To Whom It May Concern,
I am writing this essay in order to reflect upon a very special time in my life and also to offer my story and opinions so that other people might benefit from my experiences. Never have I been confronted with any challenge and solemn responsibility that could equal the role I assumed for approximately ten years as the primary caregiver for my totally dependent mother, who suffered from gradually worsening Parkinson’s disease for the last thirty years of her life, until she finally had significant dementia, could not talk, walk or change positions while sleeping, was unable to groom or feed herself and, for the last few years of her life, could be said only to be “existing” and not living.
Until this total decline occurred and before we committed my mother fully to a nursing home, my father and I cared for her at home for as long as we deemed prudent, but this era of home care had many negative aspects and, especially, severely reduced my father’s fulfillment during his retirement because my mother could never be left alone, and he was the one obligated to stay with her, while I worked to provide income for the three of us. My father had been an automobile salesman and had no retirement plan or accrued savings. In a way, it was fortuitous that I never left home because it seems that my parents’ existence would otherwise have been lowered to an abysmal level.
My mother regularly visited her neurologist and Parkinson’s specialist. In hindsight, perhaps, we should have employed more, but expensive, professional home care at an earlier date. However, we were inexperienced in what was occurring. While my mother could manage, we did send her to daycare several days per week, thus providing some relief for my father, who desperately wanted to “have a life.” We also employed a lady to handle some of my mother’s hygienic needs, but we did not secure costly around-the-clock assistance and often had to deal with the results of an incontinent lady. We now had a baby, but without the joys of one, at home.
My sister-in-law provided many meals, and we took advantage of the local Meals on Wheels program but, even though my mother could still feed herself, someone always needed to prod her and to monitor her eating because many people with Parkinson’s disease eat so very slowly and potentially confront aspiration, resulting in choking and/or pneumonia, with each swallow. I recall once how my father, after a long home confinement, risked leaving my mother alone and, when I returned from work, I found her head down against the table with her face partially buried in her food. Of course, at this stage in her life, while she was still ambulatory, my mother was known to have turned on the burners of the stove, changed the air conditioning or heat to a radical level, or perhaps locked herself into a standing position and remained there for a prolonged period until someone nudged her slightly. This latter circumstance is typical of many Parkinson’s disease victims.
Nighttime was never pleasant. Everyone needs sleep in order to function effectively, but we never had one night of uninterrupted rest because my mother would always moan, experience a delusion, and/or need to be repositioned to avoid bedsores. My father was hard of hearing, and the declining vocal strength symptomatic of someone with Parkinson’s disease did not help the situation. Also, my father did not fully comprehend what was happening to his beloved wife and insisted that she could logically request help (despite the increasing dementia) and speak louder if she desired. Thus, occasionally, he would purposely delay his help in order to “teach her a lesson.” Therefore, sometimes I would be awakened upstairs and would need to provide assistance in the middle of the night - never being fully able to return to sleep, yet always having to be prepared for work the next day. I tried to understand the many difficulties and great personal loss that my father was enduring, although I still berated him on various occasions for his poor choices.
My mother wore diapers because of her incontinence and urinated during her sleep. She was changed immediately in the morning, but we were unaware of also always doing so during the night. Consequently, as a result of our inaction regarding this matter, my mother developed a deep and wide opening app. the size of a penny at the base of her spine. This area would remain a problem and require constant attention for the remainder of her life.
After more than five years of all the aforementioned difficulties and other energy-draining experiences, our family concluded that it would be best for everyone if my mother were to reside permanently in a nursing home. Thankfully, my brother had contacts in this area, and my mother was soon to be committed to a good facility. This decision was positively the correct one, but I was terribly saddened that my original household was being altered in this fashion.
