more confident when I go out. Although, caring for her is a full time job, I couldn't imagine my life without her.

    I currently live alone despite the difficulties. I use a power chair, but I also use my old manual chair with projection handrims inside as much as possible to maintain strength. I don't know what you use, but that's something to consider. Where I live, public transport is terrible. Some of the buses have the newer ramps and tie downs, but many have older, steeper, more dangerous ones. Plus, many drivers don't know how to hook a chair up; this is especially hard for me, because I have allodynia, so even a light touch hurts. This is foreign to most people and it can make transport difficult. Also, as I don't have many friends or family living close enough or who are not so busy they can help, I hesitate to go out in the winter. I'm sure you know how frustrating and hard it is getting stuck in the snow.

    I'll be honest, there are days I get SUPER frustrated. Recently, I've been dropping more things and clean up is so hard. It's dangerous for me to shower and I need more help, but I'm waiting for the system to clear everything, which I'm sure you know takes time. So, I'd make sure your PCA is all set and you should look for a back up or two. I've had my current aide cancel last minute a few times and the agency said they would try to find a replacement. Luckily, I found someone to at least do my shopping each time, but if I'd needed more help like showering or food prep, I don't know what I would have done...prepare for the worst!

    However, I really do relish the peace of living alone with my four legged pal.😁 I have a friend who works with quads around here and she's been called if there was a cancellation. I think it's par for the course and though not fun, it gets easier to handle. I know I'm not as phased if my aide has to cancel or shorten our time; I find ways to make it work. Ultimately, living alone has to be something you're comfortable doing. I would advise planning, and keep in mind there is always a time of adjustment.

    Would you mind sharing a little about your experience in a group home? There are a few around here. Though I relish my solitary life, I think of the future too. If a time comes I need more help than I can get at home, I don't want to end up someplace where clients are treated poorly or neglected or worse. Has your experience been positive?

  3. #3
    Oh yeah, I forgot about getting a service dog. That's something I'll definitely need to do. I keep just about everything I need strapped it down somehow. When I lived alone before I had two big cups of water on my desk that I could easily get to. Now, living in my assisted-living/group home, I don't really have a desk, there's not enough room in my room so I have my computer sitting on one of those tables that goes over the bed but it's lower down enough where I can see the computer no problem and have a little table for my mouse. I use voice recognition instead of typing, And I keep a metal Starbucks cupWith a strap on it that goes around my neck so I don't drop it. I spend a lot of time in a manual chair just because my room is kind of small and for some odd reason my back really hurts in my power chair but I think that has more to do with my back in my chair. Some days I'll just want to do something so I'll go up to the bus stop about a block away and catch the bus to Walmart and push around for a little bit.

    Living in my group home is okay but I pretty much lived alone for a long time and was set in the ways I do stuff so trying to adapt to the way they do stuff here without making too many comments can be kind of difficult. I don't get along with all the caregivers but I suppose that's just something that happens. There's a lot of head injuries where I live so it's not just spinal cord injuries. It's nice not to have to worry about having caregivers or getting my medications on time but it kind of sucks that everything has a set time so every morning they wake me up at 7 AM to give me some meds and we have a curfew of roughly 9 PM unless we call in advance. It's lonely and overcrowded at the same time. I have a very unique personality. Since I've moved here though, I've become a little short tempered and easily frustrated. Hopefully those will go away once I have more control over my life.
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  4. #4
    Member
    Join Date
    May 2016
    Location
    Massachusetts island community
    Posts
    43
    Blog Entries
    4

    Reply to Rybread

    Thanks for sharing! It sounds like we are similar. I too have a unique personality and not everyone appreciates it. I also have a very dry sense of humour that people who don't know me often misunderstand. That coupled with my sensory sensitivity and photophobia makes living with others difficult. I think that's why I prefer living alone. I would hate being woken up for meds, especially after a seizure; I get super tired and weak after mine and some days I just need to rest, even if it means I'm late taking my meds. If I'm late with my meds my pain is worse, but my body is grateful for the extra sleep. If I was woken up, it would be rough getting back to sleep and that puts me at risk for another seizure, plus I get cranky! 😠 (My seizures aren't controlled with meds. That's why I've got my service dog.)

    Funny, I take the bus into town to go to Wal-Mart too, just to get out. It can be a rough ride there, but luckily it's not far and it's smooth rolling once we arrive. 😁 I live right off a main road so I can't go for walks. My service dog and I walk around in circles in the parking lot of our housing complex; it's not great, but at least she can relieve herself. That's something to consider too. If you're planning to get a service dog, I recommend making sure there is at least an allotted place for them to go out near the door. My current landlord told me after we moved in that she doesn't want mine going on the lawn. So, even in the rain or snow, I've got to go down to the end of the drive to the short patch of mulch lining it to walk around in small circles until she goes there. Don't get me wrong, I'm grateful for this place, but when we came to view it I was relieved there was grass right near the front door so we could pop out and back in during storms; apparently not. 😞

    May I ask what your main reservations are about living alone again? It sounds like it would suit you. I hope the things I've brought up don't put you off. I love living alone, difficulties and all. Are you most worried about getting stuck without help, or having a seizure? It's just that from what I'm hearing, it sounds like life on your own could be a really good fit for you...

