APPENDIX TO CHAPTER 20-Saving Shelia's tear.
The parting tear that’s affecting my guilt--
It has been eight months since Sheila passed (June 20th 2013). Her final moments were as follows: Lying motionless on the bed, seemingly unable to move, there were several short efforts to fill the lungs--as if for a failed heart. After the first few gasps, as though desperate, she opened her eyes searching for me. I knew she was looking for my help…help from her fellow traveler for over four decades, and her designated caretaker for two years.
She had first turned her head slightly to her left, which was my sleeping side, where on the lower part of the bed sat our son Richard. He was reading aloud hoping she could hear. Then she immediately looked slightly to the right. I was there, facing her, holding her hand—hoping that she might be aware of it. Her eyes focused on mine for a few more gasps. One tear formed stopping mid-cheek. The gaspings ceased. Her eyes closed partially. Sheila went...
She had not been able to swallow water for a few days and had not eaten for longer. The last stroke affected her throat.
Richard, and wife Kelly, had come in the afternoon. He was sitting on the foot of the bed with his back to his mother. Kelly was seated near the foot of the bed. It was about 4:40 PM when the gasping occurred. I said: “Richard!”. He turned to see his mother pass.
We cried. I was surprised to hear myself cry that deeply. During the last two years I’d cried on previous occasions when I thought she had died. After a few moments there was one more gasp, and I said: “Oh Sheila, don’t do this to me again…” She made no additional effort to breath. I knew it had nothing to do with what I’d said. But there was/is still the guilt for whatever degree of selfishness was involved in that expressed hope for her/my relief.
If Sheila could have seen us crying, it is easy to imagine that for the life of her she’d wonder why? And, you know, I believe the mind is not confined to the brain to the extent that she, on the way, could not witness our grief. After all, there is precedent, like Jesus’ presence after his death. And there are those clear and truthful words spoken to a believing thief that “today” they would be in paradise.
Soon began an onslaught of fixating memories increasingly difficult for an affirmed self-critic to penetrate or go around. There was no avoiding my guilt for having contributed to the breaking of her heart—and other hearts too.
Paradise Point--Jack had gone home to prepare for the night shift at the Heritage Inn. At 4:30 he, Shanthi, and Ashton were sitting in their car at Paradise Point pensively looking out over the Pacific. It wasn’t Battle Rock or the Lighthouse but…Paradise Point. He says while there he felt a sudden hard compression like a blow to his chest. “What was that?” he said to Shanthi. She had not felt anything.
When Jack described the incident, she suggested they leave immediately and that he should go back up to Coos Bay—to be with his mother. They were driving a short distance back home in Port Orford when Jack received a cell phone call from Richard—“Mom died”.
Shanthi and Sheila had gotten very close. Also, Sheila suddenly had become a surrogate parent on this side of the globe. Her ill father’s passing a few weeks prior had sensitized Shanthi. They had gone to Sri Lanka and within a few days her father passed—as though the event was postponed for their arrival. She was opened to and reading cipher’s mystic side.
In recounting Jack’s experience and while writing this, the meaningfulness given to “Paradise Point” absorbs some of my immediate and chronic guilt, which has been expanding in the growing space of Sheila’s absence. I’d like to think that his experience is a signal from over there to here. (While rereading the above and weeping, Jack called, and unaware of my state: “Let’s you and I go out in the morning for breakfast. It has been a while. We’ll go to Paradise Cafe.)
I’m a proficient theorist on guilt. Guilt was considered in depth in my dissertation on Karl Jaspers (psychopathologist, philosophy professor)—to meet the requirements for a graduate degree. This dissertation was being written during the conflict at the Clinic where and when the relationship with Sheila began.
I “know” guilt is unavoidable, ought not normally to be sought, has at least a dual nature, cannot become an object as such, but guilt can be illuminating, and is necessary for one to move meaningfully as an open ended self suspended between this corporeal/temporal world and the infinite source. See? I can speak to it. So…it should be possible to handle real guilt feelings, right? After all I know about the limits of cognizing and its delimiting potential while keeping one foot and eye on its limits. This sort of logic is called epistemology.
I understand that the approaches to guilt are the same as those approaches to the limited mind’s handling of other categories such as conflict, suffering, and death—and all in particular and general. Karl Jaspers refers to those experiences as ultimate situations. Where guilt is concerned, when all other considerations are exhausted there remains existential guilt. That’s guilt from merely existing, and in my particular situation, my existing and Sheila not existing, but qualified by saying…not existing…not standing out of Being in the same way. It’s about my omissions and commissions that made life hard for her heart.
