Focus on Quality of Life for Adult with Incontinence -- and Their Caregiver

Caring for an adult with incontinence is a challenge. For them, incontinence comes with feelings of embarrassment, sadness, loss of control and frustration. For you, whether a relative or informal caregiver, incontinence management can affect your quality of life, causing you social isolation, financial strain, and psychological and physical exhaustion.

Understanding Challenges Ahead

Your first step is speaking with a doctor to understand the reason for incontinence, which could be related to an underlying medical condition. When you know what to expect during the caregiver journey, you can take steps toward balancing your own quality of life.

There isn’t a more challenging or rewarding role a family member can take on than that of a caregiver. But the responsibility comes with several issues that can make caregiving feel difficult. Doctor-recommended strategies for managing daily care challenges can help.

Managing Resistance

Inevitably, someone dealing with incontinence will be met with the decision to wear pads or protective undergarments. This can be a potential roadblock for you as the caregiver, especially when your loved one has been independent for most of their life.

If feeling forced into a decision to wear protective garments, your family member could react with anger, denial, confusion or a flat-out refusal to adopt change. The ability to use the bathroom independently has been ingrained in most of us since we were small children. At its most basic level, this loss of independence can be difficult to accept.

Talk with your loved one. Understand their resistance and be honest about the use of pads and protective undergarments as a tool to help them maintain independence.

If your loved one is suffering from cognitive issues that make reasoning with them difficult, consider joining a support group or talking with your doctor about communication techniques.

Limiting Embarrassment

Embarrassment is going to weigh heavily on you and your loved one. If you’re dealing with a parent or a member of the opposite sex, this emotion can feel overwhelming. Compassion for your loved one may seem at odds with the embarrassment you (or they) might feel. Both emotions are valid and can be balanced in a healthy manner.

Take some time to talk to a healthcare provider or professional caregiver, friends and even other family members who’ve had similar experiences. But no matter what, don’t suppress your feelings — good or bad. Acknowledge them and build a care plan to get advice, support and actual help. Ask a family member to lend a hand when things are overwhelming or, if funds allow, consider hiring a professional home care worker to give you a break when you need it.

Regulate Your Emotions

Frustration, anger, resentment — you may find you feel all these emotions as a caregiver. They don’t make you a bad person; they make you a normal person. Sometimes caring for someone with incontinence can feel overwhelming. Properly cleaning them up to avoid infections and maintain their quality of life could very well feel like a drain on your quality of life. That, too, is normal.

The first step in regulating any emotion is to acknowledge it and reach out for help. Join support groups — online or in person. There are many support groups online that can offer encouragement, tips, tricks and strategies for just about any health-related issue. Ask your healthcare team or reach out to caregiver foundations to help you find the right support group.

Knowing you have someone in your corner, online or in real life, can go a long way to help you acknowledge and address the emotional challenges you’re facing as a caregiver.

Plan for Social Quality

A sense of isolation can be a problem for those suffering from incontinence and their caregivers. Outings to the doctor, to the movies, or even grocery shopping can be difficult when going with someone who is incontinent. You may feel like limiting these outings to keep accidents — and related emotions — to a minimum.

Planning can make those outings less difficult, more enjoyable, and improve the social quality of life for both you and your loved one.

Your plan can include:

• Packing a couple of small duffle bags with backup/emergency supplies and clothing changes. One can be left in the car and one can be taken with you for accidents.
• Pack a sealable plastic bag for soiled items.
• Identify bathroom locations and plan accordingly.
• Take frequent restroom breaks.

These steps can help reduce stress and anxiety and enable you and your loved one to be more socially active.

Create a Support Network

Understand the time, resources and energy needed to care for your loved one. It is tough to be at your absolute best when caring for an adult with incontinence. Accidents are inconvenient and supply costs can be high. And, if you’re supporting a loved one who is resistant to change or is dealing with cognitive barriers, the challenges can feel even bigger.

It’s important to establish a strong support network to help you to cope with your caregiver responsibilities. These resources can help you build your network:

• Your doctor
• Nurses
• Support groups
• Friends and family members
• Social workers
• Therapists
• Other care givers

Remember that you’re going through a difficult change as well. You’ve stepped from the role of spouse or partner, sibling, child or friend into that of a caregiver. Change isn’t easy. But with a strong support network and a plan, you can help your loved on preserve their quality of life and maintain your own.