Before my mother left forever, I lectured to my father that, for my mother’s optimum treatment, we had to believe that, unless we were constantly vigilant and in attendance, she would receive far less than the magnificent care we desired for her. I likened it to driving defensively in order to avoid accidents because one must assume that every other driver on the road is dangerous. The remaining years proved that this advice was very sound because, even though I cannot truthfully condemn any employee at the nursing home for lacking dedication to the patients, the total operation was too bureaucratic and/or disjointed not to have perilous loopholes.
My father was the primary overseer of my mother’s care for the first two years of her commitment until he died of a heart attack, which many people have said was at least partly caused by the stress of his daily routine. He would never have acted differently, as he knew my mother would not if the situation were reversed. I admire him tremendously for this unlimited devotion and strived to equal it when I became the primary caregiver after his death.
Just like one teacher cannot totally meet every student’s needs (especially those in Special Education) in a classroom of 20-25 pupils, so too was my mother only one of a larger number of patients assigned to a specific worker. Since she was debilitated in a variety of ways, my mother needed frequent one-on-one help to be on a schedule most conducive for her welfare. I understood reality and never criticized the nursing home for its understaffed and overworked employees not administering only to my mother and none of the other patients.
As I have previously mentioned, my mother had various eating difficulties/dangers and needed much extra time and attention in order to consume her meals because she always retained her normal appetite. This extra time was very seldom forthcoming from the workers. I personally saw them give very limited eating time to hungry patients who required feeding assistance or even to leave the food tray in front of a feeder (one who needed assistance to eat) and then remove it without once attempting to aid such people. We were determined never to allow my mother to suffer such a fate. Therefore, while my father was alive, he and/or I (by far my father) were always with my mother for every meal.
When we kept my mother at the nursing home for all three meals, my father’s schedule was as follows: 1) arrive at the facility app. 8AM to monitor my mother’s breakfast 2) assist her in walking the grounds to keep her ambulatory for as long as possible and to provide benefits of exercise. The staff might attempt this but, understandably, for a much shorter duration and at their designated time, which might not coincide with my mother’s pace of previous events, thus causing her to miss these important functions. 3)depart from the nursing home app. 10:30AM for precious free time to himself 4) return to the facility at noon in order to monitor my mother’s lunch and then either to escort her to an activity or to verify that she was put in bed for a nap 5) travel to home app. 2:30PM at which time he might nap 6) return to the nursing home app. 5:00PM in order to assist with supper, after which he might walk with her or chat with her, although the conversation was heavily one-sided due to my mother’s declining mental faculties 7) depart from the nursing home app. 7:30PM and enjoy television or do small tasks at our house. Does this life sound like a lot of fun for him? He could have improved things for himself by sacrificing time spent with my mother, but he was worried about the risks for his wife, some of which I have previously mentioned and more which shall be cited.
We could never be certain when some type of mistake would be made with the meal - whether it was the wrong or ill-prepared food, a missing item, etc.. Also, one dose of medicine prescribed by the doctor was given at suppertime, and we noticed after a while that my mother would develop temporary lockjaw for app. 45 minutes when the medicine was administered, thus preventing her from eating. If we were not there to notice this eventually and bring it to the doctor’s attention, suppertime would have elapsed by the time my mother’s “temporary lockjaw” ended, and it seems unlikely that one worker would have been assigned solely to guarantee that my hungry mother had the time she required to eat.
Furthermore, after I informed the doctor of the effects of the medication, he logically ordered the dosage to be given after supper. However, we still had intermittent problems because some regular nurses were unaware (for whatever reason) of the new instructions. In addition, communicating with substitute or per diem nurses was a cause for concern. Lastly, some nurses told me that they had app. 30-60 minutes of discretionary time within the orders to dispense medication. Without even remembering or knowing about my mother’s particular situation, some nurses simply wanted to finish their rounds.
