Tag Archive for: caregiving support

Caring for an Ostomate with Memory Loss

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By Sarah Biggart (Convatec me+™)

Frequently I speak to callers about the challenges of caring for an ostomate with memory loss. Often time, people who were previously self-sufficient, independent ostomates become pre-occupied with their pouch; sometimes even pulling on it, which could cause numerous issues1,2.

This could be in the future for some of us, and a reality some caregivers are facing now as they care for and support loved ones.

If you are assisting a loved one, and you see them tugging, pulling, scratching or playing with their appliance, the first thing you should consider is that there may be a reason for this behavior. Their peristomal skin may be itching or burning, or they might be experiencing pain or discomfort around the stoma3. For someone who may have trouble communicating, this could be their way of letting you know something is wrong.

If this is a new behavior, contact your local ostomy nurse or healthcare provider. It’s important to rule out any medical issues they may be experiencing.

If the issue is determined to be purely behavioral, we have some suggested tips and tricks that may help as you care for and support your loved one.

Pouch Change Tips1,2,3:

  • Create a safe, relaxed environment. Take your cues from your loved one considering where they are the most comfortable. Maybe instead of standing in the bathroom, try laying down on the bed with soothing music or a favorite show playing in the background.
  • If evenings can be tough, a morning pouch change before eating breakfast may make more sense for you.
  • Keep ostomy supplies organized and clearly labeled for people who may be able to handle pouch changes independently or for rotating caregivers.
  • Use a calendar or the My Ostomy Journey App to track pouch changes. Do not wait until there is a leak to change the pouch. A leaking pouch may contribute to skin breakdown issues.
  • It may be necessary to store pastes, powders and sprays securely, as patients may attempt to tamper with or ingest these items.
  • Try ostomy accessories designed to simplify pouch changes.

Daily Living Tips1,2,3:

  • Many people with memory loss find comfort in routine. Find a rhythm to ostomy related tasks, such as emptying the pouch, and use the same verbiage each time to bring familiarity. Coordinate with the entire care team to ensure everyone is aligned with using similar language and prompts.
  • Staying occupied may help with keeping hands away from the pouching system. Things like puzzles, sorting items and folding something, may be just the thing to help.
  • Try an Ostomy wrap. Employing the “Out of Sight, Out of Mind” principal, a wrap helps to keep the pouch concealed and supported. A good ostomy wrap is made from a soft and stretchy wicking fabric and helps to keep sweat and moisture away from the skin and the wearer cool and comfortable.

Feeling isolated while providing care for loved ones is a common challenge, we encourage utilizing groups for ostomy support.

And remember that caregivers need care too. You may find comfort in your local Ostomy Support group Find one near you on the UOAA support group finder: https://www.ostomy.org/support-group-finder/.

 

Ruth and her family were confused and stressed when they had to take on the care of their 99-year- old mother’s ostomy.

“My mother has had a colostomy for nearly 60 years. She is now 99 years old with dementia, but had been independently keeping up with her stoma and pouch until just a few years ago. When family members started taking on the task of assisting her, we had to scramble to get up-to-speed since we never paid attention to the details of changing her “appliance” or emptying and re-closing the pouch.”

Ruth connected with me+™ to learn more about how to use ostomy products and accessories, and received follow up product samples and ongoing support.

“Erica was compassionate, truly listened to the problems we were encountering with my mother’s situation, and suggested products that addressed each of those challenges. The bottom line is Erica made me feel supported in my mother’s care, and that she cared that our family wanted my mother’s quality of life upheld when other healthcare providers wrote her off due to her age and mental condition. Erica contributed to us honoring my mother’s wonderfully rich and productive life at a time when that’s not evident to a stranger’s eye. We are so grateful for the support we’ve received through Convatec’s me+ Clinical Support Nurse Team.”

 

If you have questions about product sampling or nurse support available through the me+™ program, please contact us at 1-800-422-2211 or cic@convatec.com.  We look forward to helping you soon.

Editor’s note: This blog is from one of our digital sponsors, Convatec. Sponsor support along with donations from readers like you help to maintain our website and the free trusted resources of UOAA, a 501(c)(3) nonprofit organization.

References:

  1. DementiaUK, Caring for a person with a Stoma and Dementia. https://www.dementiauk.org/information-and-support/health-advice/caring-for-a-person-with-a-stoma-and-dementia/. Accessed November 13th, 2023.
  2. United Ostomy Associations of America, Inc, Dementia Stoma Care. https://www.ostomy.org/dementia-stoma-care/. Accessed November 13th, 2023.
  3. McGrogan M. How holistic assessment and appropriate product selection will enhance quality of life for ostomates with cognitive impairment. WCET® Journal 2021;41(1):33-35

Caring for the Caregiver

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By Ellyn Mantell

We are at that stage of life where so many in our world are dealing with issues that require care. All are in shellshock! Those who require help were frequently the backbone of their family, their community, their businesses, and suddenly, they need care.  Family members are called upon to play a different role, that of becoming the caregiver with little to no preparation. It rattles everyone, can separate and cause feuds in families, and can go in a very negative direction. But if everyone has their eye on the prize, that of supporting the one in need, there will be an amazing sense of camaraderie, and I believe, much more success. Now, more than ever, people need each other.

I want to share some thoughts with you in the event you or someone you know finds themselves in this situation:

  • Help to create a plan of action, logically and without emotion. Remember to focus on what is best for the patient (or one in need, but we will refer to them as patient) Ask professionals for guidance, but let them know your resources, financially, personally and physically. Bravado doesn’t have a place here…be open and honest. Nobody can do it all, and nobody expects that.
  • Bring family and close friends together and have open conversations about the direction being planned. It is dangerous to assume you know what others are thinking, and it is subterfuge for others to talk without involving you directly. Make it easy for family and friends to come to you, and do not put up a wall. Nobody benefits when that happens and too much time is wasted! Listen, gather information, keep an open mind, and then feel empowered to make decisions.
  • Keep a journal of what is happening to your loved one and yourself. Being mindful of the experience and noticing how you are growing and changing is valuable. It will help with each step you take. These things are most often a process, and not “fixed” on the schedule we desire. Additionally, for the patient, knowing what tests have been performed, the results, in one place, can be invaluable.
  • There are many resources available, but it is a minefield for those who are dealing with the patient. Ask a valued friend or family member to make calls on your behalf or help them navigate the internet. As an Advocate, I receive countless phone calls from family members and friends asking for my guidance. I praise those who reach out on someone’s behalf, and know the patient is so fortunate to have that type of loving concern.
  • Finally, although I could continue for pages, take the Caregiver to lunch, do something special for them, acknowledge all they are doing and the amount on their plate. Call, reach out and do what you can. This is such a trying time, and certainly, we are all aware of our vulnerability. Pay it forward and watch how it helps.

 

Ellyn Mantell is a UOAA advocate and Affiliated Support Group leader from New Jersey. This post first appeared on her blog More Than My Ostomy.