The Commission on Affordable Housing and Health Facility
Needs for Seniors in the 21st Century
November 7, 2001
Looking Back and Looking Forward
My Experience with Affordable Housing and Health Facility Needs
For Seniors in the 21st Century
This is just one of a million stories. Ten million. No more horrific or less heartbreaking than all the others. But it's mine. And it's also my family's experience. We all went down this road together. Unprepared, but armed with love and dedication. It was a six-year journey that brought something new for us to deal with everyday.
Let me back-track for a moment. My darling mother, Margaret Caroline Struthers (known as "Mother Struthers" by all of my friends), was an extremely bright, lively, clever, humorous woman born to Norwegian immigrants in 1917 in Portland, Oregon. Mom was the third of four children: she had two sisters, one older, one younger, and a brother. She married my father, Robert Alden Struthers, and worked to put him through medical school. They had two daughters: my sister Sue and me. My father left when I was nine or ten and though difficult, my mom did an excellent job of raising us alone. Single parenthood was not as prevalent in the 1950's as it is now and it made my mother very sad and ashamed to be divorced. But she went back to work for the Federal Government and rolled up her sleeves and turned out two, what I'd like to think of as, decent young ladies.
Now, I'll move the story forward to the year 1990. Mom was in dire need of major abdominal surgery and I flew to Portland to do my share of hospital sitting. My sister and I took turns with our two aunts, Yiya and June. (Yes, I said "Yiya." She was given that name by my sister because when Sue was learning to talk she couldn't say "Ida." It came out "Yiya." So for 55 years now my 88 year old aunt has been called "Yiya.") During my mom's hospitalization, my sister and brother-in-law and I decided to completely redecorate mom's bedroom so that when she came home she would have a lovely surprise. This relatively easy undertaking became huge; the beginning of our odyssey.
Mom had been a meticulous housekeeper her entire life, but upon entering her home we quickly realized that it was far from clean. And everything, I mean EVERYTHING, was covered with an orangish/brown coating. Her years of smoking combined with not opening any windows or doors for fresh air had colored the walls, ceiling, and furnishings with nicotine. So instead of just a quick re-wallpapering of her bedroom, we now enlisted the help of everyone in the family to wash or clean everything in the house from top to bottom. When we were ready to start the wallpaper job, we needed to empty out her bedroom furniture to the living room. The dresser was too heavy to move intact, so we pulled out the drawers to move them first. We could not help but see that these drawers had many small pieces of paper floating around in them with notes that said things like: "Today is April 3rd," or "Monday is the day after Sunday." Evidence of confusion. But the most devastating papers were notes she had written to herself using information from the Hemlock Society on how to commit suicide. What drugs and amounts were necessary to do the job.
Sue and Craig and I were stunned. Margaret Struthers had apparently been losing her memory for some time now and had successfully hidden it from all of us. Obviously not wanting to be a burden, mom had written to the Hemlock Society for information on ways to die. These notes and papers revealed to us that she was suffering and dangerously depressed.
We all went into over-drive. Since my mom was so beloved by all of her family, she had a soft place to fall. My aunt Yiya wrote to our family in Norway and subsequently discovered that at least one first cousin of theirs in every family of my grandfather's nine brothers had died from or was living with Alzheimer's. The family pulled together and attempted to care for and shore up my darling mama. This six-year assignment was at times humorous and much too often devastating. My aunts and uncles were in their 70's and 80's. This was an exhausting watch for them. Mom set the house on fire when she forgot the process of being a smoker. We had to take her cigarettes away. We had to take her car keys away when she couldn't remember how to get anywhere. We got her anti-depressants but she couldn't remember to take them. So--my Aunt June tried to lace them into her food. Mom wandered away from home and got lost. Twice! We got her an ID bracelet and permanently locked the front door. She could go out the back door (which she did most nights repeatedly...waking up my Aunt June and Uncle Walt by knocking on their back door), but couldn't go far because of her special family compound set-up. Mom's sisters lived on either side of mom's house. Three houses in a row. Therefore, all three homes shared one open backyard. Open access to the back of all three houses, but not open to the world. This way, mom could roam outside all night if she wanted, but not far.
As her disease progressed, her care became more and more of a challenge. She didn't bathe and forgot how to properly handle simple bathroom procedures. My sister drove over to mom's a couple of times a week to give her a shower and clean her house. My aunts and uncle had to monitor her around the clock. Every trip I made to Portland became more difficult to handle emotionally as I discovered each time how much worse mom had become. She forgot to eat. She forgot our names. She forgot almost everything she ever knew.
