THE UNFINISHED LIVES OF THE
BY R. B. STUART
BY R. B. STUART
My mother had a stroke several years ago leaving her 70-year old body paralyzed on the left side, and wheel chair bound for the rest of her life. It wasn't until then did I realize how much I loved and cared for her. Our mother/ daughter relationship had an invisible strain for nearly 30 years of my life. And out of the other four daughters she bore (and one son), I was the one she neglected and ignored. I'd often ask myself, "Why doesn't she love me like the others? Is it because I resemble her mother?" Later, when I found the courage to ask, she'd refute the claim. But how does a child reason away the pain of not being unconditionally loved and treated equally by one's parent, their beloved Mother.
In retrospect I have found her stroke to be a blessing, for as it paralyzed her---it also cracked our hearts wide open giving us the ability to finally love each other as never before. Although, it didn't happen immediately. It was during the first year of living life from a seated position; the new form of her physical body was unknowingly ravaging her once active spirit, and casting a shameful shadow over her Soul. For she was now disabled---dependent on others to do what she so effortlessly did for many years.
Years after my father died my mother relocated to a remote New Hampshire town, which she eventually came to adore. She lived alone in a small subsidized one bedroom apartment for the elderly. Her six children all grown, living their lives independently across the 50 States, corresponded regularly by telephone and bi-yearly visits. Her facade of, "I'm doing fine," with each conversation was a lie we'd uncover a year later upon her relapse. Unknowingly she'd spent the year with her new companion the television, and by her side comforting her, a "pet" bowl of chocolates or ice cream. Surviving being shut-in, locked away from life of the healthy taking place outside. A life she so recently participated in herself, only to struggle daily in her new "half-dead" body, as she called it.
So when I received the telephone call from my sister that Mum had a relapse. The Doctor conveyed that she had Congestive Heart Failure and was intubated (oxygen tubes inserted up her nose and down her throat) and in I.C.U. And it would be wise for the family to come at once for her days were numbered. We all dropped our lives and flew home. I was the first to arrive via New York City. My eldest sister from Boston another from Florida, and one from San Diego would arrive the next day.
My mother laid fully tubed, hooked up to oxygen, nutrition and catheter. Drifting in and out of consciousness from the constant Morphine injections to relieve the discomfort caused by the intubation. Her Mothers ring, a ten karat oval Ruby and gold nugget ring had been cut off in the emergency room. Her fingers and body swollen with 60 pounds of weight from the year of sedentary living and poor eating habits. Insulating and anesthetizing her from life as a cripple. The only other time in her life that her rings were cut off was in the delivery room. Seeing her hands discolored with bruises and swollen, tied down to the bed with cloth straps to keep her from pulling the tubes out, still soft to the touch with a motherly air about them.
Once my sister's and aunt arrived, we held daily vigils at the hospital. Watching Mum drift in and out from her drug induced haze. We stayed at my mothers apartment and spent nights shuffling through her personal belongings, claiming some as our own. With our aunts guidance we learned the business of death. We placed an account with The Cremation Society, my baby sister, a Navy chaplain wrote an obituary in preparation for the day Mum would expire.
Between our sobs and fear of losing Mum we rekindled laughter from the joy of everyone except for my brother, home. Crammed together in Mum's apartment, we nestled in bed and found daily amusement from the previous nights bout of manly snoring and flatulence. We were finally able to make light of our foibles and idiosyncrasies acquired in adulthood, even still nuzzling up to one another like a litter of snow white kittens. Feeling the tickle of my sisters hair pressing against my face, the scratch of her toe nails against my calf, the warmth of her breath, her womanly body crowding me like a blanket. We found one another again---in the mist of losing our mother.
One night I came across a grey scrap book. I opened it to find the pages pasted with cards, letters and pictures of me. I was taken aback. Had she loved me all along? Each page was a moment from my life in New York City. Mum began the scrap book in 1989 when I moved from Boston, venturing to the city in lieu of the dream of becoming a Movie Star. How could it be? Why me? I flipped each meticulously glued page pasted with my greeting cards and post cards from over ten years. There it was, years of my life cataloged by the loving hands of my mother. Caressing each page with her hands as she glued them in---spending private hours loving me.
Because of my sour childhood so many years passed with hidden anger and resentment towards her and women---but it all seemed to vanish in between the scrapbook and hospital room. The thoughts of never seeing her again and becoming an orphan loomed overhead. For it was Mum that always brought us home for the holidays. What would happen to us as a unit without her presence? Even though we were all in our thirties and forties, fully grown adults, underneath we were still her children, and as children, still loving and needing their mother.
