Disability and Attendant Needs

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!