When Dignity Meets Dependence: Mastering Bowel Incontinence and Bedbound Incontinence Care for Your Loved One with Alzheimer’s or other Dementias

Wisdom We Wish We Had About Incontinence Once It Began. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned that full incontinence is an inevitable part of our journey. It’s a topic not often discussed, yet it’s a reality for us to navigate with compassion, dignity, and preparation — for both us and our care receiver. We are Nancy Treaster and Sue Ryan.

Through our experiences, we’re covering these two valuable topics to help you navigate bedbound incontinence and mobile bowel incontinence in your caregiving journey.

 

Understanding Full Incontinence in Dementia Care

 

Before we dive into our topics, it’s helpful to understand what full incontinence is and what to expect:

  • Full incontinence includes both urinary and bowel incontinence.
  • It may involve caring for or loved one who is bedbound or our mobile care receiver who’s had a bowel movement.
  • It can be a significant mental, physical, and emotional challenge for caregivers.

 

Sue’s Experience:

I learned that it’s very important to maintain proper hydration for our care receivers to prevent urinary tract infections and dehydration. However, this means more frequent changes. Some people struggle with the fact that they’ll need to clean their loved one every three hours. It’s important to adjust to this reality and have conversations about it if it’s challenging. This is an inflection point for your conversation about keeping your loved one home or moving them to a care community.

 

Let’s explore our two valuable topics to help you navigate this phase in our journey.

 

Topics 1: Cleaning and Changing Your Bedbound Care Receiver

Cleaning and changing your bedbound care receiver requires specific techniques and considerations.

 

Sue’s Experience:

I’ve had experience with loved ones both at home and in a care community. When I was at home and changing my loved ones alone, this was quite challenging in the beginning. I began writing the steps of this complex task to share with you and realized it would be much easier for you if I could find a video showing the process. We are all fortunate because there is one!

I wish I’d had this video, Changing an Absorbent Brief for a Bed bound Patient, by two hospice and palliative care nurses, Brenda Kazir and Nancy Hyerman, on their YouTube channel ‘The Hospice Care Plan’. Their video provides excellent, detailed instructions on changing a bedbound individual.

 

I highly recommend  you have a professional caregiver demonstrate these techniques and help support you when you’re first learning. I was actually afraid the first times I put on and changed my loved one’s disposable incontinence underwear. I was afraid I might hurt them and also somewhat afraid of what they might do if they felt I was trying to harm them. It would have been much less stressful to have had someone with me to teach me and to be a reassuring presence if something went wrong.

 

Additional tips I’ve learned:

  • Get all your supplies ready and within your reach.
  • Give one instruction at a time.
  • Maintain a positive, calm demeanor.
  • Keep moving, but don’t rush through the process.
  • Continuously check on your care receiver’s comfort and condition.
  • Check the integrity of their skin every time to prevent bed sores.
  • Cover the genitals while cleaning, as the warm water can sometimes trigger urination.
  • Depending on the size of your loved one, a pillow may not be enough to support them on their side. I recommend an actual wedge pillow to keep your care receiver stable.
  • Consider using a bed with rails for added support and safety.

 

Nancy’s Experience:

It’s important to note that bedbound situations can be temporary. When my husband had COVID, he was immobile for a few days. I had no idea what to do or how to change him. Even if you don’t need this information now, it’s good to save it for future use.

 

Topic 2: Changing a Mobile Care Receiver After a Bowel Movement

This process can be challenging, especially in the beginning. 

 

Nancy’s experience:

Here’s your step-by-step guide:

  1. Lead your care receiver to the bathroom. It’s easier to contain the mess in the bathroom and often helps support them in a smaller space.
  2. Prepare the area — Turn on warm water, lay out supplies, and place disposable incontinence pads on the floor.
  3. On the counter place a hand towel to dry them with and an extra disposable pad in case you need to cover a mess.
  4. Remove adaptive clothing and have them stand on the disposable pads.
  5. Put a trash can with a liner close by, preferably right behind them where you can easily drop the disposable incontinence underwear after you remove it.
  6. Stand behind them, slightly to one side, and carefully tear or cut one side of the underwear.
  7. Still holding that side from behind them, bring the underwear to the other side, enveloping the stool.
  8. With the same hand, right next to where you are holding the disposable incontinence underwear in the back, wrap another finger towards the front and cut between that finger and the ones holding the back.
  9. Tear or cut the other side of the disposable incontinence underwear.
  10. Reach around with your free hand and take the front of the underwear and lower it down between their legs.
  11. Guide the underwear to drop into the trash can.
  • YouTube video: Changing a Depend with a bowel movement here
  1. For cleaning, I use non-rinse bathing wipes (like Scrubzz). They’re soapy and don’t require rinsing.
  2. For females, wipe front to back to prevent infections. For males, clean the back first, then the front.
  3. Dry thoroughly with a towel to prevent rashes. Front first, then back.
  4. Quickly put on a new disposable incontinence underwear product before any additional accidents occur.
  5. Dispose of the dirty underwear and the wipes in a scented trash bag. To control odors, place it in an adult incontinence trash can.

 

Throughout the process, communicate clearly with your care receiver, explaining each step. 

 

Maintain a positive attitude and use encouraging language.

 

Final Thoughts

Navigating full incontinence in Alzheimer’s and dementia care is challenging. With preparation and the right mindset, it is manageable.

 

Key points from this blog:

This stage may be an inflection point in your caregiving journey. It’s both okay if you’re not comfortable handling this yourself, and possible you may not be physically able to handle this yourself.

If you’re using outside help, or your loved one is living in a care community, regularly check to ensure they are being changed frequently enough and kept properly clean.

Always prioritize dignity and maintain a positive, calm demeanor throughout the process.

Give yourself grace.

It’s reasonable this is a complex aspect of caregiving — we haven’t done this before! We don’t know what we’re doing because we haven’t been trained and there’s a lot involved with cleaning and changing our loved ones. When you’re going through this and you’re getting adjusted to it, we encourage you to reach out to others for support. Reach out to us, reach out to support groups, fellow caregivers, healthcare professionals, family members. Most importantly — reach out — you’re not alone.

It’s okay not to be okay with this and it’s ok not to feel like you ‘should’ do this on your own.

 

If you have tips you think others would benefit from, please share them on our Facebook page or Instagram page.

 

If you have tips you think others would benefit from, please share them on our Facebook page.

 

If you’d like more information on these topics listen to the podcast here

We’re all on this journey together.

 

Additional Resources Mentioned

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

  • Episode 10 – Incontinence Begins here
  • Episode 11 – Cleaning Your Care Receiver here
  • Changing a bedbound care receiver YouTube video here 
  • Changing a Depend with a bowel movement here
  • Disposable incontinence underwear
  • Wheels for bed
  • Bed with rails
  • Wedge pillow
  • Adaptive clothing
    • Shorts snap up here
    • Pants snap up here
    • Very nice adaptive clothing here 
  • Non-rinse bathing wipes here
  • Adult washcloths/wipes here
  • Disposable incontinence pads here
  • Round tipped scissors here
  • Scented small trash can liner here

Adult incontinence can here

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