My guilt about her guilt—The dual nature of my guilt is that I could not or did not resolve her guilt feelings about the fact of our divorces. As indicated she was pragmatically focused. Her feeling--and rationale--was one of having failed a special responsibility, i.e. the divorce’s effect on her girls—and the extended affect on all others.
I hadn’t taken the effort to moderate that engrained growing fear of Judgment and hell. Our upbringing included working out our salvation in fear and trembling. The fear grew as her time approached and at the most all I would say was that it seemed her humility would appeal to a merciful judge. Occasionally she would be reminded that there were explanatory circumstances and dynamic precipitations involved. That became less meaningful as her critical thinking dulled. Then only the easy clear and distinct stood out--upon which guilt and fear fed.
There were no deep attempts to question such fatalistic orthodoxies that institutionalism exploited. It was not explained that there was a prevailing tendency for the Pharisees to exploit “their” belief in the afterlife, and their continued logic’s use of eternal punishment--if others failed to comply with their agenda. The logic being that if one is going to burn eternally in hell, then there’s nothing wrong with burning or crucifying nonconformists in this life.
There may not have been scribes’ records of divorces and other accounts of commandment breaking, but…the new psychology turned attention to consciousness’s lack of conscience: If one looked with lust, that was in fact braking the commandments. Based on Pharisees’ logic, they were the ones that should fear being eternally burned. So Jesus turned their use of hell back on them—while warning the “kingdom controllers”, the autocrats, that if the will of God were done on earth, logical guilt should result in the fear of not having a place in the heavenly order nor, whenever, on earth as in heaven.
So, guiltily, with autonomous circumspection, I’d avoid all portions of such anxiety inducing references in our bedtime bible readings. See, I exploited, in a good sense, the then contemporary psycho-social-politico-religious situation, i.e. informed hermeneutics, through avoiding it. Toward the end I’d read only the love-chapter that ends with faith, hope, and love, but the greatest of these is love. It was her favorite anyway.
If a memorial to Sheila--with a festive goal--is not forthcoming, I think, for lack of a healthier term, guilt shall become too overwhelming. In her space here grows my guilt that gets larger in time—though there’s great comfort in reading the (cipher--Jaspers) language about “paradise”—a penetration of the opaque, a revelation that comes in a flash or not at all. That sort of mystic language was not sought; the episode, the epiphany just happened and was interpretable to meet a selfhood need. It reinforces Jaspers’ biblically based positive or theistic existentialistic thinking—thinking beyond cynicism and fatalism.
So it seems fitting to begin this festival with things Sheila had talked about, like: Her father could barely read. He had no greater formal education than the third grade, and the rest of his life was spent surviving. It was that sort of era. My father had finished the eighth grade; his father had no more than third. It was prior to the time when the economy, labor unions, war, allocation of Federal and State funding, and the voting bloc brought about truancy enforcement. Like, in my day I saw the Mennonite children forced to attend public schools.
Though uninformed in letters, her father’s mother often read the Bible to him—it was considered sacred literature. Sheila was the younger of two daughters. Her father preferred to hear Sheila’s readings after the evening meal--a custom he established when his shift work allowed it.
Sheila was very expressive when focused. She could focus on the task at hand—if she approved of the task. Long pauses could easily be taken as disapproval-silence, but they were concentration mustering.
Though her father could not read, he was very sharp. Her sister expressed some displeasure at her father’s preference, but it was restrained by the experience that when Sheila was five she escaped death by the new sulfa drug—tried as a last resort. Her recovery, her request for a banana brought tears of joy to her parents and only sibling, Ida. Sheila, was left cross-eyed, and having to learn how to walk again. Sheila died with her glasses on.
She would become the chief aid to her terminally ill father. Comatose from lung cancer (which he attributed to hot mill-furnace work) he died at home in his sixties. He served as an elder in a local-autonomous congregation, a “Church of Christ”. This was Sheila’s religious upbringing too—as was mine (no at large real centralized headquarters, i.e., not federally centralized, but provincially centralized).
Her suffering, my guilt’ insult—Sheila’s last stroke had resulted in her rapid loss of throat control and a general weakening over the next and last 14 days. I understood the fortnight factor, the hope that by the 14th day it could improve…or not. For the first few days there seemed to hope for improvement. She managed to swallow with difficulty, made worse by a chronic sinus drainage problem. Her suffering makes references to my guilt seem offensive by comparison.
One could escape feelings of responsibility through the comfort that rationalism offers by explaining the final look and tear as something simply natural, some unfelt non-conscious sort of response to some stimuli. One can suppress guilt by thinking that by naming the tear a “Death Tear”, that guilt can repose in an apparent nomenclature.