As the days wore on we lit candles and prayed. The doctor in-charge wanted a conference with us about Mum's health. The discussion brought to light my concerns about the intubation and Morphine. It was impossible to converse with Mum without her eyes rolling back nodding in and out of consciousness. We never knew if she was slipping away into the death state or simply "high." The doctor's only concern was Mum's adamant request of "Do Not Resuscitate" written on her chart. She felt as if Mum was depressed and suicidal. I was appalled at her assumptions, since Mum drilled into us from childhood that she didn't want to be an invalid in a Nursing Home. She'd much rather be in Heaven with her beloved husband and daughter. So we suggested after a certain amount of time we would take her home to die peacefully in her own bed with her children around. The doctor agreed but only after she came off the oxygen and spoke to Mum about her depression, "Do Not Resuscitate," and prescribe her anti-depressants.
As Mum stabilized the doctor slowly weaned her off the oxygen and Morphine. So slow in fact, we had to leave. After seven days we decided to go back to our lives and work---leaving the eldest to remain by Mum's side and in charge. We expected the phone to ring any day. And it did the afternoon we returned. The doctor conveniently removed the tubes the day we left and started her on anti-depressants. The doctor said, "Besides your mothers throat and nostrils being sore, she's sitting up eating ice cream recuperating. I asked her about the resuscitation and she insisted she didn't want it." Without saying I told you so to the doctor who claimed to know my mother better then me. I took satisfaction in my mothers flat out refusal even on anti-depressants to stand her moral ground. Unknowingly my mother remained on the mood elevators and the depression symptoms the doctor perceived, were scribed in her medical records.
When my sister told Mum of the week long vigil she was barely able to grasp it, as if she woke from a dream. Within a week Mum was transferred to a Rehabilitation Center for three months of rehab. My sister went back to her life in Boston. During her days at the rehab her new doctor followed the previous doctor's notes and continued to treat Mum as depressed. Adding anti-anxiety pills to help her with they believed was nervousness, my mother like Edith Bunker was naturally dramatic, high strung and a worrier, it was nothing new from the stroke or relapse. Adding a pill at night to help her sleep, one more for her leg cramps, another because she felt itchy. The doctor's provided a Band-Aid treatment of pills to soothe her every complaint. By the time Mum was discharged she was up to 22 pills a day. The new and unnecessary ones would within weeks and months become so toxic, she would be ready for a Nursing Home.
They discharged her under the condition that my sister be there 24 hours a day. My sister had the time and the experience to handle such a request and it was during that period did she observed my mothers physical and mental decline. Not only did Mum return home wearing diapers but a new host of fears had been instilled: from the fear of wetting the bed, to choking, falling, drowning in the tub and rolling off the bed. She could only swallow pills if they were crushed and smothered in apple sauce, she now needed a straw to drink, her food had to be cut into baby size portions. These new crutches had developed while she was in the hospital and inrehab.
It was after my sister witnessed Mum looking out of the window in July at the snow. Then telling my sister to be quiet so she didn't wake the baby sleeping on the couch. At another time asking when the kids were coming home for supper. She'd ask my sister if she was going shopping at "Spags," a store Mum shopped at 30 years before when we lived in Massachusetts. My sister asked her where she lived. Mum replied with the address in Massachusetts, the house we were raised in. My sister realized something was gravely wrong and relayed these conversations to me. In turn I quizzed Mum by phone where she failed terribly. With the instances mounting we began to believe Mum had finally developed Alzheimer’s, just as her mother had.
With Mum's physical energy and mind deteriorating, my sister advised more rehab. After a family conference and with her doctor's referral we placed her in another rehab with a nursing facility attached. Mum was leery with our request since it was a rehab wing of a nursing home. But we insisted she need a few more weeks of strengthening. She complied. Her medical records were requested from the hospital and former rehab to the new one where she would be assigned another team of doctor's. She was doing great until they gave her a T.B. test which catapulted her into bed with vomiting and diarrhea. Further weakening her and setting back her progress. When I spoke to the doctor in-charge he started spouting off to me my mothers angst and nervous behavior. I insisted it was her nature, he disagreed. Adding that he prescribed other anti-anxiety pills and increased the milligrams to her sleeping pills. I requested that they be discontinued. He stated she would need to be weaned off them gradually. When we hung up my mind started to click.
