As previously written in other posts, I have struggled this past year with my strength. Let me start with saying how thankful I am for the function that I have!! My spinal cord was injured at the C5-C7 level and I have SO many friends with that same level of injury that would LOVE to have the function that I have! So, I am not trying to sound pitiful so please don’t read it that way. However…for me, I can tell a major change in what I was able to do and how much effort it takes to do it now. I have lost some pretty major upper body strength and so it has affected my daily functions. Physically, I need some help in the mornings with my morning routines, and even more at bedtime because I am very tired. Home chores take me SO long and most of them I cannot even reach so my family takes care of most things. Since I am the manager of this home, and I need much more help physically from them, I want to make sure that they are not being dumped on too much.
So, how do you know if you need attendant help or not?
This is a very personal decision! Trust me on this…it has taken me a really long time to get to this place. Like, 9 years to be exact and I have been paralyzed 9 years. 🙂 I am just at a different place this past year with my needs being redefined, and I feel my family is also at a different place. I need more help with some of my care. My oldest daughter went to college, my son is working a job, my other son has become a hobby farmer and that will be extra time he will need. My life is very full and I love it, but it drains a lot of energy from me. So, I am personally at a new place and feel this is the time.
I have friends who need 100% physical care for dressing, bathrooming and showering and to be put in their chairs. Once in their chairs, they drive to work and work all day and then come home and have assistants to get them in bed. Others, have assistants who come to work with them and take care of their needs while there. Others only have assistants come in a couple times a week to help. It is very personal to your disability and needs. Only you know your needs.
Some questions to ask:
- Do you feel that things are piling up because you just don’t have the ability to keep it up? Is your house messy? Is your bedroom/personal area out of control? Does deep cleaning ever happen?
- Do the daily things that always need to happen (meal prep, light cleaning, personal hygiene or health care) get put off because it is so extremely difficult?
- Do you spend more time in bed because getting up and ready is so difficult?
- Do you eat well because meal prep is too difficult?
- Do you find yourself not ever wanting to leave home because of how hard it is to maneuver out in society alone?
- Do you have family members who are happy to help, or do you feel that you cannot ask them because they make you feel like a bother? (mine do not, but I have heard awful stories that really hurt my heart)
- Do you withhold asking for help simply because you don’t want to be a bother?
- If you plenty of money, do you feel you would hire someone to come help you?
If you answered yes to any of these, you probably need to think about trying to get some help! Depending on your disability, your income and your insurance, there should be something out there to help you find help. I live in SC and because I am on Medicaid (for the aged, blind or disabled), I was able to apply for the HASCI waiver. This is all new for me, but we are almost through the entire process and I just applied at the beginning of this year. Hopefully, I will have help within a couple more months!
If you have anything to add to this, please share in the comments for other readers!
4 thoughts on “Disability and Attendant Needs”
i wish you all the best, you seem to have a really good attitude which goes a long way. I am a T3 complete para and have a husband in the same situation. We are both over 30 years in chairs. So far we have been independent and all, but i can see the time coming when we need help. Ageing with SCI is very difficult. As we can only help each other in a limited way and don’t have family anywhere nearby we have started looking into how the home support system works up here in Delta, BC, Canada. All the best and thanks for sharing your story.
Wow, must be great to be in you situation!! I’m a C5 was injured when I was 20 and up until 3-4 years ago I only need care 2 times a day to get me out of bed and to get me into bed in the mornings and the evenings. During the day I was pretty much self sufficient and was able to feed myself and get myself drinks from the fridge and get my pre-made meals out of the fridge for dinner. I also was able to hold a mug (using the handle by slipping my hand through it) for drinking and was able to shave my own face and brush my teeth. Then one day it happened, I got a really annoying pressure sore right where my thigh and butt join. Well it landed me in hospital for 5 months and I had to go and get rid of my double bed and get a hospital style bed that have the head and feet raise up by the side controls, which meant I was no longer able to have my dog up on the bed which devastated me and was no longer able to sleep with my girlfriend which caused the rift in our relationship and she left me. Now because that spot is so bad and sensitive I can’t sit in my chair for more than 4 to 6 hours of the time whereas before I was sitting in my power chair anywhere from 10 to 12 hours a day and I never had pressure issues on my butt from being in my chair. Now unfortunately because of that ordeal I am unable to get into my chair and I am mostly bedridden. I also cannot afford to have workers come in three to four times a day to turn me or have a workers to come and get me in and out of bed during the day. And to top it all off I’ve lost a lot of stomach muscle because of this and I can barely fit in my chair and lost what little ability I had, and it is impossible to find a physiotherapist that is wheelchair accessible or that do home visits in my city and the worst part about it is I’m only 42 years old at the rate my health is going I’ll be amazed if I lost another 5 years.
So look into a waiver! They will pay for so many hours for you to get help. What state do you live in?
I have also went 9 years without help and can do so much on my own, but I am trying to be a good steward of that so it will last for me to get old!