“Glenn…Glenn…are you in here?” had become exponentially frequent—sometimes every ten minutes as her time-judgment diminished and napping became more frequent. Moreover her world had shrunk to the living room wall she faced which she had adorned artistically with family photos, birds, plants, and washed up beach wood. When she could not reach things, or could not do anything to manage her wall-world, my assistance became the means especially during the last year. Her effort to manage this wall-world resulted in a fall and a broken hip—which I had warned her about: “Sheila, if you fall, you know that will be the beginning of the end!” It happened, partly due to throw rugs. I had wanted to remove them for safety.
Here is an example of my guilt, which grows in the space of her absence, and nourished by the unfairness involved in the fact I live on but she is not here too. I was tired, and seriously wondering whether I could hold on long enough to provide the necessary care. Once during her last few months, for about 15 minutes, I lost total control of my right arm. Soon after that I could not walk or crawl without falling to my left. I moved toward the bathroom scooting flat but that only lasted a few days.
But it left me wondering what would become of Sheila. She begged me to not hospitalize her nor use the nursing home. Without going into extended detail, on two occasions I simply removed her from the nursing home, once with the aid of my son Richard. The police were called and we were referred to adult services as a case of an adult in need of protection. I had worked in protective services as a casework supervisor. However these adult-protective workers were impressed with the quality of care being provided in our home.
Sheila was undemanding except rarely in a meek and attempted tactful way, but once I said: “Sheila shut up, just shut up. We don’t know how long this situation will continue, and I cannot do what you want.” She, as was her way, became silent but brooding with the jaw slightly out as though holding her tongue.
Sheila was not one to attempt getting her way by verbalizations. She had learned restraint while in grade school: Though a favored student, the teacher would put tape over Sheila’s mouth due to excessive and expressive talking. But it was intelligent talking, and her voice, though pleasant, carried.
After telling her to shut up, I left for my computer. Shortly she appeared at the door with her walker. With the seriousness of a young wife that never used crying as tactic, she said: “Would you like a divorce?” Though it was not funny, I chuckled a bit—while recalling the verbal abuse just given. “No dear, I love you…” It was indeed abuse, and hurt her deeply, and led her to say later that evening; “You know don’t you that you broke my heart?!” I wondered how literally true it might be. Not forgetting it, and still wondering, it’s felt that is what happened to her heart—then and over long time.
She was a resilient spouse, though never forgetting by suppression an act of unkindness and misunderstanding. So I was aware of how deeply she could be hurt. It was an inhumane way to keep control and to seek the endurance level necessary to avoid becoming any burden to our children--and to avoid the drainage of the estate by the healthcare industry.
The effort (my effort) to provide the comfort increased exponentially as she continued to lose control of her throat muscles due to strokes.
A week into her final two weeks, she had been assisted to the lift-chair in the living room (provided by hospice). She had not spoken for a few days; then suddenly and clearly she enunciated to Shanthi, Jack’s wife, who was sitting in the room: “Oh, I hate this chair.” And that was one of the last clear utterances. For the next few days she only managed a clear whisper, a few whispered words after making an unsuccessful attempt at an intelligent audible word. Then, she could only whisper, and finally not a whispered word.
The last two words she whispered--after getting my attention with a loud vocal noise--she clearly whispered: “I’m sorry” and then again a weaker “I’m sorry”. With difficulty I had just lifted her into the chair. The labored whisper seemed like a final regret for being dependent and a burden. I said: “You can’t help it dear…” and probably added: “you’re my wife and I love you”. I did in deed and heart. Sometimes I would remind her that we were fellow travelers. But whispering became impossible too and those last two words on earth were ones of humility and gratitude.
But can you understand the guilt? I “broke” her heart by telling her to “shut up”. Some relief can be squeezed from that final whisper, and more from the awareness that Sheila when called upon could focus in solemn silence on a pressing matter before speaking.
When she was unable to speak, her pain relief came from Jack and Rich’s reading the signs. One night a few days before passing, Rich and Jack had stayed over. During the night Sheila, lying motionless beside me, made a loud vocal sound that awakened me. For a few nights I was getting some sleep while she was mostly motionless and speechless. It seemed like a sneeze, but the boys came in immediately expressing great concern. “It was like a cat’s scream” Richard said. Jack immediately gave her morphine—and it was timely in the routine. They understood the sign of need, whereas I passed it off as a sneeze that woke me.