Also, it is typical for Parkinson’s disease patients to have tremors or shaking in various parts of the body. For the greater part of one year, my mother experienced extremely violent involuntary kicking of her legs (much like pedaling a bicycle) so that she breathed heavily and sweated profusely. I could not believe that this old and frail lady failed to suffer a heart attack from these repeated occurrences. These outbursts could happen at any moment and, again understandably, the nurses were not always free to provide the actions and comfort my mother needed. I recall one nurse who worked diligently, however, to bathe my mother in regulated water when the leg tremors occurred. Fortunately, the “bike pedaling” disappeared and did not bother my mother for app. the last six years of her life.
Occasionally, we would temporarily remove my mother from the nursing home for several hours or more. During this time, my brother and his wife would sometimes provide care and a meal for everyone, thus easing my father’s burden. In addition, my sister-in-law prepared many meals for me and my father at our home. Otherwise, another casualty of attending to my mother’s needs at the nursing home could have been our nutrition.
These first two years, which I have heretofore only partially described, of my mother’s residence in the nursing home were very easy for me compared to her last ten years there until her death because my father died, and the responsibility for her overall care became almost 100% mine. Family tensions can arise concerning what constitutes proper care at the nursing home (beyond that of the staff) and who is to provide it (physically, financially, etc.). I have heard of everlasting bitterness created among relatives who could not resolve and/or finally accept differences of opinion in these matters.
The only other person who would even consider steadily administering to my mother’s needs at the nursing home was my brother, who had his own business that required meetings at any time. Also, he had two grown children for whom he still significantly extended himself, a wonderful wife who obviously deserved his attention, a home to which he must tend, and personal fulfilling activities. I tried to understand that my brother, nicer and more honorable than I, had to negotiate a balance between his aforementioned commitments or pleasures and service to my mother. However, I disagreed with the percentage he assigned to each, and we certainly had our arguments about his choices because he considered himself totally dedicated to everyone, but I regarded some of his absences in temporarily relieving me from my mother’s care as incorrect decisions or unnecessary and producing more work and stress for myself. I wanted and believed that I needed to be relieved more frequently (and could have been) at the nursing home. Of course, my brother would state that I failed to comprehend his many complicated responsibilities. This topic is very debatable, and neither person’s view about attendance at my mother’s side can be proven right or wrong. “Everybody sees things differently.” My exasperation grew when my brother announced that his daughter was pregnant and he would, therefore, spend even less time at the nursing home in order to assist with his first grandchild.
I must state that, with my parents being deceased, I now love my brother more than anyone else in the world and have named him in my will as the sole beneficiary of all that I possess. We certainly do not have a bad relationship. However, to this day, I believe that he and others severely underestimated the difficulties with which I was confronted and did not comprehend the many hours of work and concentration that my profession required after I actually left the site of my employment. Just because I did not physically have to meet with anyone, go to a specific place, have to serve additional family members, etc. was no reason for anyone to conclude that my needs and life were less important than theirs and, with very short notice, I could easily be the one to care for my mother, despite promises that someone would relieve me.
Any other person (unaffiliated with the nursing home) who assisted me in caring for my mother always had the option of not attending because their view of her and/or their belief concerning the constant lengthy presence required of someone to aid her differed from mine. Other caregivers who planned to provide help at the nursing home but then believed they needed to cancel or simply were too tired to attend always had me as a backup. I never could enjoy such a luxury, and I believe that no one ever fully understood the extent to which I (or any primary caregiver) needed relief. Perhaps, as with many events, only those who have experienced them can fully comprehend them or properly appreciate the difficulties.
I was a secondary school teacher for over 35 years. My workday never ended when the students could leave the building at 2:30PM. I might have required meetings, after school help, etc. that kept me there until 4PM. On rare days, I could leave at 3PM. Since the drive home took thirty minutes, I might have a little time to “unwind” and accomplish something personally until my mother’s supper would be served at 5PM. I usually stayed at the nursing home until app. 8PM. nightly attending to my mother in various capacities, although I hired someone to assist me several times weekly so that I could leave app. 6-6:30PM. I still went to the facility every night.