Margaret Struthers' last four months on earth were the final blow. Mom became a health hazard to herself and us. She would not let us bathe her. She would not change her clothes. There was excrement under her fingernails; hepatitis just waiting to happen. She became ill. My family needed to get her to the hospital. In the attempt, she became combative. My poor sister. My poor uncle. My poor mom. They finally had to trick her into thinking she was just going for a ride. She was out of control when they had to leave her at the hospital. During this hospitalization, mom remained combative; a step many Alzheimer's patients reach. The staff informed us that we would no longer be able to help mom at home. We were prepared to hire home health care nurses, but were told that they are not trained or able to deal with the physical threat of a combative patient. So this choice was out of the question.
Therefore...our QUEST. The quest for a perfect place to house our wonderful mom. Our bright, funny gal who had been reduced to the very thing she feared would happen those six long years ago. My sister Sue became the investigative, tireless champion that my mom needed. She went all over the Portland area with a friend of hers, an RN, to see what there was to offer in the way of housing. Money was not, at the moment, an issue. Mom had some savings. She was not dependent on the State or Federal Government. This would lead anyone to believe that we could, therefore, find a lovely place for her care. With her savings, she would not be a Medicaid patient...yet. We knew eventually she would spend down her assets. Lose her home. With just enough left for funeral costs, she would then be eligible for Medicaid.
The Alzheimer's Association suggested places to look. Friends told us of facilities they had used or were aware of. After a lot of research, on site investigation and proper questions asked by Sue's RN friend, my sister finally settled on a place. The best she could find. The best of the worst. It was huge. It was divided. Medicaid patients at one end. Private-paying patients at the other. Not much difference between the two anyway, but it was the cleanest and safest choice of everywhere my sister had looked. It was a warehouse, as it turned out. Nothing more, nothing less. Understaffed. And, as we quickly realized, not a particularly safe or nice place for our mom. She shared a room with a very difficult patient. The staff lost her teeth. They lost her clothes. They couldn't monitor the wandering of all their patients. So, mom would mistakenly walk into rooms of male Alzheimer's or Dementia patients in an attempt to lie down and she would be battered and bruised because these men were larger and combative too. We went to visit her everyday. She was far from forgotten. But even with being a "paying customer" and our daily vigilance, her care was random, sloppy, unacceptable. It was simply heart-breaking. Nightmare material. So the quest continued. My sister continued to call, read, research any and all opportunities. Sue heard that a place was soon to open. Designed specifically for Alzheimer's and Dementia patients. A place that would be called St. Aidens--built and owned by a non-profit group called Legacy. A true state-of-the-art home for this ever-growing number of seniors who require special care. While we waited for it to open, we went out to tour the facility and then went on "begging" mode to secure mom a place. I promised them my first born. My sister became a Board Member. We were, to put it simply, desperate.
St. Aidens finally opened its doors in November of 1996. It was truly wonderful. It became a benchmark for more places that are now up-and-running five years later. Certainly not enough of them to fill the needs of our enlarging senior population, but at least a few more than there were before. There were four "households" in this facility. Each housing ten patients. Each patient had their own room. And each patient's room was decorated with furniture and accessories from their own homes. So my mom had familiar comforts around her. And the best part: A memory box outside each individual's door. A glass enclosed, lighted chest with shelves holding family photos, mementos, and small personal items that each patient could recognize...enabling them to find their own room. Completely thought out and safe for "wanderers." Carefully and generously staffed with experts in the care of our loved ones. It was as close as one could hope for to "being home." Mom only lived there a month. She succumbed to pneumonia two days before Christmas, 1996.
My family and I realize that within this nightmare, we were some of the "lucky" ones. My mom could be cared for by her family until nearly the end. She/we had the resources to scour the area for the best housing that existed and I had the fame and relentless persuasiveness to help secure a place for mom in the coveted St. Aidens Home. We didn't know that she would only be there a month. It was her last month of life, but a month for us with some relief and comfort. A month without guilt and worry.
We have been told that female offspring of Alzheimer's victims are the most likely to be struck with the disease. So my sister and I pray everyday for a cure or a vaccine so that we won't be a burden on our children. Or on society. At the moment there is neither on the horizon. We are both in our fifties and are soon to be the Seniors of the 21st Century. We now worry about our future; our care. Steps need to be made immediately. It can't happen soon enough. Too many suffer--being left without adequate care, choices; without dignity. It's obvious what needs to be done. Sleeves are just being rolled up at a snail's pace. Apathy needs to be replaced by fierce determination.
Thank you for hearing my story.