Wheelchair Living!?

[757cutie]

Hello I've been in a wheelchair for 7yrs now...I hate the way some of my family treats me because of it. I'm 31 with a 2yr old son, living with my mother and she and other family members really treat me like i'm a 12 yr old lil girl and it is starting to really get to me. I understand they are as scared as I am at times but I don't let this wheelchair run my life like they think I should live life. I pretty much do everything for myself and my son...I would be completely independent if I had an accessible home....So basically I wanted to know is there anyone wheelchair bound that has their own home or apartment and if so how do you do living alone? Is it better for you? Is it stress free? I just want my mother and family to see that there are others in wheelchairs that live their own lives and that life isn't over just because I can't walk. I just need them to understand that.

[Windwalker]

I've been in a wheelchair for 3 years. I don't live alone but am "alone" for good parts of the day. I find that "accessibility" is an evolving endeavor. What is a suitable environment today, will not be in 3-6 months...unless your progression is at a crawl. Generally, these realizations come the hard way, (I.e 911 call, injury, etc.).

Watching and caring for a 2 yr. old I could not do. What are the chances of the child getting into a situation you could not help him with...they would seem high.
It's not just the loss of function...fatigue is a huge factor.

I'm going to assume your upper body is strong and you have good energy. How long will that be the case? I hope for a long time. IMO, living alone sounds like a bad idea.

[Jules A]

I love that you have such a positive attitude about your loss of mobility and think you must be an excellent example for your son.

Are you in a financial position to afford to hire the help you might need to assist you with your son's care, transportation and household duties?

As difficult as it might be I believe we all have to accept that adjustments will need to be made thanks to the limitations MS is imposing on us which for you might have include accepting and being thankful for the help offered by family members.

[divaonwheels]

My MS took the use of my legs from me literally overnight and I have been in a wheelchair for several years. I live alone....well with my little fur kids! I was lucky to be able to afford to make my house accessable. I also have pretty much full upper body strength which helps but I do use a power chair to avoid the wear and tear on my arms/shoulders. I do all my own cooking, cleaning, etc. I have someone come in every couple weeks who just does the up high dusting/etc that I can't do.

[aitch10]

As a partially disabled mom to two small kids, I gotta say nooooo way would I want to raise them on my own.

You asked if it's "stress free?" I don't think any parenting is stress free, but when my husband is out of town on business for a few days it is INCREDIBLY stressful.
Sure I can keep them fed, clean and entertained, but it is a ton of work to do by myself.

I can't imagine choosing to live that way on a permanent basis.

[kebsa]

i don't have a child to care for but i am completely chair bound using primarily an electric chair but can use a manual chair around the home with care. I live alone and have no family support. i have a visiting carer for one hour per day, she helps me shower and that is as much as anything a safety factor as i fell in the bathroom in the past while transfering and had a substantial injury as a result. She also helps me with some of the tasks that are harder to manage, one a fortnght she spends and extra hour to do house work such as the floors. My neighbour takes the bins out

i do my own shopping either in my electric chair or online in bad weather. I do most of my own cooking and meal prep but sometimes my carer will help me with this as my kitchen benches are a bit high for me. I can manage laundery by suing a front loader, i have a fold away clothes line that is lower than a standard clothes line and so is easier to manage or if i am having a rough patch i will use the dryer

i live in public housing and i am lucky that the place i have was built with me in mind under the guidance of an OT working with the architects! its not big, just 2 bedrooms. the kitchen benches were left at standard height as if they were at my height it would make it impossible to paid carers to be able to do kitchen tasks for me without OH&S issues- so i have one small piece of bench that is my height and the rest including sinks and stoves are standard height- that is frustrating but this was the safer choice for me

i can manage as i am if i were worse then i would need twice daily vistis from carers perhaps to get me in and out of bed. toileting is less of an issue as i have a catheter so do not have to transfer alot if you get the drift!

i need to be able to get out of the home as i live alone and would get a bit stir crazy if i did not get out but i would rather that than living with people who treated me as a child. there are details of good wheel chair etiquette- perhaps you could do a google search for some and print it off , leave it for the others to find as a hint! running a house alone from a chair with a young child would be a challenge but visiting care assistant or even nanny to hep with the chid would make it do able. it might be worth seeking advice from an OT, they do these kinds of assessments frequently to determine what level of support is needed- they'd soon let you know if it were not viable

[Marie12]

757cutie, Oh if we all had that minor problem

I am 57 years old, so I know I am not the expert. But my mom died in 1989, and I do still miss her. I was not wheelchair bound back then, and I am glad that she is in heaven, rather than dealing with me now.

Trust me, be thankful that you have your mom with you to help you. Yes, I'm sure she does treat you as if you don't have capabilities that you really do have.

But one of my major problems, is that I think I can do things that I don't have the strength, brain ability, or capacity to do. I have PPMS and don't have live in assistance.

Believe me, as my capabilities shrink, a nursing home looks better every day. My husband is away at working during the day, and if I get hungry, well many know how that goes.

We are getting a "shower with a seat" built near my bed. I didn't get a "tub with a seat," because I know I would likely never get up, and be sitting in the tub, the entire day.

Now I know, as soon as my hair is washed, I'll be back into bed. So, when I get hungry, well I haven't figured that out yet.

I am stuck financially in the middle, can't afford to have someone come in to help me, and family earns too much to be on Medicaid. This is an unfortunate situation for many. There has to be something that can be done for this group of "middle" class. It is like we are totally ignored, or don't exist?