It was fortunate that the nursing home was only five minutes from my house. When I drove into my garage usually after 8PM, I was exhausted. However, I still needed to prepare my supper and to attend to various unavoidable chores that we all have in our lives. In addition, teachers must plan lessons, correct papers, etc. on a daily basis. These tasks have to be done!Since the day can never be longer than twenty-four hours, I stole the time that I needed from my sleep allotment and would go to bed app. 2AM and arise for work at 6:30AM.
My daily time at the nursing home often doubled on weekends because I would usually be the one to go there on Saturdays from 12N until 2:30-3PM in order to feed my mother her lunch and to perform other tasks. I would then attend mass at 4PM. and return to the nursing home at 5PM., remaining until app. 8PM in order to assist with supper and other duties. Sunday’s schedule was the same, except that I did not attend mass.
Whenever I could arrange relief for coverage, it was like a tremendous gift. However, perhaps some of my complaining is unjustified because my mother’s condition grew to be extremely delicate and required precise treatment so that I was reluctant to entrust her care to others. Even when someone whom I personally trained and educated was there, I often attended for the same period of time as he/she did, but at least things were easier with the assistance and companionship that I had.
I am glad that I am alive today because, as I drove home from work on numerous occasions, my head would droop at the wheel and the car would swerve. Luckily, I always avoided accidents. Sometimes, as I approached a stop sign my car would lightly bump the one in front because my tiredness unfavorably altered my depth perception.
Some might argue that I could and should have hired more frequent personal help for my mother or reduced the amount of time I spent at the nursing home. Maybe I could have implemented the former suggestion, but no one knew my mother or how to handle her as well as I did. The latter suggestion was as much of an impossibility for me to absorb as it would be for one plus one to equal anything but two. I have already explained various dangers or problems at the nursing home, and I shall describe more later. I had clearly learned that my mother’s comfort, lack of suffering, and overall well-being were directly proportional to my attendance and constant involvement at the nursing home, especially as she was consistently evolving toward total dependence upon others. I implore every caregiver to label firmly on his/her heart and mind the mathematical truth that I have stated in this paragraph about the importance of attendance and constant involvement in the care of a loved one in a similar position.
As time passed and specific problems occurred, my mother required hospitalization on several occasions when her permanent condition was such that she could not talk, feed herself, and move from any position into which she was placed. This different environment created new dangers because strangers were now assuming control of my mother’s care and had no experience with or knowledge about her as a specific individual. I reminded the authorities at the nursing home to send all my mother’s personal information to her new location but, at times, this was either not done or ignored at the hospital. I never overlooked my belief that I must anticipate mistakes or oversights at every turn. The following are some examples of what occurred at the hospital:
1) My mother was now at a stage where she required food to be puree. However, she did receive solid food AND the tray was left there for her to feed herself.
2) A worker came and wanted to remove my mother to undergo a certain procedure when it was actually meant for her roommate.
3) My mother was brought the wrong medicine, which I recognized because it was a different color.
4) Someone actually tried to question and solicit information from my mother.
It was certainly fortunate for my mother that the personal attendant I hired to administer to her maintained the same coverage for her at the hospital as she did at the nursing home and that I would do the same after work.
During my mother’s final three years at the nursing home, I needed to hire different attendants for her because some would depart. I undertook all the steps for advertising and interviewing the applicants and for instructing the new helpers totally about my mother, especially in feeding her because swallowing food was a monumental problem for her now, and she could aspirate and develop pneumonia or choke on any mouthful. It was simply too dangerous for just anybody to feed my mother. Therefore, only her nurse would assist her at breakfast, the personal helper at lunch during my workdays, and myself usually at supper. I was adamant that no one, except these people, put anything into my mother’s mouth because others, with their lack of familiarity and/or desire to “move along” with their schedule would only put my mother at great risk.
