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Supporting Mom

Marcia Martin

Last June at the Oley Conference, I gave a brief talk on the role of the support person. At that time, I was brand new to that role. My mother, who is 81, had just finished a 3-week hospital stay due to infection. She had also been switched to enteral support after 20 years of parenteral nutrition. I realized that, upon discharge, she would not be able to return to her home and live totally independently as she had for the last 3 years. Previously my father had been her support person.

At a minimum, she would need time to get her strength back and have to learn the routine of the enteral set-up as well as she knew the parenteral routine. I live three hours away from my mother, so just daily checking in would not work; Mom and her cat, Sam, came to stay with my husband, Joe, and me, and our four dogs.

 

A New Routine

During that initial period we all learned the mechanics of mixing Mom’s solution and hooking up. Joe labeled two containers with brightly colored lines at the 1000 and 1500 ml levels. He wrote out clear directions in large print and had them laminated. We all learned to recognize the machine’s beep in the middle of the night, how to add fluid to the enteral bag when half asleep and the special quirks of each pump. I learned how to give IM magnesium injections, how to snap together those Tupperware™-type connections on an ostomy bag and how to get my mother’s mail order prescriptions. Sam the cat learned to live with four dogs.

My mother insisted that we not do everything for her. She was concerned that she might forget how, so we observed as she mixed and hooked up. The more she did it, the better she got. By the end of the summer, she was mixing her solution and hooking up quite well. Mom also pitched in to do dishes, vacuum and change the kitty litter. She raved about Joe’s cooking. From April until September, my mother and I took walks every day. We planted and watered boxes of petunias and impatiens. We sat out on the porch and marveled at how close the hummingbirds came to us when they fed at our feeder. As my mother got stronger and into the routine of doing her own enteral support, she longed to return to her own home. She has many friends in her hometown, as well as three brothers and their wives, whom she sees a lot.

 

Balancing Independence, Safety

Balancing my mother’s desire for independence with keeping her safe and healthy is a major challenge. My sister, brother and I felt that returning to live alone in her home was not the best idea, but we did agree to look at the various senior living options. We looked at some in my town as well as several in my mother’s hometown. We found that there is no perfect solution and all are expensive. It would have been much easier if my mother and her three children all lived in the same town. My mother chose an independent living facility in her hometown. They provide one meal a day as well as light housekeeping and an emergency call bell. She has a lovely apartment and there is a wide array of activities available. If she ever needs it, they have assisted living and a nursing home on the grounds.

Recently, we have arranged for aide services each evening to insure that my mother mixes and hooks up appropriately. Mom does the actual mixing and hooking up, but the aide can prompt her if necessary. A nurse comes one evening a week. My mother says that this is overkill, and it may be, but I tell her that it puts my mind at ease. The most difficult part of this is coordinating the aides with my mother’s numerous evening activities so that she is present when the aide arrives.

I visit once a week on average, and continue to order my mother’s medications and fill her pillboxes; although, when I visited last week, she had done this task already. I let her medical supply company know what supplies are needed each week, and accompany Mom to doctor’s appointments so two sets of ears are hearing what the doctor says. I call each morning to find out how things are going and what the plan for the day is. I call my current role “long distance support person.” Right now, this is working.

Probably the biggest thing that I’ve learned this past year is that nothing is forever. My tendency is to put a plan in place and make it work, no matter what. In this situation, I’ve learned that flexibility is a must. I have also learned that I am part of a team which includes my husband, my brother and sister and their families, my mother’s doctor and the people at her homecare company.

Editor’s note: “Mom” is Eleanor Orkis, one of the earliest Regional Coordinators who led a support group in upstate New York for nearly 20 years. She has helped at many Oley conferences and at the Oley office. We admire Eleanor for her fun-loving, warm and generous spirit, as well as her energy and enthusiasm for trying new things. We thank her for her continued dedication to helping others on homePEN and for sharing her wonderful family with us.

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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