Seems like everyone is counting their steps these days as gizmos like Fitbit are all the rage. Because my daughter and I share a rare orthopedic disorder, Larsen Syndrome, we have many limitations in our upper and lower extremities that greatly impact our daily “steps.” Emily is a full time wheelchair user and I’m an almost-full time wheelchair user; I do walk some in the house with the aid of a walker. Though I try to avoid steps, I can do them with the assistance of the nearest available able-bodied person (usually my husband Marc) and a step cane (a specialty cane that cuts the height of a step in half to make it easier to go up or down). While everyone’s life can generally be boiled down to a series of daily steps to get tasks done, many of ours must be adapted to meet our unique needs. When our disability poses a challenge to us, we as family (definitely including my husband here) work together to find solutions – or what is popularly described today as “life hacks.” While Marc is the primary caregiver to meet some of our more difficult needs (i.e., foot care), both Emily and I have also found ways to help each other out on a daily basis. And, as both givers and receivers of care, we believe it is important to consider the needs of the “caregiver of the moment” and do whatever is possible to make things easier and more comfortable for them.
Over the years, we have discovered household tools and adaptive equipment to make all of our daily “steps” easier. I wrote recently on this site about some of my “life hacks for parenting with a disability.” Now I’d like to share some more. For example, before I get into bed, my husband first has to put on my night braces that I wear on my feet because I cannot reach the footstraps. To put them on in a way that is comfortable for me, he has to get on the floor. So, to make this less uncomfortable for him, we put a bath rug on the floor.
In the morning, once Marc takes the braces off, I head off to the shower. I can accomplish this by myself with the help of a “handi-hack.” When I need to shave my legs, I use a disposable razor that fits into a plastic extension handle. As an alternative, any plastic handle and duct tape will suffice; just make sure the razor handle is securely fastened to the handle to avoid injury. After all, what can’t be “hacked” with duct tape? I took the extra extension handle I purchased and taped it to the squeegee to make after shower clean up easier. Another great product for the shower are water-resistant command hooks. I use several of these so all my adaptive supplies are easily within reach. Also, even though for now I can still stand to shower, I keep the shower seat in place for extra safety.
Getting dressed after my shower involves another series of steps. For instance, when I feel like sleeping in and don’t have someone around to assist me, I use a plastic sock aid to put on my socks. After socks, I use a reaching stick to help with putting on my pants. I feel the reacher works better than a dressing stick because it gets a firmer grip on the pants. (I do use a dressing stick to push my socks and pants off at night.) Then comes the long-handled shoe horn to slip on my shoes. Here is another important tip: if you find a product that works best for your unique needs (in the bathroom or any other room), always try to have a spare around, especially with plastic products that can crack; this way you won’t be inconvenienced having to wait to shop for or mail-order a replacement.
My daughter and I can mostly accomplish dressing from the waist up independently but we still find we need to help each other out quite often. Some clothing fabrics are harder for Emily than others and, though we generally try to avoid the more challenging ones (knit fabric with some stretch are easier for us due to our elbow contractures), if there is a “must have” piece of clothing that is too difficult to don independently, we usually can help each other out. Same goes for our jewelry. And I personally have not worn a dress in over fifteen years to avoid the pantyhose struggle which, let’s be honest, can be a battle for many women, but when Emily wants to wear a dress, I help her put on her pantyhose. It’s quite a process, but we make it work.
Though I am more often receiving help than giving it (and I will even ‘fess up to some occasional laziness and take help when I don’t really need it) it is important to “step up” and find as many “life hacks” as you and/or your caregivers need for your unique situation.