Nancy and Sue’s experience:
When incontinence starts and it comes to cleaning your care receiver, if you’re asking other people to watch your care receiver, you will be asking them to change them and clean them. It’s reasonable this is a boundary some people are not comfortable crossing. When you’re putting together your caregiving support team, ask them the question about whether or not they would be comfortable changing your care receiver. Give them lots of grace and permission to be ok with not being comfortable. If they are, take the time to train them before they need to know, and if they aren’t, find a variety of other ways they can be providing support.
Let’s explore our three helpful tips to help you navigate this important part of your care giving journey.
Tip 1: Leverage Adaptive Clothing
Adaptive clothing can make the process of cleaning and changing your care receiver much easier. They have finally become widely used and accepted, meaning they are attractive and fashionable as well as functional. They are sometimes called inclusive clothing or post-surgery adaptive clothing.
Sue’s Experience:
Adaptive clothing are items that have different ways to remove them and put them on. For example, they have snaps, Velcro, zippers and/or magnets. Some of them have openings in the back, some on the sides, some of them have flaps. They adapt to whatever your care receiver needs and the challenges they face. When you’re working with adaptive clothing, it makes them faster and easier to remove so you can more quickly begin the cleaning process and then more easily help them dress once they are clean.
Nancy’s Experience:
All my husband wears now is snap-up-the-side shorts or snap-up-the-side long pants. For both men and women, I wouldn’t use anything else once you’re completely in disposable incontinence underwear products (for simplicity in this post, we’ll call them DependTM products – they are the brand we use on our care receivers). It’s not worth trying to pull their pants down and get them off their legs. It just creates more drama and makes a bigger deal out of something that you’re trying not to make a big deal out of.
One thing I learned is to be very careful because some adaptive clothing might snap all the way up the side to the waistband, and then the waistband doesn’t come apart. If you’re trying to do what we’re trying to do, you need it to be able to snap all the way off, including the waistband.
Tip 2: Choose the Right Cleaning Products
Having the right cleaning products on hand can make a significant difference in managing incontinence.
Early in the diagnosis, your care receiver may still be able to clean themselves. We want to help them maintain their dignity and support them as much as possible in their independence as long as they are able to effectively clean themselves. The more we observe and learn their personal cleaning habits, the more we will be able to align with what they are already familiar with and more gently ease them into our support and care.
Nancy’s Experience:
There are a variety of options you can use. Some people might start with just a warm washcloth for cleaning. There are also things called adult washcloths or adult wipes. They’re next to the DependTM products in the store. Don’t use baby wipes – they’re way too small.
Sue’s Experience:
Whatever you use, it’s important to keep them warm. I would keep the wipes wrapped in a towel so there wasn’t cold air getting on them. Some people put them in the microwave for 10 seconds. I was never really comfortable putting them in the microwave, although I’ve talked to enough people who do that and say they’re fine.
Nancy’s Experience:
This is one of those things I wish I’d known about. Before learning this, every time I helped my husband clean up, he would say “Woo”! Clearly, it would have been nice if I had done something to warm them up.
Sue’s Experience:
I can relate because I have a care receiver who, one time did the “woo” with the cold cloth, and it was a long time before I could use them on my care receiver again. Trust me, you want to keep the wipes warm.
Tip 3: Clean and Change Your Care Receiver
This process requires patience, practice, and a positive attitude. Here’s a step-by-step guide:
Have something underneath your care receiver, like disposable incontinence pads.
If possible, take off their adaptive clothing while they’re standing.
Have your care receiver sit down.
Unfasten the DependTM.
Use round tip scissors to cut the sides of the DependTM if you’re having trouble with their removal.
Before taking off the old DependTM, slip a new one over their feet and pull it up to their knees.
Have them stand up, remove the old one from the back, and pull up the new one.
Put their adaptive clothing back on.
It’s not as important to clean them thoroughly every single time you change a wet DependTM when they have urinary incontinence. You do need to give them a good cleaning in the morning and after bowel movements.
Nancy’s Experience:
Throughout this whole process, we’re telling them what we’re doing. “Let’s go sit down right here so we can change your underwear”. “I’m going to take your pants off”. “I’m going to take your underwear off and we’re going to put some clean underwear on”. Think of the look on your face while you’re doing it. Think of the body language that you’re using. Use positive language. We’re trying to make this as dignified of a process as possible and with the least amount of drama as possible.
Sue’s Experience:
As you’re giving guidance, be very clear and only give one instruction at a time. Don’t rush the process or your explanations. Watch them to learn what pace to go so they can stay with you. If you get them frustrated or rattled, it becomes much more difficult for them to cooperate.
Final Thoughts
Managing incontinence in Alzheimer’s and dementia care is challenging. With preparation and the right perspective it is manageable.
Sue’s Experience:
One of the things that I learned in a support group is to hire a professional caregiver while you’re learning to clean and change your care receiver. This is new for you, your care receiver, and for both of you together with this process. In the beginning, it’s cumbersome, it’s a process you’re not used to, things go wrong, it can be frustrating. Professional caregivers can demonstrate for you, observe you, give you tips, and help you develop a process and confidence. Whether or not you get professional support, you will figure this out. Please give yourself lots of grace in your learning, and no – there’s no ‘I should know how to do this!”
Nancy’s Experience:
This is often an inflection point in people’s journey where they start looking at care communities or bringing caregivers into the home to help them. It’s a lot of work and once incontinence begins, it’s part of the rest of your caregiving journey. It’s okay if this is a line you’re not comfortable crossing.
Key points:
Leverage adaptive clothing to make changes easier.
Use appropriate cleaning products.
Approach the cleaning and changing process with dignity and patience.
Give clear, one-at-a-time instructions throughout the process.
Consider getting help from a professional caregiver to teach you.
You’re not alone. Reach out to support groups, reach out to us, healthcare professionals, fellow caregivers for advice and emotional support – most importantly, reach out for support.
If you have tips you think others would benefit from, please share them on our Facebook page or Instagram page. You can find the links in our show notes.
If you’d like more information on these topics listen to the podcast here.
We’re all on this journey together.
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