Everyone knew that, unless I was dead, I would be at the nursing home every night app. 5PM to feed and provide other care for my mother. This information (and much more) was in my mother’s personal notes that all nurses were supposed to examine and implement. Yet, more than once, I arrived to discover someone unauthorized and unaware of my mother’s particular situation actually attempting to feed her as my mother lay almost prone in bed!
As my mother’s disease progressed or as she might be battling a new problem, the doctor sometimes would alter the medication (type, dosage, and/or timing) for her. It happened that some nurses did not check the chart daily and would assume that things were always as they were yesterday. Also, at times, I discovered that my mother was given the proper medication as directed but, unknown to the nurses, she did not swallow it. Rather, she kept it at the side of her mouth, where I found it perhaps hours later when I appeared.
Ever since the open sore (previously mentioned) developed at the base of my mother’s spine, I would examine that area daily to be sure that the damage was being properly contained, and I would also inspect every inch of her body to ascertain if anything new and troublesome had occurred or developed that was visible. I did, although rarely, find cuts and bruises that had not been reported or treated. I am surmising that workers might not disclose injuries that were caused by their mishandling of the patient because of possible negative repercussions for themselves. While most patients at the nursing home had skin that was not of high quality because of the many factors contributing to its decline, that of my mother was always wonderful for her entire twelve year confinement.
To illustrate the importance of my action described in the previous paragraph, I truthfully remember hearing a loud thud that came from the room directly across the hall, and I could observe that the patient had fallen to the floor, as one worker, by herself, was attempting to move her from the wheelchair into bed. The rules strictly required such an action to be undertaken by at least two people. When I entered the room, the patient’s leg was in a somewhat twisted position, and the worker said that she would do anything I wanted if I overlooked the incident. Of course, I reported it. Sadly, the patient developed complications and died a short while later.
It was often proper and necessary for patients to be assembled in their wheelchairs and stationed in the halls - sometimes for lengthy periods. Many of these people, including my mother, required restraints to remain at least partially upright because they simply could not support themselves adequately. I often observed patients slouched over in what seemed like a very uncomfortable position and would sometimes hear those who could speak and think ask for a drink, a diaper change, to be put in for a nap, etc.
I tried to understand how all workers faced heavy demands and might have more important matters confronting them than always to administer to each patient’s “less significant” requests and needs as the patients aligned the walls. Therefore, I requested that, soon after every meal, my mother be placed in bed for her greater comfort -unless she was scheduled for an activity. This was not always done, and on numerous occasions, when I departed after feeding her lunch and expected the workers to do this, I would return several hours later for supper and discover that she had never been moved from her position along the wall where I had left her. Once when I returned at nighttime and observed this (as well as seeing her awkwardly bent over and moaning), I loudly uttered a verbal tirade that bemoaned how she was overlooked. However, the same oversight happened again!
I often wondered about the various avoidable agonies that must have been suffered by patients who had no one there for them at all or nearly as much as I was or had arranged for my mother. From all that I have mentioned so far, do you think that any patients in a nursing home have ever died a preventable death (of which the family was unaware), primarily because the relatives or other loved ones never understood nursing home care or what their part in the critical process must be?
Because her disease progressed and her body weakened, the doctor ordered that my mother needed continually to receive a low dose of oxygen during the last several years of her life. This she inhaled through the typical prongs easily placed in her nose, and the tubing was connected either to a large stationary tank or a portable one. Would you like to guess how many times I discovered one or more of the following scenarios at the hospital and the nursing home?:
1) Nothing whatsoever connected and functioning
2) Everything connected and functioning, except the prongs were not placed in her nose
3) Everything connected, prongs in her nose, except the oxygen was not turned on
4) Everything connected, prongs in her nose, oxygen turned on, except the tank was empty
The nurses would monitor the flow of oxygen throughout my mother’s body with a special instrument, and the reading was supposed to be at a certain level to indicate that circulation and breathing were acceptable. My belief was that these features could never be examined enough. Whenever I arrived at the nursing home, the first thing I would do is to ask the nurses what had occurred with my mother since I last saw her, and then I would quickly request a reading of my mother’s oxygen count. The nurses complied as quickly as they could. At one specific arrival, I was assured that everything was fine. Who knows when the next oxygen reading would have been if not for my habitual request? When the nurse examined my mother, the number was so alarmingly low that my mother was rushed to the hospital app. 5:30PM, and I remained there with her until 2AM, at which time the doctor judged that it would be safe for her to return to the nursing home. I went to bed app. 4AM that morning and reported to work four hours later.
