by Donna Swagerty Shreve
Our journey ended June 13, 2007 at 11:45 P.M. with me holding her hand. My sister held her other and we both gave her permission to let go. She had been in agonal breathing for 20 hours. Her death finally became a relief from her pain from multiple myeloma that was deep in her bones. The worst of her suffering for us was her dementia.
It took me a while to realize she was losing her memory. I had gotten clues and ignored them. Mom and I had a relationship that had its guard rails. She once told me she would not want to know certain things about me and not to tell her. I took that to heart and held personal things back from her. Mom was good about hiding what she did not want me to know about her, especially concerning her health.
Dad died in 1985 and part of Mom died with him. She was desperately lonely but never wanted to impose. I was married, raising two boys and working full time. I tried to include her on occasions but it was not enough to fill her void. She got reacquainted with a man she knew from Dad’s Rotary and he also had sold a home for Dad and Mom.
After a whirlwind romance, Mom married Warren in 1990. Looking back at their 17 years of marriage, I think they both went into the marriage expecting something more from each other that they were not able to give or receive. Mom was happy for about a year but then the veneer wore off and she was lonely once again. Unfortunately her new husband, Warren, was not well liked by the family, mainly because he was so pompous and it turns out, living off of Mom and contributing very little in the way of finances or emotional support. Mom told me she felt like a glorified house keeper.
I rarely invited them over as my family did not enjoy Warren. I usually did have mother over if Warren had a rare weekend trip to visit one of his out of town daughters. I tended to drop in on her on weekends when I was not working. That was when I received my first hints something was off.
I was trying to get her to exercise as she had been just sitting and reading books nonstop. She had been walking with several ladies in her complex but she found excuses why that was no longer enjoyable. To be honest she never enjoyed exercise. One of the ladies talked too much was the excuse she used. Mom was part of a bridge group that Warren had pushed her into joining. For a while the group functioned quite well. Then the few men in the group started dying off and Warren was the only male. He soon dropped out and left the group to the ladies. Mom dropped out of this group because none of the ladies would discuss baseball with her and she was tired of hearing about hysterectomies.
At first these excuses sounded feasible but you start adding them all up, I realized Mom was slowly isolating herself. My last clue was when she dropped out of her book club. Her excuse this time was she did not like the books that were chosen. We called Mom a bookaholic because she was never without a book.
She next gave me another clue when she said she had become embarrassed by what meals she was preparing for Warren. She claimed he never complained yet she realized her meals were what us kids used to call “barf meals” behind her back. I got proof when I showed up close to lunch time. She offered to fix me lunch. She was fixing a liverwurst sandwich for herself and another type of lunch meat for Warren. I watched her do her sandwich. The thing that was off was she did not use the usual bread for a liverwurst sandwich. I never ever liked liverwurst and raisin bread would never have been a combination anyone would use to apply mayonnaise and mustard. I asked for the same bread that she used for Warren and the other lunch meat.
Another time she offered to prepare a new recipe she had learned from Jane, her other daughter. She sliced tomatoes and added a slice of cheese on top and then put them in the oven on a cookie sheet. I ate in silence and later called my sister. Mom had left out some key ingredients starting with bread and some herbs.
My last and most obvious cooking clue was when we were making pies for Thanksgiving. Mom had made the pies for Thanksgiving for decades and this year the family was gathering at Rossmoor to accommodate the huge gathering. I knew Mom was slowing down and I could be very helpful as the chore of making many pies can be exhausting. Mom’s speciality was her crusts. They were so light and flakey. Mom started to mix the ingredients and it dawned on me she had forgotten what was needed. This was a task she had done forever and there were only four ingredients needed for the crust. I quickly put all of the ingredients together and had her mix it until it was the right consistency. After one round of making enough crust for one pie, she wanted to lie down. She took a small nap and then returned. We repeated this cycle of naps three times. Now there was no denying her dementia.
I got Mom on a waiting list for an adult community that had three levels of care. I could only get her into independent living at first. She lasted there 5 months before the authorities contacted me to recommend assisted living. Each new move caused stress which pushed her deeper into confusion.
I set up her daily pills for her for two weeks at a time. The pill container was left on her kitchen table. As I visited more regularly, I realized she was not keeping up on her pills. Her other children would ask if she had taken her pills and she would then take pills ahead of time. Once I realized she was two days ahead of schedule. I asked her husband to help and he replied it was too difficult for him. I also checked with a pharmacist to see what the result would be for an overdose of her medication. It is not good but also not fatal so I relaxed a bit.
When she was moved into O’Connor Woods, I hired a helper to take her to lunch and check her pills when I was not there to check. Mom was not pleased to be invaded by this person and put a stop to her visits. Isolation slowly creeped into all parts of her existence by her design. She could fake a normal conversation for about 15 minutes before she started repeating things or asking questions that did not apply to the moment. She somehow was aware of this and limited her contacts.
