I just got a couple calls from my mom this morning (in AL) that she is having sudden severe (by her report) incontinence. Nurses checked for infection and there is none, and mom is reporting no symptoms. She is in a period of decline for the past few months, and as of about 4-6 weeks she is now wheelchair bound full time. Her neurologist (who estimates she has an atypical dementia most similar to Lewy Body) 3 weeks ago advised us to start considering hospice after giving her a full mental and physical exam.
My question is, would the sudden incontinence be related to becoming wheelchair bound? Is it just part of the same muscles that can no longer hold her up becoming rapidly weaker? I haven't called a doctor yet, because I don't really know what he could do and dragging mom back and forth from doctors who can do little to help has become a drain on us (especially a few days from Christmas). I know the nurse and aides at her AL are doing everything appropriate. She's wearing a pad plus an undergarment, and is being changed as needed. She also has the potty chair nearby and help to the toilet whenever she needs it.
Do you think this is temporary or basically fecal incontinence is next? She is quite coherent today, by my standards. Fluid sensical speech, just some trouble with throat clearing.
The incontinence is probably related to the dementia decline that also caused her to be in a wheel chair. At some point they will not feel the "urge" to go in time to make it to the toilet. They may not be able to inform the care givers to help her go. She may also lose the ability to hold the urine. My best guess is that it is dementia related and will only get worse as she deteriorates.
One thing you can do is ask the care givers to take her to the toilet more often. If she connects sitting on the toilet with voiding then she will do it then and not have as many accidents. This is what we do with my Mom who is also wheel chair bound. They take her every 3 to 4 hours, letting her sit for a few minutes until she voids, and there are not many accidents. They also know that when she wiggles and squirms in her seat that she has to go. If they take her then, she will go in the toilet successfully. If they wait they have more work to do
Mom uses pull up incontinent products. They fit like underwear and are easy to change. They also afford her greater protection if there is an accident.
Just know that it is more than likely part of the disease progression.
One of the reasons I moved Mom to Hospice is because it was so difficult to take her to the doctor. Now, if she needs medical attention, the nurses and doctors come to her
Thank you Deb. You both confirmed what I was thinking, and offered good advice. Up until now she has either been transferring to the toilet herself (2 ER trips in November) or using her code alert button (December). I like the idea of discussing the regular trips to the bathroom. I'm not sure if they do that for residents who have more advanced bathroom issues than my mom has had up until now. I haven't talked to my mom yet this morning, but I didn't get any more distress calls yesterday, so that's good.
She has been using the pull ups, and that is what she has been soaking through. So I meant they were putting a pad inside the pull-up now for extra protection. Probably a good idea.
Yeah, after the last few ER trips and 2 doctor trips, I'm pretty close to done with doctor visits unless absolutely necessary. All we have coming up is a regular geriatric psychiatrist visit and I'm going to see how I can put that one off. She works in the same geriatric medical center as her neurologist so maybe they can confer. Her mood has been stable and meds are being taken. But I can see her not getting to her next primary care check-up in the spring, if we're not on hospice by then.
Right now I'm just crossing my fingers we get through Christmas without an incident. She always seems to have a fall right before a holiday where we plan to all celebrate together.
Thanks again, deb. I hope your Christmas is healthy and lovely with your mom.
Annie, you are approaching a place where we all eventually arrive in this journey. Is the stress on our loved one, and ourselves, with it all. Is it beneficial to our loved ones and worth the physical and emotional drain on us the care givers. At some point the doctors have no more to offer and we all just need contentment.
I do hope things go well for the Holiday and you are able to enjoy it with your Mom. Grab those moments of joy you have left and create new memories that will carry you through.
And cognitive impairment cause by dementia can create a situation where the patient no longer feels the urge or understands how to toilet themselves properly. It is not a bladder problem but a cognition problem. Incontinence is a typical symptom of all dementia at some point.
Yeah, I didn't mean to imply a definite link between wheelchairs and incontinence. I am just trying to grasp and adjust to this new stage in her disease and it seems to include both wheelchairs and increased incontinence.
The extreme incontinence was temporary, thankfully. But I'm pretty sure it was just a sign of what's to come. I feel like symptoms suddenly appear and disappear just to warn you what's coming and give you a chance to prepare, if you're paying attention.
And it is cognitive related. My Mom's dementia has wild fluctuations in attention and alertness. The extreme incontinence to me seems like one of those mornings where she slurs so much I can't understand a thing, or no matter how many times I ask her a simple question I get a blank stare. This is just foreshadowing and I appreciate the heads-up from the powers that be.
You are so right Annie. Those wild swings in the middle of the disease are just that... an early warning. It is a big flashing "This is what is to come" sign.
Just a heads up, Urinary Tract Infections (UTI) can cause dramatic changes in both behavior and physical symptoms. If there is a dramatic decline or period of irrational behavior it is always good to have a Urinalysis done. I have found this to be the case over and over again. Mom's behavior would suddenly become out of control only to find out that she had a UTI. After a round of antibiotics her behavior would improve. She started having recurrent UTIs and was finally put on a maintenance dosage of antibiotics to prevent the UTIs. This worked well for a number of years until we had to take her off the antibiotics due to digestive problems. 8 months later she had another UTI which literally knocked her off her feet. She was walking on Friday and in a wheel chair (never to walk again) by Saturday afternoon. If they are on the verge of losing an ability, a UTI can suddenly take it away. Eventually I just kept a toilet hat (to catch the sample) and a sample container in her room. I would get the sample and take it in. Eventually I was right about 99% of the time. Improper cleaning after toileting and hydration are the two main reasons for the UTIs and a result of the dementia.
There can be a connection between the wheel chair and the incontinence. The cognitive decline that resulted in the need for the wheel chair can also cause the toileting awareness to decline. Not to mention that the constant sitting can lead to the UTI which can often present as incontinence. It's all separate but in some ways it is all connected because it is all caused by the disease decline.
Nothing in this disease is simple. The constant roller coaster of up and down just makes it more impossible...
Yeah, we knew she didn't have a UTI because the nurses at the AL were checking her, it was the first thing I asked about.
Also, I read another reason the elderly are susceptible to UTIs other than hydration and hygiene. It's also the decreased motility of the bladder muscles which leads to incomplete emptying. Bacteria can build up in that environment.
I asked my mom again this morning, as we discussed New Year's Day plans, how she was doing with the incontinence since she had no incidents when we were with her for Christmas. She said she stopped having tea or coffee at every meal since then and it stopped. That was her idea, and I said way to go at a good attempt to solve a problem. I just love when we have these little "wins". She's now having water or a glass of cranberry juice instead, agreeing that staying hydrated is very important, and having more success at controlling her bladder. For now...