I called the nurse in-charge and asked her for the list of Mum's daily pill intake. When I scribed the 25 pills I was aghast to find her on the same pills I took recreationally 10 years before. I wondered, "Are Mum's hallucinations, excessive fears, sleeplessness, itching and dry mouth caused by the cocktail of pharmaceuticals she's on?" I walked to my book case and plucked the P.D.R. (Physician’s Desk Reference that doctor's are suppose to use when prescribing drugs) off the shelf and sat down for hours reading and cross referencing the adverse side effects, precautions and overdose symptoms from the pharmaceuticals Mum was ingesting willingly, every day. The more I read the more it was apparent, that her symptoms were in fact drug induced and not physical, emotional or psychological. I was irate, overwhelmed and on a crusade to rescue my mother from the unsuspecting hands of the trusted men and women in white.
Of course no one would listen to the hysterical daughter calling from New York. Not my sister's, the doctor, nurses, or social worker. Everyone was in agreement that she was never going to recover and I must accept it. Their recommendation was that she be placed there permanently. I defied and was desperately out of control, a wild horse kicking and bucking at the corral of limited thinking that was penning me in. As they tried to rip my mother from my arms, I clutched tighter. For this was the only mother I will ever have. I pleaded, "We cannot ignore her ingrained wishes of never being committed to a Nursing Home. As her children we owe her that." I whaled, cursed and sobbed over the telephone to these people in authority over my mothers life.
It wasn't until I convinced my brother, then my sister in Florida who was Mum's Power of Attorney, that it was the drugs and NOT Mum. They gave me the reins to do as I see fit. I knew we needed legal advice so I called New Hampshire Social Services, the Ombudsman’s office, Legal Aid for the Elderly and lastly the hospital where her personal doctor's worked and the reputable rehabilitation facility she graduated from on her initial stroke, C.M.C. I passionately pleaded for their assistance and discovered my case wasn't uncommon. With legal support, an appointment scheduled with the Director of Rehabilitation, my backbone in place I hatched a plan: I would fly there have her sign out A.M.A. (Against Medical Approval), get her off the mind altering drugs and take her to the director for an evaluation. It had to be done clandestine without Mum, the nursing staff, doctor's or social workers knowing. I deliberately withheld the plan from my elder sisters who were in agreement with Mum's nursing home placement.
When I arrived in N.H. I contacted the legal team and planned the next day to execute my capture. At nine the next morning my sister in Florida called Mum to tell her she withdraws as Power of Attorney and to change it to me. And when the doctor comes in tell him your wishes. She then called the doctor in-charge telling him that she is no longer in control, I am. They had created many roadblocks for me since I wasn't the Power of Attorney, at times refusing to speak with me regarding Mum's health. That wouldn't be the case any longer. Their nightmare was realized, I was in charge and in town. At 9:45 A.M. I called the nurses station to tell them I was in town for a visit and wanted to take Mum out for a day pass, to please have her ready. The legal team was standing by in case I had problems, then the big-guns would arrive. The leering eyes from the staff cloaked me as I walked down the corridor. When I entered Mum's room much to my dismay she was still in bed with an oxygen mask on, a nurse by her side. The nurse spoke for my mother telling me she couldn't go because she had trouble breathing this morning and needed to be monitored. Maybe in a few days she'd be better.
The blood coursed through my body as the nurse tried to throw a wrench into my plan. She prompted Mum to take off her mask to tell me the same. I looked at the nurse and asked her for some privacy. Reluctantly, she left the room. I leaned into my mother's face and in a quiet but forceful tone said, "Mum the family knows that I'm here to take you home. But I need you to tell the nurse you want to leave A.M.A." She responded, "But I don't want to leave. Didn't the nurse tell you I need to stay here on oxygen." With a deadly stare I leaned in once more with an ultimatum, "Mum, if you don't leave here with me now, you'll never see me again. Because you'll die in here, they're killing you." Just then she said, "Okay. I'll go." I retrieved the nurse and Mum told her that she wanted to leave A.M.A. The nurse replied, "Are you sure? You know we like having you here." I blurted out, "She already told you she wants to leave A.M.A. How many times does she have to say it!" With that the nurse abruptly turned on her heel and walked out.
