ALS From Both Sides
Care of an ALS Patient
By Diane Huberty, Retired RN, Certified Neuro Nurse
...and ALS Patient
Toileting with a Lift
Half Bath Access
Women's Lib: Urinary Options
Women just don't have the plumbing to make urinating easy when transferring to the toilet gets hard. There are several possible solutions, none of them perfect, but every one is better than not drinking enough to delay having to go. That leads to chronic dehydration and bladder infections, constipation, and lung problems. The first step in solving the problem is admitting that you can no longer manage urinating without assistance. As is often the case with ALS, the result of insisting on doing things by yourself only makes things harder, riskier, and more stressful than they need to be.
Having help with something like urinating that has always been a private activity is a big step for most women. It is a big step for family helpers too. I still laugh when I remember one of the first times my husband had to wipe my bottom. The back of his hand over reached and dipped into the toilet. He jerked it back as though he had been scalded and jumped around the room moaning about having touched pee. His reaction was so much like a hysterical four-year old. I really expected him to regress to calling it pee-pee! That reaction is long gone and he deals calmly with all toilet details.
Urinary Catheters, sometimes called Foley catheters, take the worry out of needing to urinate so are often used by people who are home alone for longer than they can "hold it". The most commonly mentioned drawback to a catheter is the risk of urinary infections. Some people seem to be plagued with repeated infections, others never or seldom get them.
I am resistant to the idea of using a catheter for other reasons. Having had one while hospitalized, I know how incredibly painful it is to have the tubing get hung up and pulled during a transfer. It isn't a pain that ends when the pulling stops either. I found that sitting on the tubing was not comfortable for my private parts either.
Some women opt for a suprapubic catheter instead. This is a catheter that is surgically placed through the lower abdomen. The biggest drawback seems to be bladder infections, but again, some people don't get them. Some people have leaking around the tube. Many doctors are resistant to the request for a suprapubic because they don't see it as need, just a convenience not worth the potential problems. The convenience is considerable. As with the regular urinary catheter, it can be attached to a large collection bag or a smaller, more easily concealed bag. It can also be clamped and opened and drained when bladder fullness is felt. There is the added work and expense of keeping the bags clean and odor free, so there are several important pros and cons to a suprapubic catheter.
Before resorting to a catheter, I strongly encourage all women who aren't bed bound to try a female urinal. They have a curved cup that fits up against you to prevent leaks. They only work if you can be scooted /slouched forward in your chair so that you are slightly over the edge in front. For anyone with weak arms or hands, using a female urinal will require assistance. You can't wear panties and will have to be wearing a skirt or open bottom slacks to use it. These adaptations have been 100% worth it to me because I never need to worry about a full bladder no matter where I am. See
Adaptive Slacks for Easy Toileting
for a little more info on urinals and adapted slacks.
When buying a female urinal, find one with the longer section of the cup on the bottom. If it is at the top, it is only only useful if you can stand to urinate. "Spillproof" means that after use it will not spill if it tips. It doesn't mean leak proof while in use if it isn't snug against you! Spill proof is ideal for traveling or to keep in your vehicle. Spill proof urinals have a removable cup that can be positioned for standing or sitting. Unfortunately, pictures show them in the stand to urinate position which is confusing. I am not even sure why anyone who can stand needs a urinal!
This female urinal has worked very well for me. I have had few leaks since the first time I used it. We experimented and found that by reclining my wheelchair a bit, using the towel that I sit on to scoot me forward in my chair, and then placing my feet to the outer edges of the footrests, it is easy for a caregiver to position and doesn't leak. I wear open bottom slacks all the time but this would work with skirts as well. The urinal has a one-way valve in it so it can't be spilled after it is used. It comes apart easily for emptying and rinsing or washing. I bought it for use on a trip and now I keep one in the van so now my time away from home isn't dictated by my bladder. It is easy to use privately in the van and is definitely on my must have list. My husband prefers it to transferring me to the toilet so we use it at home as well. The urinal with the anti-spill section and the curved cup attached is rather large. It takes a few tries to learn how best to position yourself, and unless you have good arm strength, you will need assistance.
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