Jane has graciously asked me to share with her readers how my family is caring for my older sister, Margaret, who has Down syndrome. It’s one of the most common questions that people ask me when I go to speak to parent groups and seminars: “What will happen to your sister when your mother dies?”
To be honest, it’s a fair question. My mother is 91 years old, so folks wonder, how could she possibly still take care of an adult child with Down syndrome? And the answer is, it’s now a group effort.
Our father died in 1983, and since then, our mother has been Margaret’s confidante, caretaker, and as always, her lifelong advocate. Even when my father was alive, Mama was the one who took care of things; especially where Margaret was concerned. She continued to drive into her late eighties, and took care of all the household duties and bills. She drove Margaret to all of her social events, to the grocery store, to church, and even on short trips. People are always amazed when they meet her, marveling at how active, funny and engaging she is at 91 – she is truly an amazing person!
But, things have changed around their house now. Mama knew she needed to stop driving, especially at night, and the household chores were starting to overwhelm her. I called one night at around 8:30, and they were just sitting down to supper. When I asked Mama why they were eating so late, her response was, “I don’t know, I just couldn’t get it together.” I knew it was time to get her some help.
My brother and I talked, and decided that we needed to find someone who could help out on a daily basis with cooking, cleaning and driving Mama and Margaret to their activities and appointments. We were blessed to have a friend recommend someone, and now we have two wonderful ladies who share the duties. Brenda comes every morning, drives Margaret to her activities with the recreation department, and then comes back to the house where she cleans, fixes lunch, does laundry and takes Mama to the grocery store, the bank, or wherever she needs to go. Since Brenda already had a job in the evenings (taking care of another elderly person), we needed to find someone else who could work a few hours every night. Brenda knew of someone in her church that was retired and looking for a part-time job, so she recommended Marion, and she comes in Monday through Friday from 5:00 – 8:00 p.m. She makes dinner, cleans the kitchen, and takes care of anything that needs doing before they go to bed.
Mama and Margaret are still able to manage things at night, and on the weekends, as I usually go over on Sundays to spend the day with them and take care of the bills. I know there will come a time when they will need full-time, seven day a week help, but for now, our set-up works just fine.
I realize that I still haven’t answered the question of what will happen to Margaret when my mother is gone, and the truth is, we don’t have “a plan” in place. My mother and I have discussed it, but it’s difficult for her to talk about. I don’t think my mother ever considered that Margaret might outlive her. She feels responsible for Margaret, and doesn’t want my brother or me to “have to worry with it.” I have tried to assure her that this is no burden for me, and that I am honored to take care of Margaret; I only hope I can do as good a job as my mother has.
Two years ago, we set up a Special Needs trust for Margaret, so that any assets she has will be protected and not cause her to lose her government benefits. We also established guardianship so that I will become her legal guardian once my mother is no longer living.
What I hope for is that Margaret is able to continue to live in her home (which will go into the trust once my mother has passed on), and we will have wonderful people like Brenda and Marion to help out. Since I will be Margaret’s legal guardian upon my mother’s death, those decisions will be left up to me. My plan is, first and foremost, to do what’s best for Margaret, and to make sure that she continues to lead a happy and fulfilled life.
Associate Clinical Professor
Department of Communication Disorders