Facing the Loss of Bladder Control
Many of the following ideas, experiences, and suggestions discussed here came from the many members
of the HUNT-DIS community and I'd like to thank them for their selfless commitment to supporting
those who have just learned that this terrible disease has affected their lives and are now searching for
help. - Steve Ireland
Most people at some stage of HD will be faced with the problem of incontinence (the loss of
bladder control). Unfortunately this can represent, in the mind of the person, a major
degradation in the quality of their life. Therefore it needs to be handled delicately -
but with as much of an attitude of "just another thing that needs to be dealt with" as possible.
What causes incontinence?
There are several reasons that can cause incontinence but in the case of the Phd the two most
common causes are either the deterioration of the brain cells that send the signals that control
control bladder flow or it could be a side effect of the medications used by the Phd. It is very possible
that the medication could be inhibiting the flow of the bladder control signals. There are, however, many other
reasons that could be causing the problem and it is imperative that a physician perform a full examination.
Also, some actually take precautions against accidents because of the possibility that the caregiver may not
be able to get the Phd to a toilet in a timely manner. In this case the Phd may actually want to use an incontinence
solution as insurance against an accident even though the Phd may have fairly good control.
Medical Evaluation
You should have a full medical evaluation to determine the cause of the incontinence. For the physician
to be able to give an accurate diagnosis you should provide the physician with a record of the problems such as when they occurred, what you were doing,
and any other related factors such as a history of when the person used the toilet. if the cause of incontinence is something other than HD
there are a few medicines available that may help. There are also medications that can increase bladder capacity
for Phd's so that they don't need to urinate quite as often.
How do I handle the emotional issues?
As a caregiver - be prepared for this stage. Try a preemptive strike by discussing it with the
Phd during the early stages (before the problem exists) by discussing it as a normal progression of the disease.
Talk with him or her about others who are incontinent and who've openly discussed how they handled it. If the
Phd is prone toward anger or aggressive behavior then the chances are that they will still react strongly to this sudden
loss of self control. Be prepared to council, sympathize, and provide the much needed emotional support.
This symptom of HD is another signal to the patient that they've lost a little more
independence. They are going to be dependent on someone helping them to urinate and this can be
a very humiliating experience. The best thing to do is to convince them that a large percentage
of the population has this problem and that there are many different forms of protection
designed to handle it. Try to find someone they know that has a similar problem and mention
that to them so that they don't feel alone. Over 15 million Americans suffer from some form of
incontinence. Ten million are women, five million are men. The market for adult protections has been growing
at the rate of 25% per year so the odds that someone they know is also dealing with this same problem
is very good. According to an Austrian study the following percentage of individuals are dealing with
incontinence:
- At age 20 to 29 years, the rates were 4.1 per cent for women and 1.7 per cent for men.
- At 30 to 39 years, they were 10.8 per cent for women and 2.7 per cent for men.
- At age 40 to 49 years, the rates were 22.9 per cent for women and 3.9 per cent for men
- At age 50 to 59, they were 34.9 per cent for women and 3.7 for men.
- By age 70 years, the rates were 36.0 per cent for women and 11.5 per cent for men.
Try not to use the term "diaper". Instead refer to the undergarments as simply "protection", "underwear",
or "depends". The word diaper can be an emotional trigger.
What can I do to manage the problem?
First make sure that the Phd is wearing clothing that can be easily removed and that they regularly
use the toilet. Be ready to keep everything ready for them (toilet lid up, toilet seat down.)
If you are caregiving at home, in the early stages you might be able to improve the situation by helping your Phd stay on a
regular toilet schedule. Use an audible clue that can trigger the patient to visit the toilet
at regular times. First determine a suitable frequency by noting what times they typically go,
the times between visits, ... etc. and then set an alarm or timer to go off at these selected times.
You might start with ½ hour after each meal and then add additional visits where necessary. This may
initially and periodically require a firm hand to condition the Phd to this schedule.
In nursing homes they often do not have the staff to help the patient to the toilet on a regular schedule
so don't be surprised to find the patient in protective underwear during the day.
Change to a vinyl hospital bed mattress or cover the bed mattress with a rubber covering. Once a mattress
is soaked with urine it's impossible to get it out. One person recommends three layers of vinyl
mattress protection with each layer covered by fitted sheets. If an accident occurs they strip the sheeting
down to the first dry layer and then build it back up again. The top layer is a drawsheet which
is used to help move the patient to the necessary positions for cleaning, changing sheets and changing
clothing.
For couches and sofas you will want to cover them with vinyl and then cover the vinyl with sheeting
that matches the decor of your home. The same method of protection applies for pillows.
What products are available to handle incontinence?
One of the most popular items is the Depends pull-up. It's comfortable enough to wear all of the time AND it seems like a
normal pair of underwear (albeit a little thicker) to the Phd. Most caregivers report that it causes
less stress when putting it on. Some Phd's even wear them for peace of mind by providing
insurance against accidents even though they still have good control.
For males, make sure that the penis is pointed toward the area of the product containing the most
urine absorbing material.
If voiding often takes place in the middle of the night, one trick that was suggested was to double up a layer
by inserting an absorbent pad inside the protective garment. If the change needs to take place
in the middle of the night you may be able to simply remove the inserted layer which leaves the outer garment
still dry to provide protection for the rest of the night.
Another option is the use of a catheter. They involve less cleanup but they also have
a few problems. First, if the Phd has chorea then the equipment may be accidentally and sometimes
painfully dislodged. Secondly catheters can often cause infections. And for women the insertion and
removal of a catheter can be painful for a highly sensitive and easily agitated person.
To shop for incontinence products over the Internet try:
Sears also offers a Home Health Care catalogue where you can by protective brief that has a "fly-front"
for those men who insist on wearing something they're familiar with.
Okay, the inevitable has occurred. How do I remove urine stains and odor?
Don't get upset or angry. It's not their fault, it's not yours. If you can - smile. Stay
relaxed and deal with it.
Products that have been recommended for cleaning urine from the body include the following.
You will probably need to go to a Medical Supply Store to purchase these products (except for the
Babywipes).
- Peri-Care
- Peri-wash II
- Alor Vesta Perineal foam skin cleanser
- Sensi-care Perineal cleanser
- Bedside Care
- Babywipes
Products that have been recommended for removing stains from carpets and sheets include the
following. They are available at pet stores or large drug stores. But be sure to soak up as
much of the urine as possible before using these products.
- Nature's Miracle
- Odoban
- Fabreeze
Provided by Steve Ireland, E-mail: stevei@vvm.com Website: www.hdac.org
Answers to this question can be found through these links:
- Incontenence Center
- Published by SeekWellness
- Incontinence in Dementia
- Published by Alzheimer's Care. This is a MUST read.
- National Association for Continence
- Published by NAFC.
- Managing incontinence and toileting issues
- Provided by InteliHealth
