Tag Archives: incontinence

Incontinence Meds: Could they make the situation worse?

If you’ve been following our story, you know that I’ve written about my mom’s incontinence and how really bad it’s been caring for her lately. Things continued to be terrible as it related to keeping her in clean briefs and clothes.

Until recently. Recently, it’s gotten better and the whole thing has me wondering. The following is our experience. I am NOT a doctor and I’m not making any recommendations. What I am doing is posting some food for thought that may prompt discussions with your loved one’s doctor if you are battling incontinence (and I say you because it’s more than just your loved one who’s dealing with it).

ID-100240967We ran out of my mom’s incontinence meds a couple weeks ago and I’ve been too busy to refill them. (Cut me some slack. They aren’t life-saving pills.) Here’s what’s changed over that time–

She is having fewer leaks through her Depends. We were sometimes going through 4 pair of slacks a day and changing her sheets every other day. She is almost never leaking through now.

She has not had a bowel blow-out since she hasn’t been taking the meds. She still soils her brief once in awhile but that is very manageable compared to the weekly explosions we were experiencing.

More often than not, when she’s on the toilet, she pees. Before, I think she would go to the bathroom after she had just gone because nothing was going on once she got there.

She hasn’t argued, fought me, called me a name, cussed or spit at me in the bathroom for several days. Before, she would at the very least call me a bitch two or three times during the changing process.

I don’t have an explanation for any of this other than she isn’t taking the meds. You may recall when I took her to the neurologist in April, I asked for a higher dose of the incontinence meds hoping to get some relief from the awful situation.

I’m not a doctor, but here’s what I know about Oxybutinin: it doesn’t change how much you go, only how often. The point was to spread out the episodes to help me manage it better. Say every 4 hours instead of every 2. I wonder…by going less often, but going more, was it too much at once for the Depends to handle and so she would leak more often?

It can cause constipation. She always has very soft stool. But I wonder…was it bunging her up to the point that she would just explode with no warning?

It crosses the blood-brain barrier and can counteract Namenda (an Alz drug). The last several days she has been more engaged with the family. She sits in the living room with us more often and smiles more often. She’s also less argumentative…in fact, I would say she has not been argumentative at all for days. I wonder…has the Oxybutinin been contributing to her foul mood and withdrawn personality? (Note: She’s no longer on Namenda)

I don’t know if any of this is an actual cause and effect relationship.

But I do know I’ve been praying for relief and even about the idea of working full time so we could afford to put her in a facility. So whether or not the drug has anything to do with it, I do consider it an answered prayer. God is good!

If you’ve had a similar experience with incontinence medications (or the lack of them), I would love to hear from you! Please leave a comment.

 

Photo Credit: FreeDigitalPhotos.Net by Stuart Miles

The Cadillac of Alzheimer’s Patients

The last few weeks have been rough. I.mean.rough!

If you’re an Alzheimer’s caregiver, you know that things will go along pretty steady for awhile, and then suddenly, it’s as though your loved one falls off a cliff and is markedly worse and you find yourself having to navigate another new normal. That’s where we are right now.

Showering has always been an ordeal and a struggle. From start to finish it’s usually at least an hour-long if not afternoon-long undertaking that includes hitting, yelling, cussing and stand-offs. (To be clear–and honest–while my  mom is the primary owner of all of those behaviors, I have been known to participate in all but the hitting.) Since it’s always been an ordeal, we are used to it. We don’t like it, but we deal with it.

Add to that worsening incontinence and more hitting, yelling, cussing and stand-offs when it comes to needing to change the pants. And, don’t forget the additional mounds of laundry and multiple-times-a-day bathroom cleanings that go along with that.

It’s been rough.

That’s why I’d been looking so forward to my mom’s semi-annual trip to the neurologist. She’s much worse than she was on her last visit. She’s lost a great deal of language and is much more weak physically in addition to the aforementioned issues.

I had two goals: The first was a “happy pill” to make her more compliant. I don’t want to turn her into a zombie. She sleeps (or at least lays in her bed) around 20 hours a day as it is. But, I do need her to be less argumentative about these matters of hygiene. Not only for her sake, but for that of the entire family.

The second was an increased dose of her incontinence medicine for obvious reasons.

I knew the doctor was likely to be resistant to both of those requests as both carry side effects that range from constipation to making the dementia worse/progress faster or even death depending on the drug. While decisions like this aren’t easy, it all comes down to quality of life vs. quantity at some point.

Appointment day finally arrived! I was going to make my case and get the help I needed to improve the quality of her life as well as that of the family!

It was going to be a heck of a day. My mom would have to shower, brush her teeth AND get dressed before we left for the appointment. I was gearing up for a big battle.

She didn’t really fight me. She got a little belligerent when I washed her hair, but that was it. As I helped her dress, she pulled her turtleneck sweater over her head and as her face peeked through she looked at me, we smiled at each other and said, “Peek a boo!” at the same time. We both laughed hard at that. As we drove the 45 miles or so to the U of M Turner Geriatric Clinic for her appointment, she was quite observant, reading signs and commenting on the scenery.

I thought to myself, “She’s having a good day.”

When we entered the doctor’s office, I began to paint a picture of just what life is like dealing with the incontinence and the combativeness. I told the doctor that I would describe my mom as nearly completely incontinent of bladder. It was just about that time that my mom spoke up and said, “I need to go to the bathroom.” Humph.

Upon returning from the bathroom, the doctor began to give her the mini-mental.

Question 1: What’s your birthday? She always knows that and she got it.

Question 2: What year is it? She had no idea–she never does. The doctor said, “It’s two-thousand something. Can you guess what it might be?” My mom replied, “2014.”