I told Mum we were going to the emergency room of the hospital where her doctor's were affiliated and from there we'd go home. I quickly ransacked the drawers and closet, cramming her personal property in the overnighter and plastic bags. The nurse returned with forms for Mum to sign and asked where we were going. My throat tightened, the nervous energy of uncertainty consumed my body. I wondered if they were going to prevent my attempts at saving my mother. Mum replied, "To C.M.C. where my regular doctor's are." The nurse informed that the ambulance will be here to transfer you. Within moments the emergency double doors opened and two E.M.T.'s entered with a stretcher. They took the paper work from the nurse, put in on my mothers lap, hoisted her over to the portable bed and whisked her out the doors into the ambulance. I passed by the nurses station for a copy of her med. sheet.
My strategy was to reassess her medicine with the E.R. doctor and take her off all the unnecessary ones. They of course couldn't locate her chart, claiming it already went downstairs to the archives. I had them copy it from the wall chart. With the scrap of paper in hand I walked down the corridor passing the others parked by the walls, slumped over in wheel chairs, unconscious and over medicated. The last stop before dying, the unfinished lives of the elderly.
I put her clothes in the car trunk, jumped in the front seat and a sense of relief washed over me, I headed for Mum. When I arrived at C.M.C. she was off the oxygen, hooked up to a heart monitor and ordering lunch. The E.R. doctor was running tests and assessing her health. I explained about the excess prescribing of drugs and handed him her medicine list. He shook his head in dismay, "She has Congestive Heart Failure her breathing is already compromised. Some of these pills repress her respiratory system even further. She doesn't need to be on most of them." Finally a doctor who understands. Hours later he said she could go home, there was no need to keep her. He gave me the most pertinent prescriptions, which totaled to four. Four pills from 25, amazing.
In a wheel chair we maneuvered to the parking lot, a waist belt wrapped around her for safety she pivoted into the car. While we drove I explained the course of events that occurred between me and the others. I let her know about the appointment with the director of rehabilitation for an evaluation. In hopes drug free, she'd be a good candidate for their program. She was astonished at all the goings on. I turned to ask, "Mum why were you so reluctant to come with me?" Frankly she replied, "I thought "you" Bitches were trying to commit me to a Nursing Home. Because I knew I was a Bitch to you children growing up." I was dumbfounded and saddened by her candid insightful remark. Because after years of ridicule she finally admitted she wasn't a very good parent. Even though, how could a mother think her children would act in any other way then with love and compassion to the woman who bore them? It saddened me to think she truly believed we harbored such larceny in our hearts for her. She muttered, "I was so stupid to think that." My sentiments exactly.
In actuality I think it was me she couldn't fathom having such love and empathy for her. Why me, out of all of her favorites would be so unstoppable when it came to her health and welfare? The child whom she treated like the runt, as a female dog does when she pushes the less then perfect puppy to the side, my mother thumbed her nose to me time and time again, year after year. The one she couldn't find a crumb of love for would reach back 39 years later to rescue her with an open, loving and forgiving heart. Which gave us a second chance at living and loving each other fully. And all because she laid at the crossroads of death and dying, she has been reborn as my loving and accepting mother and I---as her devoted daughter.
It has been almost two years since her relapse occurred. Days after I discontinued the unnecessary pills, Mum was taken off the diapers and she was back to swallowing pills with her beloved O.J. Her hallucinations ended, the idiotic fears lessened and her memory, mind and sense of humor returned. Mum drug-free, went through the 10-day evaluation at C.M.C. with such promise, the director extended her program for another four weeks. In the interim I fired off a complaint letter to her social workers manager, discharging her from the case. Terminated her contract with the Home Health Care Agency who in agreement with everybody else, believed Mum was dying and incapable of being home alone.
Due to negligent accusations against her former Internist, her Doctor of 8 years resigned from her case in fear of a law suit. I replaced her with another Internist who is aware of our over-medicated concerns and I stay involved to be certain she practices conservative medicine with my mother. Of course Mum didn't take any of this lightly, she resented my taking charge of her life. But after she witnessed that she was able to return home and live independently with only a few hours of assistance a week. Her dismay was quickly replaced with happiness to have a second chance at life. As her body and mind strengthened from the rehab, she was more confident in her own capabilities and in turn began trusting me.
It is understood throughout the family and her dealings with governmental agencies that I be included on any and all decisions. As her health was a mess, so were her finances. So I am now as she calls it, "her secretary." And assist her with all financial transactions. It may seem like a lot of work, but it's not. Getting it all in place was the most difficult, but now two years later all I have to do is maintain organization of her affairs.