  5. #5
    I'm not really worried just trying to find a place to live in general. It's difficult to be able to afford a place in the area I'm looking to find maybe a roommate or something. Hopefully all will go well once I can get stuff situated when I find a place to live and I'm closer to friends and family
    C-5/6, 7-9-2000
    Scottsdale, AZ

    Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

  6. #6
    Member
    Join Date
    May 2016
    Location
    Massachusetts island community
    Posts
    43
    Blog Entries
    4
    Right on. I know it can take time to find the right fit. Good luck!!

  7. #7
    Hi Rye Bread. I am not living alone but have followed you on here. You are doing great regardless. We all have issues even with a pension and wife that works full time. It is lonely even if somebody is sitting right beside you. Sure I have it better. My depression and sleep issues make it so I feel barely here. I have not behaved well for along time just because I couldn't. But things always seem to look up. Even if it is a very long term process. I like your progress.
    Trying to keep on track period is hard.
    Good luck.
    A service dog would be great.

    I didn't read all your post as I should be sleeping and will go back to sleep in a while.

  8. #8
    I think being annoyed is part of the life. I have all kinds of things that can trigger frustration and upset me. You have to keep calm and watch your blood pressure. On of our pet dogs died in front of me the other day and that brought me be back to reality for a long time. It has sort of retaught me to not stew over little everyday reminders of our lives. I have never had a caregiver but my wife and family have been worried about me lately. I am sort of house bound because of pain.
    We can't let normal things be such a chore or task. I read the rest of the posts. It is good to be out and have a bit of pride in what we can do.
    We have one dog left and his needs surpass my excuses for not doing things. I Have a lot bowel issues and the chronic pain effects my brian a lot. No meds do much for me. Just normal ones for diabetes and some sleep aids.

  9. #9
    ptttht

  10. #10
    Member
    Join Date
    May 2016
    Location
    Massachusetts island community
    Posts
    43
    Blog Entries
    4

    Reply-stevegalliazzo

    Quote Originally Posted by stevegalliazzo View Post
    I think being annoyed is part of the life. I have all kinds of things that can trigger frustration and upset me. You have to keep calm and watch your blood pressure. On of our pet dogs died in front of me the other day and that brought me be back to reality for a long time. It has sort of retaught me to not stew over little everyday reminders of our lives. I have never had a caregiver but my wife and family have been worried about me lately. I am sort of house bound because of pain.
    We can't let normal things be such a chore or task. I read the rest of the posts. It is good to be out and have a bit of pride in what we can do.
    We have one dog left and his needs surpass my excuses for not doing things. I Have a lot bowel issues and the chronic pain effects my brian a lot. No meds do much for me. Just normal ones for diabetes and some sleep aids.
    I am so sorry to hear of your recent loss. Although my little one is only eight, I am reminded she will not be around forever. I hope you find some peace with the loss; I know no words make it better and we all grieve differently...You are in my thoughts.

    I have bowel issues and chronic pain as well, and my sleep issues are acting up recently too, mainly due to the pain. I have meds, but they don't help when things really flare up....I just try to find ways through it, sometimes I just scream.😲 My service dog does help; she is trained to comes over and lick my face until I'm calmer. It helps, but sometimes the pain is just too much. Lately, I watch Bob Ross paint on Amazon when I'm really struggling with pain. I find him calming and I learn a lot. It doesn't make the pain less, but it's a distraction. My father who also has similar health problems watches The Sopranos! 🔫 Everyone is different.

    My mantra this year has been acceptance, reminding me to enjoy all that I can. I won't lie: it's hard when bad days or life's hardness comes at me, but I feel connecting to others here helps. Does anything help you?

Similar Threads

  1. Quads living alone. What is your living arrangement?
    By CraigP in forum Housing and Home Design
    Replies: 19
    Last Post: 02-09-2016, 03:10 PM
  2. Quads Living unassisted
    By rollin' man in forum Caregiving
    Replies: 7
    Last Post: 08-20-2012, 12:44 PM
  3. Independent Living For Quads
    By aaronykc in forum Life
    Replies: 21
    Last Post: 03-30-2008, 11:08 PM
  4. Quads living by themselves
    By white00ls1 in forum Care
    Replies: 21
    Last Post: 03-02-2005, 05:37 AM
  5. Quads living alone?
    By dgrotz in forum Life
    Replies: 29
    Last Post: 10-31-2004, 10:15 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •