When my son was diagnosed with autism 15 years ago, we were thrust into a whole new world that required learning about social stories, visual schedules, IEPs, and signs of seizure activity. We had to purchase things like water-proof mattress pads as he wet the bed often and learned that we had to rip the tags out of shirts (this was before the advent of tagless shirts).
Being familiar with the process of accommodating helped us when my husband was injured in November. Greg has been a paraplegic for four months; we have discovered what accommodations work and what doesn't -- for us. That is important, as every situation is different. People who have been paraplegics may look at this list and say, "Yes, but I don't do that anymore," or "That's interesting." I don't know. All I know is what has helped my husband and myself navigate this new world of paraplegia. For others new to paraplegia, this may also give them some ideas. I hope so. Here we go:
In his wheelchair, his legs often lean on the metal bars that go down to the footrest. Constant pressure of the bar was creating a pressure sore -- something that absolutely must be avoided. So we bought soccer shin guards -- not the socks, just the guards, in adult size. He tied them to the chair with ribbon, going through the holes in the guards. They're movable when he's transferring because the ribbon can be moved up or down, but they're securely tied to the bar of the chair.
Comfort and preventing pressure sores are top priorities in Greg's care. Before he came home from rehab, I purchased two very firm, standard-size bed pillows and two travel-size pillows. We use the firm standard pillows to prop his feet up while he is in bed at night, or even if he should lie down for a nap when he's at home on the weekends. We use the travel pillows, doubled-over, to either keep a foot from flopping to one side or under the foot to elevate it even more. Pillows helps to decrease edema (swelling) in the legs of a paralyzed person.
Washcloths and Hand Towels
It is inevitable that leaks will happen since he caths and cannot feel when he has to urinate. A substantial amount of plain white washcloths (that you can bleach while in the washing machine) in a small plastic dish tub of water, using a gentle liquid soap like Ivory, are crucial in cleaning up the groin area and his legs. We have something like 24 plain white washcloths we keep in one of his dresser drawers. If he's too fatigued to shower, I use this same process to sponge-bathe him in bed. I use this time to pray over each body part that I'm washing as he rests.
We use hand towels to place on the footplate of his wheelchair after showering. His feet are wet, and they tend to slip off, which is a safety hazard. A simple half-folded hand towel placed on the footplate fixes this problem. He also uses hand towels to dry his hair if he uses the sink for a quick morning hair adjustment. Hand towels are also used to dry each body part after it's bathed if he's having a sponge-bath.
Accessible Kitchen Island
While he was in rehab, our kitchen and truly, the entire house were renovated by our church family and people in the community that wanted to help. It was a huge blessing and a gift from God, truly. The kitchen, while beautiful and functional and new, was not so functional for Greg, who enjoys cooking. So my father-in-love made Greg an island on wheels that is the right height for a wheelchair and so he can roll under it to work. There's a hole in the top with a bin underneath for veggie scraps, and a storage shelf underneath as well for things he's using. This has given a level of independence back to Greg that he didn't have before the island. He makes a killer shrimp sauce for chicken-and-rice stirfry!
Along with the kitchen island, he keeps a 6' household electric cord that he uses to plug into the kitchen outlets. He takes a small kitchen appliance from a bottom cabinet that he can reach, and places it on the island, and uses the electric cord for power. A lot of what we have learned is from just trying to figure this out, and as running the food processor on the counter top wasn't working so well, we grabbed an electric cord from the laundry closet's junk basket and tried it.
Along with pressure sores, we have to be diligent about preventing urinary tract infections. UTIs can be dangerous in paraplegic people. While we found that drinking 100% cranberry juice helped some, our six-year-old daughter also liked the juice so it wasn't feasible to keep it around just for Greg. We discovered that cranberry pills are a lot more effective at preventing UTIs. He has had one UTI since coming out of the hospital about 3-1/2 months ago, and none since starting cranberry pills.
Sometimes, it's just a lot easier to wear a disposable brief rather than underwear. The big box stores have disposable briefs (we don't like the word diaper) in sizes S/M and L/XL, but Greg is a big guy. He can wear L/XL but they are very difficult to get on, and tend to cut into his skin. After researching some options, I finally found XXL disposable briefs! Sometimes I just have to spend some time researching and learning from others what will work for my husband. The XXL briefs are easier to get on and don't cut into his skin, and a lot easier for him to pull down when cathing.
Twin Bed Blanket
Because of nerve damage, he tends to be cold. I run hot and cold because I'm in the joyous menopausal time (said no.one.ever.) so I'm my own climate and cannot abide another blanket on the bed. So, I bought a twin-sized blanket that I put just on his side of our queen-sized bed.
Caring for a loved one who has been thrust into this new normal of paraplegia is scary and unnerving. You have no idea what the future holds, and in the first couple of months, we were basically just trying to figure out what worked and what didn't. Taking the time to think about ideas to help, and running them by your loved one, can help alleviate some stress. For us, shower nights are probably the toughest as they take so much energy with multiple transfers, undressing, cathing, bowel program, getting settled....it's all so much.
I just want to encourage you. It does get easier with the right tools, keeping the stress level down, and communicating with one another. A lot of prayer helps the most though -- always have prayer in your toolbox, no matter what you face.
(c) 2016 Terrie McKee
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