During my mother’s last ten years at the nursing home when I was overwhelmingly clearly her primary caregiver, I was never at ease when my telephone rang or when, at work, a secretary would inform me that I had a telephone call. My mother was always on my mind, as I now often think of my deceased parents, only in a different way. On at least three occasions, I was summoned from work (and also from home) because my mother faced an emergency that threatened her life. Happily, she did not die directly from any one of these occurrences. The tension, worry, personal deprivations, etc. in all their forms which I experienced in my life due to my mother could have caused my collapse were I not raised to accept adversity as long as I did all I could to overcome it. I intended to follow this philosophy -anticipating everything and leaving no stone unturned- so that when my mother died, I could truthfully have no regrets concerning how I served her when she desperately needed it. She and my father always proved (and I knew) that they would die for me. It seemed lovingly obligatory to me that I use my intelligence, resources, and energy to manage what I knew would be my mother’s needy and dangerous, totally dependent final years.
Visits to my mother by family members certainly declined with each passing year as she became more and more unresponsive. These relatives would have their reasons, especially stating that they could not communicate with my mother and that she never acknowledged them. So, why bother? Could the answer be that she is a loved one, and people need to extend themselves or sacrifice in such instances? They never contemplated the effects of one’s voice or how gently kissing her or stroking her limbs might produce invisible positive results, much as everyone knows that a baby benefits from this treatment, instead of just allowing the child to sit there. I always wrapped my arms around my mother and caressed her as I sat with her. However, I suppose that the bottom line was that she was my mother, and I loved her beyond all else. It just was not this way for other people. Perhaps, I cannot be objective and need to be more mature and realistic in evaluating everyone else’s actions.
I do wish that I kept a daily diary of my mother’s life during her illness, especially from the day she first entered the nursing home. While I have not recalled every bureaucratic breakdown or professional oversight (I am thinking of various lost articles of clothing, despite their being labeled with the patient’s name), I hope that I have alerted people to what is likely the typical world of a nursing home and the many factors that transpire or must be considered in caring for a very dependent loved one.
The major axiom I wish to emphasize is that the family cannot just deposit the impaired person in a nursing home and assume that most things will be fine, any more than a parent cannot just send a child to school and assume that all of his/her needs will be properly met. In both cases, there must be constant involvement and questioning in so many different ways by the responsible adult party. Otherwise, the residing party will be in far greater peril than necessary. Had I not been involved as I was in my mother’s care and generally left her welfare to the workers in the nursing home, she would have suffered more on a daily basis and died earlier (perhaps by years) in a worse way than she did.
Everyone (doctors, nurses, aides, social workers, recreational directors, therapists, administrators, kitchen staff, and all others) affiliated with my mother’s care was wonderful, competent, caring, and dedicated. Also, I believe that her specific nursing home, which I would recommend to anyone, was of good quality, and I am thankful that so many people extended themselves on my mother’s behalf. The entire operation was simply so intricate that all and more occurred as I have reported.
I have learned that, if I could be granted one wish in life that must be used for myself, I should not request power, fame, wealth, and/or talent. Rather, I should ask that I be totally independent and fully functional for my age until the day I die, because I have witnessed the sad and horrible alternative. In order to address properly a complicated and difficult situation, one must be aware of the facts. I shall be extremely pleased if this essay assists families in realizing and combating the obstacles to be overcome in the process of managing the life of a sickly and dependent loved one.