We are closer than ever as mother and daughter, friends, client and assistant, drill sergeant and subordinate. But we do it joyfully, lovingly. She no longer sits in front of the television eating chocolates. She realizes how far she's come and doesn't want to lose what we take for granted every day: independence and health. And when I do catch her in a white lie, and she's getting lazy with her exercises one remark always seems to work, "Well Mum, you could always go into a Nursing Home."
I would have never known that the time spent with my sister drugging and partying would have played a significant part of my life 15 years later. Though my sister, a drug addict and I.V. drug user died from AIDS in 1987, I had come to learn a lot about drugs. In my 20's I had a pharmacists wall drug chart with the names and pictures of significant drugs. It was cool to have I thought, then eventually a P.D.R., which proved to be invaluable.
I have researched medicines for family and friends, finding drug interactions and adverse side affects unbeknownst to their doctors. I believe that most doctors treat the elderly especially, with numerous unneeded drugs that will sooner or later put them in nursing homes. All because they give prescriptions out like candy instead of taking the time to find out what the root of the problem really is. A whole new set of symptoms are created just by taking a couple of unnecessary pills. And if the person complains too much, then sleeping pills, anti-anxiety or anti-depressants are added as a Band-Aid only making matters worse. Before you know it your mother or father appears to be more frightened and forgetful than usual and has shown symptoms of Alzheimer’s. Starts wetting the bed and can't remember their address or even what day it is. Usually at this point the unsuspecting and unknowledgeable children of these elderly people are faced with the fact that their parent may be dying.
The doctor's confirm these thoughts and fears suggesting other living arrangements. Finally, when at these crossroads with a loved one do we start to take interest in their life. If some of you are able and lucky enough, with great effort, to become an activist for their health and welfare; then what you will find with the right research will be astounding. For you will have uncovered like Sherlock Holmes, a pattern and a list of new found reasons for those symptoms that your parent is displaying. You discover it's the drugs that they take faithfully with no questions asked. Why should they doubt the authority of their revered doctor. For without them where would they be? If you are able to intervene, while your parent is still living independently. Whether via phone, fax or letter, long distance or local, your efforts will be successful and your parents can remain as before--living at home.
Once the "unnecessary" drugs are discontinued the previous symptoms will disappear. Believe me once you start corresponding with the doctor with some cold hard facts. They will graciously aid you and will continue being on their toes as they assist with the health care of your parent. If they resent that you are intervening and try to turn your parent against you, then consider threatening the doctor with a Malpractice lawsuit and they will conveniently resign from the case.
Your parent may be angry with you for interfering in their life and ruining the relations with their adored doctor. Once you show them the proof of why they weren't "acting" like themself, and the next recourse for you is to commit them to a nursing home. Then in a short period of time they will come to their senses (that is after the mind-altering drugs are stopped with a doctors knowledge and assistance). As long as you allow them to choose another doctor on their own and make it clear to the new doctor that you will remain involved, but in the background. There shouldn't be any protest from the new doctor as to your requirements for "conservative" practices. Any further medications should be discussed at length with you and your parent, so as not to produce the same results as the subsequent colleagues had done with their lack of good judgment.
We are raised in this culture not to question our Medical Practioners, as if they were some sacred or holy figure incapable of being careless or making misjudgments. The majority of the time the Medical Industry answers to no one but themselves. Unless of course you are fortunate enough to be financially independent and are able through the courts to fight for your rights. But most of us are not that financially able nor are medically astute and the Medical Industry knows that. Therefore we must believe and trust in ourselves first and foremost and ask them many questions no matter how idiotic they sound, for it is our life or a loved ones at stake. Ask questions NOW while you and they are still alive. Because if anything should happen, believe me you will track them down and you will be asking: Why? How could you? What happened? By then my friend, it will be much too late.
This elderly person is not some disposable old woman or man or merely a case number, they are someone's sister or brother, your father, my Mother. They are not orphan's alone in the world, left in the hands of the Medical Industry to do as they wish, with nobody to answer to. Too many of our parents and grandparents are sentenced away to nursing homes, as they wait to die. They are the only parents we will ever have and it is up to us as their children to care for them as much as possible.
For in the not too distant future we will grow old and the children we had will have gone to live their own lives and we will be faced with the same uncertainties. To live at home or wait to die while in a nursing home? Hopefully with Gods grace we will all be spared and die at home in our own bed, amidst the dreams of our children as they laugh and play before your eyes, as if just yesterday, and old age was, far...far...away.
Originally written in July 2001.
Copyright 2001, R. B. Stuart. All rights reserved. No reproduction of this blog in any form.