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 pee 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.
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 foot
rests, 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.