Last post Wed, Jul 09 2008 2:39 AM by Becky. 11 replies.
Some of you may say that i am just going through the motions and others may think differently. I know it will take time to adjust being in a wheelchair full time (been 18 days now) but i still feel very isolated.
Disaboom is great and its where i log on each day to give support, suggestions, guidance and get a little help myself.
In the UK (where i live) i get Disability Living Allowance which is currently £17 per week (about 34dollars). Social services do not provide domestic care, only personal care. So the choices for domestic care, which is what i need at the moment is either employ someone privately, you decide what they get paid (providing it is above the national minimum wage) or you hire agency staff at £11-£13per hour. Bearing in mind i only get £17 a week Disability allowance then basically you have not got a choice at all.
3 weeks ago i started employing my ex-boyfriend to work 3hours a weeks for me on Thursday afternoons. In two weeks time i increasing his work to two afternoons and paying him £30per week £6per hour. In one afternoon a week he takes me out down the town to do banking and get medication. By the time we get home he just has enought time to vacuum through and his time is up. This is the only time i go out in the week so i value this time. So we still got the washroom to clean, kitchen to clean, dusting, garden etc etc.
I feel like i am drowning, paying out money i have not got and still do not get all the jobs done. I have got a Mental Health consultant to see next friday and a physio the week after and i at present have no way of getting to the appointments. Someone suggested getting a taxi but what taxi driver will take your wheelchair in and out of the car, sit in the waiting room because i have an anxiety disorder and feel scared in waiting rooms and wait round to take you home again. My ex-boyfriend can only work afternoons, both appointments are in the mornings and they do not have afternoon surgeries.
Suggestions are welcome, i feel really desperate and tearful yet i can't even cry!!!!!!!
Chris
This may not lead anywhere, but it is a thought. You might want to contact the various churches or other faith groups in your area (Jewish, etc.), depending on choice, but not necessarily previous attendance, and see if anyone is willing to donate some time. I have found that some folks are willing to help on the transportation thing. Not too many will do housecleaning, but there are people who can sometimes be found for doctor's appointments, or a day out every two to three weeks.
Also, even though it is your outing time, it may be a better use of your paid helper to have him run the errands on his own as he will move faster, and then you can perhaps get donated "outings" from other sources. Just some thoughts on what has helped me over time in the past. Very very good luck on sorting this out. Do not despair, as you will work it out, in time, with determination. You do not have to be housebound if you don't want it, nor do you have to live in the dirt. You need to be creative. Also, a last thought, is that students sometimes will do some of these things as "service internships," and you can locate neighborhood secondary schools (I don't know what they are called in your country), or schools that train aides or social workers. Also, regarding the churches, the 'youth groups' may be a resource as well as the adult membership. Just some random thoughts . . . Regards, bonnie
Hi Chris,
Obviously I don't your exact circumstances but if you are in a wheelchair fulltime then you should be getting more than £17 per week DLA. At the very least you should be getting another £17.75 mobility component. Go straight to a Citizens Advice Bureau and find out about other allowances such as Invalidity Benefit you will entitled to if your condition is permanent. I'm in a wheelchair and receive about £109 DLA a week. GET Advice.
I know it varies from region to region but you should be able to get some form of domestic help. Again go to a CAB and find out.
Believe me when I say that being in a wheelchair is not the end of anything. It's just different.
Stephen
http://howtobeaninspiration.blogspot.com/
You don't say why you are in a wheelchair, but the fact that you are out and about in it after only 18 days astounds me! I have been in mine 10 months and only recently have felt brave enough to venture out when I didn't absolutely have to. Being a paraplegic I am not eligible for any home assistance either and so far friends have been very helpful, but the novelty is wearing off and I find myself faced with domestic distress. It is do-able. Its just a pain in the .... well it would be if I could feel down there. Crying will do you a world of good. Nothing like weeping and wailing to alleviate stress. Sure you will get a headache from it...and your eyes will swell up and stay shut, and your face might get blotchy...yes, you will look like crap... but you'll feel much better. So go ahead...
My heart is going out to you, but inevitably you will have to find the strength to find a volunteer service that enables you to stop paying out everything you have. Do you have any family that can give a couple of hours a week? Another suggestion would be to get in touch with all the foundations and start picking up the phone and make all the calls you can to get your story public.Networking with people will help you find a solution and I see that you already started by being on-line.Keep a positive attitude and remember life can be beautiful!xx
Dear Chris,
You have come to the right place! You have already gotten a wealth of ideas and information not to mention support. Things are still new for you, but in time I believe it will get better. I remember someone once said, You can't always get what you want, but if you try sometimes you just might get what you need.
Keep at it and keep reaching out. More will come to you. I kept reaching out and found an online church. Someone there introduced me to an online business that isn't too hard for me to do. That lead to an inexpensive telephone. Then I found Disaboom. It just keeps growing... Life is amazing even from a wheelchair, so keep the faith!
Got ya covered in my prayers,
pambe
hi chris, it is nice to meet you and welcome! i hope things turn for the better for you. hang in there!
Hi to everyone and thank you for your suggestions and support especially Bonnie
To update you, i have had a very pro-active day today. I have telephoned 5 different local churches and 8 charities. Some cannot help but others are going to get back to me and will do what they can.
My mum came over for 2hours earlier this evening to chat about my situation and she also did some cleaning. She said i must find regular help but she will try and come over with my dad to sort out my front and back gardens.
I also have registered today with telephone banking so that whilst i do have paid care here i can make the most of his time.
Thanks again and ............DISABOOM RULES!!!!!
That's wonderful Chris, I'm happy you've grabbed the bull by the horns and starting making calls. I'm rooting for you! I do my banking by computer as well, and yes, it relieves your caregivers of a lot of running around. I know I prefer mine to be cleaning here than standing in line at a bank!
When I went into my chair, my family bought me a "Grabber", a long-handled thing that extended my reach. With it I can do a lot of things to ease the caregivers time as well to be more productive elsewhere, such as picking up my clothes off the floor and putting them in the basket (I can't bend over) pick up newspapers, books, ect to put them where they belong, getting cups and even plates if I'm careful. It also helps me put away most of the dishes after Phillip has washed them, making me feel at least somewhat useful!
Hang in there! Looks like you are doing better!
Hey Chris! I am so proud of you. You are doing amazingly well for being in a chair for short of a time and having to deal with all of the things that go along with that. I know exactly how you feel though. You have to deal with a new disability and try to get the help you need at home. I'm from the US, so I can't help you much with suggestions of social organizations there. Bonnie's suggestions sounded very good though. Hang in there! Things will work out for you! Please keep us posted.
Becky