At first I tried to take her out to lunch with a friend. Getting off campus was a treat for most and I wanted to aid her friendships. The first person I asked to join us for lunch was a woman who knew Mom from their mutual first teaching assignment in Linden in the late 1940s. Her husband had gone to college with both Mom and Dad. Again I was given clues on the condition of her friend. Her husband dropped her off at Mom’s apartment and he asked if I would deliver her back to their place when they were done.
We arrived at a nice restaurant and they were both able to order without too much trouble. Mom had a trick of listening to what I ordered and then doing the same. I kept this in mind when I ordered. Soon the ladies were catching up on various aspects of their families. The friend asked Mom if she had any great grandchildren. Mom turned to me and asked me if she did. I took this as a compliment because she felt safe enough to ask me in front of her friend. I then named off all of her current great grandchildren. Mom returned the favor and asked the same of her friend. Her friend replied that she was not sure but if she had any it would be from her oldest. I then knew for sure that I was having lunch with the dementia twins. They both seemed to enjoy the experience and had somehow felt safe with each other. I tried two more times with other O’Connor residents but not with the same results.
Soon Mom was moved to assisted living. I noticed she seem to relax because her medications were now taken care of along with three meals a day. She recognized that there were many residents in similar condition. Her husband was quite upset with the move but reluctantly joined her. Finances were a factor for Warren and he could not afford to live by himself and continue his lifestyle.
While she was in assisted living she had a table right next to a retired priest. He told many stories from his service in the church. He also provided some sacraments for some of the Catholics residing in his building. The staff had replaced any candles he used with battery powered candles.
Mom mentioned several times how she was so entertained by the priest’s stories he told to his three lady companions at his table. Warren replied after this comment by Mom, that it drove him crazy because the priest kept repeating the same stories over and over. Mom had not noticed.
I was now retired and I made sure to drive Mom to her weekly hair appointment and all doctor appointments. She had given up her car and Warren was still driving. I worried about his driving and did all I could to keep her out of his car. He recently had been involved in several fender benders. On one of my trips to the hairdresser, Mom mentioned that the “flashing lights” had come back. It is 7:20 in the morning and I see no evidence of any flashing lights. I remained calm and asked Mom how often this occurred. She replied that it happened every so often. Not helpful. I then asked her how long the lights lasted. She said about 15 to 20 minutes. Also she mentioned that I had a halo over my head. I made a joke out of that and we both chuckled. When we got to the hairdresser, I asked for a glass of water as I had Mom’s pills for lunch which included an aspirin. I thought an aspirin could possibly help the effects of this mini stroke.
We usually came to my condo after the appointment and she would enjoy sitting in a chair that faced my wall full of family pictures. She would stare at the pictures of Dad. I had also started my one and only scrap book of Mom’s life. Each week I added a few more pages. She would go through the book each week as if it were brand new to her. Sometimes she recalled stories from her childhood that a picture would evoke. I actually heard a few new stories and I thought I had heard them all. The scrap book was also my way to capture some of Mom before she disappeared all together.
Mom and Dad had taken various exchange students into their home when they had an empty nest. One of these students had been Candy. She became a part of the family and we have kept in touch throughout the years. I wrote to her and told her if she wanted to visit Mom that the sooner the better. Candy arrived and stayed with me in the condo. I had planned a lunch with Candy and Mom and dinner later.
Candy and I picked Mom up and she gave us a grand tour of her one bedroom apartment in assisted living. We then took her back for lunch at my place. Mom was already done. She wanted to go back but I got her to stay for lunch. I then quickly gave up dinner plans and returned her to her safe place where I am sure she went directly to the bed for a nap.
I had moved all of her books and book cases to her tiny apartment in assisted living. The books were her friends and she could not imagine giving them up. Her one wall was covered with four tall bookcases filled with fifteen boxes worth of her favorite books. My sister and I had actually gotten her down to only four bookcases. Sadly I soon realized she no longer read any of the books because she could not remember what she was reading. I started bringing her magazines that she could flip through and read small segments and look at the pictures. Warren called and told me to stop bringing the magazines as she was not throwing them away. I suggested he throw them away and I kept bringing them.
The next stage that hit Mom was her hygiene. She religiously had taken a daily bath. The apartment in assisted living did not have bathtubs as they are a safety issue with older and confused people. There was a walk-in tub at the facility but the resident would need assistance. Mom was a very private and modest person and this was a no go. I requested that they help Mom with a daily shower. She refused to comply. She now relied on what we called a cat bath. Needless to say this was not sufficient.
Mom was quite a dresser. Warren had once remarked that Melva dressed up to take out the garbage. After the children had left the nest and she had extra money, she spent it on her wardrobe or traveling. She also believed in retail therapy when she was feeling down. Getting her to trim her closet was a horrible fight. I gave up and got long wardrobe plastic bins that were stored under her bed. I rotated them out and into the closet depending on the season. Now she was wearing the same outfit over and over.
A laundry service was provided but the resident had to put their soiled clothing into a special bin that was picked up in their apartment and returned laundered and folded. Mom was beyond learning a new skill and never used the laundry bin. When I asked her about it, she replied she could not find the washing machine or dryer. Again Warren was not willing to help even though he used the service.