Before the next question, my mom asked the doctor, “Is your name Dr. Heidebrink?” At which point I burst out laughing! How in the heck did she know that? She hasn’t seen her for 9 months! It’s not as though her name is “Dr. Smith” afterall!

Question 3: What month is it? May. It’s ALWAYS May because her birthday is in May. Doesn’t matter who asks or when, it’s May. Not yesterday. Yesterday it was March!!

Question 4: What season is it? Let’s see…she was wearing winter clothes, a winter coat and there was snow on the ground when she went outside. Yup! SPRING! Not even 24 hours into spring but it was spring! In the four years she’s been getting the mini-mental I don’t think she’s ever gotten that one right before.

UNBELIEVABLE!

cadillacShe actually ended up scoring two points higher on the test this time than she did 9 months ago. It was like taking your car to the mechanic and all the dings and rattles suddenly stop!

Sometimes, it’s easy to forget that from the doctor’s perspective, it’s actually my mom that’s the patient and not me or the rest of the members of our household. Getting the meds I was asking for was not looking good at this point.

Then I just really put it out there about how her behavior is impacting the family and the care-giving situation and that all of this stress can’t be good for her either. The end result was a low-dose anti-anxiety pill and an increased dosage of incontinence meds. I’m very hopeful that the anti-anxiety med will do the trick. Honestly, the only time she is combative is when it comes to hygiene and everything about hygiene takes place in the bathroom–a room it is obvious makes her very nervous. I can’t know which came first–the anxiety over the bathroom which makes her resist the hygiene tasks, or the resistance of the hygiene tasks which causes the fear of the bathroom. Either way, this drug could be the answer.

As we left the doctor, I asked my mom what her favorite car is and she said a Cadillac. I told her I was going to start calling her “Cadillac” because she acted just like a car at the mechanic!

Although the timing of her having a good day wasn’t great in terms of the doctor getting a true picture of how she is doing, I sure wish there were more days like yesterday!

 

photo credit: “the most beautiful car in the world” by contemplative imaging

Dementia and Incontinence

Over the last few weeks, my mom’s incontinence has gotten MUCH worse. I would classify her as almost completely incontinent of bladder and about 50% incontinent of bowel. While these issues have been creeping up and steadily getting worse, they’ve been fairly well managed because she’s been willing and capable of changing her own briefs. When we’d notice she’d had an accident, we would ask her to change her pants and she would.

incontinenceOver time, the “passive” assistance she’s needed with this has increased. We used to keep the briefs in a drawer in the bathroom. Then we kept the package on the floor in the bathroom. But, she started hoarding the briefs by taking a handful at a time and putting them in her bedroom. The problem came in when she’d go into the bathroom with a full brief and no clean ones in sight. Lacking the ability to solve that problem, the dirty brief was left on and leaks and accidents occurred. We are now vigilant in making sure there is always one, and only one, brief sitting right on the sink next to the toilet.

Now, she needs “active” assistance. She has a hard time figuring out how to get the brief off and a new one on. That goes hand-in-hand with the job of care-giving. No surprises, it’s part of the job.

BUT, often, she flat-out refuses to take it off. The other day, my husband and I spent the better part of 6 hours trying to get her to change it.

Pause for just a moment and think about that smell. If you’ve never encountered it, you’re blessed. If you have, you know it’s a gagging, hold-your-breath-as-long-as-you-can smell. It permeates the house. Forget the job of cleaning her up, that’s nothing compared with enduring the smell while trying to convince her to change.

Maybe you’ve never cared for an incontinent elderly person, but if you’ve cared for a baby, you know diapers only hold so much. If they aren’t changed, eventually they leak. Through the clothes. Into the bedding. Into the upholstery.

Adjusting to this is rough. I don’t cry very often about this whole caregiving thing. I’m not always happy about it, but it’s my job and I do it. I’ve had complete hysterical melt-downs twice in the last three weeks.

She’s been averaging 3 pair of slacks a day. Changing the sheets is about an every other day job now. I clean the toilet and bathroom floor as many as 4 times a day. Twice in the last two weeks she’s fallen down in the bathroom. Thankfully, she hasn’t been hurt. In both instances, her pants were half up–or down. We aren’t sure, but we think she has lost her balance trying to get the pants up after she goes.

There are so many factors that could be at play and it’s so frustrating that she can’t really communicate what they are. Here’s just a few thoughts and possible solutions. Even if they’re strategies that aren’t working for us, maybe they’ll work for you and your loved one.

  • She’s afraid of falling. We’ve installed a raised toilet seat with grab bars on the side. She seems to not really know what to do with it, but I’m working with her to teach her to use the grab bars.
  • Her pants might be too difficult to get up and down. She wears only elastic waist pants, so I’m not sure what else we can do here, but if your loved one is still wearing pants with zippers and buttons and snaps, it might be time to change.
  • Her brain might not be receiving the signal that she needs to go. Not a thing in the world we can do to fix that, but encouraging her to go to the bathroom on a regular schedule might help. We just have to figure out how often that will need to be.
  • She’s lost the ability to solve the problem of cleaning herself up and attending to the details of putting on a new brief when it is wet. We accompany her to the bathroom when necessary and stand outside the door to listen other times to see if we need to intervene.

As always, I encourage you to do your own research. Both Alz.org and Caring.com have great resources on the topic of incontinence and Alzheimer’s. Of course, you should also talk with your loved one’s doctor. There are medications to help; however, like any medication, they involve pros and cons, risks and benefits and there is no single solution for every patient.

One final and important note…if the onset of incontinence is sudden, it probably isn’t a result of the dementia, but rather a symptom of an infection. Please get your loved one into  the doctor promptly!

If you have some tried and true strategies for caring for an incontinent person with dementia, please share in the comments!