How terrible was my lack of empathy and sympathy. I felt very guilty and was glad they were there. Jack, being a med-aid, did not hesitate to provide the comfort we knew she would want. He later said that he hoped he would be able to do with a relative the hospice-related comfort done in the workplace.
Jack had been there earlier on that last day. I’d moved her as usual from the bedroom to the hospice-provided lift chair in the living room. A few times the gait belt was used, but it was awkward, and hugging her was easier—for Sheila and me. It seemed to hurt less than the belt.
Moving her involved guilt too, for since leaving the hospital the next to the last time she had gained about 30 lbs or more. Now weighing about 133, my concern was that the weight and my growing lack of strength would be too much. That concern was reduced by her inability to eat—though her growing weakness meant she could give little and then no assistance.
“…she is dieing.”Jack helped me move her back to the bed in preparation for a bath by the hospice Aid. It was difficult to move her for she was unable to assist in any way. He was still there when the Aid came. When she was done, Jack and I had entered the room to take her back to the living room. The Aid quietly said: “I wouldn’t, I think she is dieing.”
It had only been 14 days since Hospice began. I wasn’t convinced, but submitted, though physically (room accessibility etc.) and mentally in the mode for prolonged care—but with lots of anxiety. However the aid had experience, and was being merciful…merciful to Sheila. Due to necessity, Jack left.
Something needs to be emphasized. She did not want to be hospitalized. During the last few years when she did allow it I was at her side night and day--except for times when Rich or Jack and wives would come for a few hours during which time I would take care of home business. During the last few years she was constantly pleading with me to take her home. The same was true the two stays at the nursing home. The pleading to go home was constant. When I did get her home she still pleaded to go home either due to morphine and/or strokes. Her pleas to stay at home cannot be overemphasized. There was no doubt about that. I was determined to help her with those wishes.
Jack, however, could convince her to go to the hospital. He could tap into her slightest hope.
At home, as in the hospital and nursing home, there was this uncanny experience: She might be quiet for a period, but if I started to fall asleep, she seemed to sense it, and unintentionally awaken me as though alerted to my departing.
“I think she has given up”—During the last hospitalization due to another obvious stroke, the MD asked her if she wanted to go home. “Oh yes”, she said. The MD quietly said to me, “I think she has given up.” I then ask her, “Our home or heaven?” She said “This one…and then the other.” She was unable to get out of bed then, but in hopes of going home she made heart-breaking efforts.
It was at this point that the MD informed me about Hospice. I relied on his experience. Sheila made a final effort to eat something in order to go home—having to lower her chin in order to swallow. With some help from me (eating), she managed to meet the percentage needed for the record. With the merciful aid of the two male nurses she was lifted into our wheelchair. Rich and I wheeled her to the Rialta, and home.
At home while in the bed at sleeping time, with me next to her, she would ask to go to the living room at inappropriate times of the night or early morning. Her persistence led me to say: “Sheila, go ahead.” She could not sit up unassisted, so eventually I’d place the wheelchair next to the bed. I would help her sit up, moving her legs to the floor (which was always painful for her—leg artery blockage and slipped vertebrae). Then she would sit with her hand on the wheelchair for maybe even twenty minutes attempting to move into it. But she could not get up and off the bed. Only after her exhausted attempts would she allow me to help her lie down.
Sheila’s medical history—Sheila’s mother told her that the in-home nurse had dropped newly born Sheila. The nurse was fired.
When a teenager Sheila had a chair moved out from under her by a prankster. The pain, she said was terrible. In my experience Sheila had a high endurance for pain without complaining. Headaches were frequent but she would not mention it—as though it should be obvious. Release from the pain was sought through activity.
During the last several years she had great difficulty walking. The discomfort was such that she could only walk very short distances. Finally, about two years ago, I reemphasized the matter and her MD had x-rays taken. The slipped vertebra was staggeringly obvious. He advised against corrective efforts due to her condition and age. When I saw how stagger it appears, at that time it seemed to me to be worth a try—she would not consider it. But I was able to use the x-rays to rescue her from hospital and nursing home physical therapists.
Age Five—As mentioned above she had measles and pneumonia. She was dieing and the doctor said it would be harder on her to be hospitalized. He said there existed then one hope and that was the new sulfa drug. Her father held her head back making her swallow it.
In early teens she got pneumonia and underwent x-ray treatments. She had more bouts with pneumonia too. The scarring would plague her the rest of her life whenever she had an x-ray for it was defensively approached as possible cancer.