I tried putting labels for each day of the week on her hangers. This did not work as she was not aware of the day and could not learn a new system. I then would go through her closet and take out soiled clothing and wash them myself. I did not go through her underwear.
Another issue was Mom’s toe fungus. It became so severe that she lost her big toe nail. It actually came off. I took her to a podiatrist and he suggested sandals in the summer and no more nylons, only socks. We shopped for sandals but Mom would not wear them. She also would not use socks as they did not go with her stylish shoes. When I caught her with knee high nylons, I insisted she hand them over and I would dispose of them. I also took her to a manicurist for her toes. I got a fungus medication which the staff would apply to her toes nightly. She actually had much improved toes but I never was able to get rid of all of her nylons. After she died, my sister and her daughter went through all of her clothing and removed them. Hidden in various drawers were stashes of nylons. I never figured out how she acquired the extra pairs. Warren swore he did not buy any for her.
I noticed a change in Mom’s demeanor and obvious weight gain. I was scheduled to take a trip to New York City on a Friday for an important event in my son’s life. I took Mom to a doctor’s appointment the previous Wednesday. The doctor went through her vitals and said she was fine. With trepidation I flew to New York. At 2:00 A.M. I received a call from an emergency doctor in Stockton. Mom had been taken to the emergency room and after 5 hours of waiting and being checked, she wanted out. The doctor was quite irritated with her and wanted my permission to release her. I had the power of attorney for medical decisions. The only thing the doctor had not done was an MRI. All of her vitals were stable. Mom was released to John, my husband. As soon as she returned to her residence, the ambulance was called once more. She was unable to walk.
I received updates on Mom’s condition from my husband, my sister and a dear friend. The doctors were puzzled by what had caused a tumor to break through her spine. The bottom line was she needed an operation to stabilize her spine. The thought was they would shrink her tumor and give her therapy to walk again. They sent a sample of her tumor to Stanford University to determine its type. Two weeks later Stanford decided she had multiple myeloma. At the time it was quite unusual but fatal.
I debated with my siblings about subjecting Mom to an operation, but in the end we went along with the doctor’s recommendation of stabilizing her spine with two rods. Mom was now in a nursing home as part of O’Connor Woods complex. Now I was with Mom daily both in the hospital and then in the nursing home. At the advice of a friend, I took a journal with me to each visit to record what happened to her each day. The extensive journal came in handy when I went into the director after Mom had been dropped and allowed to fall twice by the staff.
Mom’s biggest indignity was having to wear a diaper. She went to great lengths to convince the nursing aides to help her to the bathroom. If the aides had read her chart, they could have avoided the disaster. Using the journal I was able to mention calmly certain incidents that had happened in the nursing home. Mom’s care improved after that.
One of Mom’s physical therapy people called me in for a conference on a Monday. He informed me that Mom was no longer improving. I took the news calmly because I certainly had not noticed any improvement. He then mentioned that Tuesday was Medicare review day. Again I took in his statement without reacting. He had to explain that because Mom was not improving, she would no longer receive Medicare payments or even her health supplement. The quite expensive daily rate would kick in Wednesday. I had no idea how Medicare worked. I immediately called in hospice. They came in that same day and washed her hair and switched out her bed for a better one that was more effective for avoiding bedsores. When I mentioned I had called in hospice, the usual attending nurse was so relieved.
I asked the nurse why she hadn’t told me that Mom needed hospice. She said she was not allowed to mention it to me. Now Mom’s medicines switched and her comfort was the primary purpose. Before this I had to watch very closely and tell the nurse when the pain patch was not enough of a dose. The nurse then relayed this information to the attending doctor who visited once a week. He then prescribed a stronger dose. I was the attending the doctor!
Wednesday morning I walked in to find Mom in agonal breathing. It is quite disturbing to witness. Each breathe is truly agony. She had been in this condition for several hours before I had arrived. I immediately called my brother and sister so they could be at her bedside if they wished. My sister made arrangements to come as quickly she could and my brother planned to arrive the next morning.
The next hours dragged on and I became so tired, I was in a loopy exhausted state. My sister arrived 45 minutes before Mom passed. We sat on each side of her bed and coaxed her to let go. Finally at 11:45 at night she left us. I realized we could be charged for another day if we lingered. I emptied the closet and my sister got her dresser. We made it out of her room just before midnight. She followed me home and we were both in a daze and greeted by my husband who was waiting for us. I realized I had a good salve and put in the DVD of Mom’s life that my nephew had just completed the previous weekend. The three of us sat on the sofa and watched the video celebrating Mom’s life.
Our brother arrived the next morning and the three of us planned her service and divided up the various duties that are necessary at the end of someone’s life. Mom had done most of the work for the service and obituary and I do believe she would have been pleased with her service. A year later we were able to scatter her ashes at sea in another ceremony she would have enjoyed. Taking care of a dying parent is quite stressful but looking back I am thankful I was able to be with my mother on her last journey.
3,675 words
3/15/22
Swagerty-Aldrich Family Web Site 
Beautifully written with love and compassion. My sister and I are currently on a similar journey.
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