Deshae Lott

determined sojourner

Deshae in the shower

FAQ: Personal  care issues

Can you spend time out of the wheelchair?

Yes, I do in order to travel beyond the home and when I lay in bed and use the restroom. This involves someone, almost always my husband, leaning over me, squatting, and putting his arms around me, locking his elbows in place tightly against my ribs, and picking me up. However, particularly strong guys can pick me up and set me down like a baby. It is to our great benefit that my weight seldom goes higher than 105 pounds. I also have a Hoyer lift that others can use for taking me to the bathroom, but it means I must sit on a harness with a cut-out in the bottom. Also, I have a Multirall lift/track system stretching from our bed past the shower and tub and to the toilet that I can use, although also that would mean using a sling and a strap next to it to carry the vent hung from it. Unfortunately, I'm now to the point where for any of these operations, I only can be off the vent for a couple of minutes at most. So, during hair washing, sitting on a toilet, and taking a bath I have to get hooked back up to it.

How do you use the bathroom?

Fortunately, except when I was unconscious, I do so without a catheter -- a potential source of infection. There are three possibilities regarding urination (from the perspective of a female, obviously), not counting using the lift/track system (which is much like manually being lifted and placed on the toilet).

One, my husband transfers me to the toilet at intervals throughout each day.  My toileting routine dictates my clothing choices to some degree. Although I don't have any specialty clothing for wheelchair users, we find it easier to manage restroom trips when I wear certain styles of clothing. For example, I wear many wrap skirts or short shirts now; the best skirts are neither tight nor clingy in fabric; they must fall easily. My husband finds it strains his back less, if no one is around to assist him, when he’s holding me and maneuvering my panties if I wear smaller styles of those as well: a thong or g-string is easiest up and down for him.

Two, in my standing wheelchair I am able to use a female urinal that has a removable cup that, when placed correctly, extends from the perineum in back to my lower abdomen in front. I get the chair to stand me up, not all of the way but perhaps at a 75-degree angle, have my skirt lifted and underwear (if wearing any) pulled down in front (again, a g-string or thong pose little difficulty for this task), have the detachable cup put between my legs with a tight seal, and the remainder of the urinal attached extending out. Then the urinal can be supported up against me from the bottom. After finishing, the whole thing is slid out. Obviously, this works only for urination. Having a wheelchair with a wide footplate is necessary for me to spread my legs enough before standing for this to work. Also, I have found that urinating at frequent intervals seems to help, as I suspect when standing if my bladder is too full it distends in a way when I stand that makes it difficult to start urinating.

Three, an alternative way for urinating later at night or earlier in the morning or whenever I'm in bed is to use a different female urinal that is flatter in profile. To succeed without leaks took us a little practice, but really it’s a matter of spreading my legs out of the way like a frog's and pressing the longest-protruding lip of the urinal firmly against my perineum which means the remainder does not have to press around and encompass the area surrounding my urethra unlike when standing. Again, this method accounts only for urination. Note, the female urinals I use are adaptations to a bed pan and not like the urinals affixed to walls in men’s public restrooms. Also, best results are obtained by having pubic hair removed from around the urethra.

Before vent life, using grab bars I could be propped standing, legs spread somewhat and rams out holding the bars, and lock my legs into place where then somebody could gently pull up or down my underwear before grabbing me on the way to seating me somewhere. Regrettably, that's no long possible.

For defecation, the first option is the only realistic one. Fortunately, continued successful execution of that prevents me from needing a colostomy bag.

How do you sleep in a bed?

I don’t often sleep well.  One option is sleeping in my non-standing wheelchair, but it leaves me stiff and achy. I really can't do it for more than 2 nights consecutively due to comfort and edema issues. The bed is preferable. At first, my husband used to lift me into it, after having set up an array of pillows to give me a 30-45 degree angle. He also propped additional pillows under my head and a pillow under each of my hips to relieve pressure points. This lasted only a short while, so I woke my husband anywhere from 3 to two dozen times a night to adjust me.  Now I still at times awaken him, and he rotates my hips, straightens my legs, props my legs on a bolster pillow towards the foot of the bed, varies the number of covers on me, shifts other various body parts like my head or elbows, moves propped pillows under me, adjusts me by pulling a bed mat on which I lay, places the urinal against me, and suctions mucous from my lungs.

For some years some of these problems had been alleviated by my using a Völkner Turning System air mattress which rotates me throughout the night without any extra propping. It reduced the chance of pressure points, meaning I woke my husband far less as I stay much more comfortable. It's trickier getting a urinal under me, and I urinate more often in the middle of the night (because my fluids are getting shifted more than at any other time);  it sometimes also moves my head, arms, or legs out of position requiring them to be adjusted, but the positives far outweigh the negatives. With the Völkner mat that gentle rotates me automatically all night (provided the electricity is on), both of us got much more rest.

Unfortunately, this device because of its construction began to aggravate a persistent pressure sore at the juncture of my left sacral area. As I have lost muscle mass, and progressively continue to so so, there is an increasing number of areas as I lay that potentially match up skin directly against bone. This has caused problems for other devices as well, such as comfort in my standing wheelchair and in underwear choices (the thong strap or g-string string can rub against that spot, and even full-back underwear may aggravate it as well, so whenever we have assistance for the entire day in taking me to the bathroom, I'll wear cotton full-backs, and my thongs and strings are seamless). Thus, I had to stop using it, and for awhile used a simple alternating flow air mattress overlay.

Currently, I use the SpanAmerica PressureGuard Turn Select therapeutic mattress, which is programmable to give rotation angles and times to achieve them. So far, for the stage of my deterioration, it is the most comfortable.

I also used to use an oxygen concentrator that takes oxygen from room air and feeds it into the vent to make sure I oxygenate well at night. But after further testing and weighing pros and cons of oxygen use for someone in my condition, I typically use it during sleeping on when having difficulty breathing, such as shortness of breath, tachycardia, and other issues.

Before the vent, I slept mostly on each side.  Each morning while still in bed, I would be rolled into a face-down position with the lower leg (below the knee) hanging off the bed unsupported. Then ankle weights would be strapped on to stretch tendons behind my knees. None of that is possible with using the vent.

When I sleep, the vent alarms from low volumes it senses. Air can escape through my nose and mouth if I'm not consciously controlling it and helping the vent breathe for me. The muscles that make breathing autonomic for most of us are too weak to do the job my body needs. So I do not adequately expand my lungs when I tire or sleep unless the vent does all of the work. To turn the job over, my nose and mouth must no longer act as airways -- the trach tube can be the only airway. This is accomplished by injecting (in my case) 5-6ccs of normal saline water into a balloon of sorts (the “cuff”) around the trach tube. In such a state, my body is better oxygenated, but I cannot speak because no air passes over my vocal chords. I have a radio-controlled device that turns on a receiver that brings power into whatever is plugged into it. We have it attached to a radio with the volume set loud. This is how I wake up and alert whomever is with me. In my past, if someone wasn't in the room with me, I could send my service dog Ulina to get somebody. But now I can't speak to do it, so I have to get the trach tube cuff deflated first before I can inform anyone about the situation I need addressed.

How does a shower work for you?

It doesn't, anymore. I became too weak to be able to breathe that long in a steamy environment. Now, I have the lift installed that can take me to the bathtub, where the vent can hang off to the side in a way that works without undue stress on my stoma.

But when I used to take these, I used our walk-in shower with a ledge on which to sit. I'd park in our bathroom close to the shower door, which opens out. My husband lifted me a little higher than normal and stepped up and into the shower stall with me; then he sat me down on the ledge. During this process he wore special surf shoes with an incredible grip on them, and we put a mat down on the floor of the shower to help prevent slips as well.  I sat on a towel folded twice for padding so the ledge is less painful on the bonier portions of my derriere. We kept the shower door slightly ajar because of problems breathing in the shower -- my sauna days are over. To prevent water from entering my stoma, the hole in my neck where the trach tube is inserted and to which the vent tubing connects, we must seal the trach well.  We have a handheld showerhead that assisted with this process. My husband soaped me down from the top of my head to my toes (webmaster's note: I didn't mind this part at all). When this process concluded, my husband wrapped a towel around me to enhance the grip he needed to transfer me back into the power chair. Most days I didn't take a shower, or bath now; instead I am bathed in my wheelchair with a washcloth and water from a sink.