Births—When giving birth to her first child, she begged to be allowed to sit up rather than lying down during contractions. The nurses tried to hold her down. She felt her back was going to break. During the second birth, Sheila hemorrhaged and was saved by being packed with ice. The doctor said she was very close to not making it. (She successfully gave birth to our twin boys).
Hospitalization for cancer--Early in our marriage she was diagnosed with cancer and had a mastectomy (not radical).
Hospitalization for Pleurisy —She was diagnosed with pleurisy and was hospitalized. During every hospitalization there was always great painful difficulty with IVs, and blood drawing by incompetent, inexperienced, and/or improperly trained phlebotomists.
Hospitalization for gall bladder surgery—She was having great difficulty with stomach gas. I would try to relieve her discomfort by pounding and massaging her back. The surgery did not resolve the problem. In retrospect I attribute it to stress. It could have led also to ulcers and blockage.
Painful teeth—After having her lower teeth pulled—the dentist left two stubs for false teeth. They became infected and she had to seek treatment at the Emergency Room. From that point on she had difficulty eating.
Hospitalization in New Mexico—The enlargement of her stomach led to hospitalization and the attempted use of the endoscope. The MD could not see the problem and sent her home. In further clinical visits no further efforts were made to find the problem. Her stomach continued to enlarge. She was suffering and it became increasingly harder for her to walk. Absolutely nothing more was done to find the problem. She used milk of magnesia daily—purchasing several bottles at a time. She started losing her hair. The skin on her legs got flaky.
She fell in a Los Cruces clinic that was on the hospital grounds and the administrator was so (unnecessarily) worried about being sued that he pointed out her scaly legs with an accusation that she needed a bath. It was a threat and distraction as if she was receiving improper care. I pointed out that they were not legs in need of cleaning because she had just gotten out of the hospital.
Hospitalization in Oregon—She was near death from a perforated ulcer. Only the pain and Jack’s persuasion got a nod of approval for the emergency room. When we took her in she was unconscious. She was going into shock and so near expiring that there was great commotion in an effort to get a blood pressure reading for surgery. It was do or die, but non-defensive reasonable trauma-wise nurse absorbed the responsibility. I was quietly appreciative. The assigned doctor and surgeon gave us little hope for survival during surgery.
The blood loss was corrected and Sheila recovered enough to go home. A review of the scan was underway. She was the type of patient that moved about and constantly tried to remove tubes. It kept me busy and concerned because it led to the removal of tubes and wires. The blood drawing was torture. This time, though, the surgeon used the central line, but often the phlebotomists would not use it.
Hospitalization and surgery again—Within a short time she was ordered back to the hospital because the scan showed a blockage in the duodenum area. A portion of her stomach was removed, and the duodenum detached and opened up by parting the membrane-like obstruction,and reattached to the stomach (Gastroduodenostomy). The Coos Bay Hospital had finally found one of the major problems.
This resolved the problem of the enlarged stomach and weight gain. This time, if memory serves well, she was given a central line, i.e., while anesthetized a tube was inserted from which blood could be drawn. (As a matter of interest when she was discharged the line was not removed. When I brought it to someone’s attention in a return visit to the hospital it was quietly removed.) I had learned the value of it--in her case. Knowing the emergency nature of the surgery, I made no issue of the need for corrective surgery, when she was rushed from intensive care back into surgery. I was very thankful that the surgeon performed under such an emergent situation for she was near death.
Sheila improved for a few years, and was getting around better in part because of weight loss--though always, as usual, fearing the return of the cancer. That fear diminished with the passage of two and half decades. She was regaining her healthy beauty, and once again becoming an attractive dresser. However during this time…
Sheila endures painful boniva infusions—IV efforts followed the same routine as when hospitalized. The inexperienced and/or incompetent first, then finally the most experienced--on each shift. These infusions were discontinued partly due to the trauma of the needle, and I think because there was a serious question whether she needed them. The clinic’s new technique for osteoporosis tests seem flawed to me for she was borderline anyway, very small boned, and not gaining weight. She endured the infusions in respect for her doctor.
Stroke and hospitalization—About three years ago she had a stroke. I found her with the hot opened oven clinging to an anchored oven-mitten to avoid falling. I just happened to come in. I grabbed her, carried her to the couch, elevated her feet, waited for a few minutes to see if it was massive, and then called 911. She was paralyzed on the left side.
Within an hour of the stroke she was in the emergency room. There was a strong influence to transport her to Portland. I asked Sheila if she wanted to go to Portland, in a stroke-like way she uttered “Noooo”. They heard it and told me about TPA (clot dissolver) and the risks. I said give it to her. Through contact with Portland it was determined she might as well have the TPA there, and the sooner the better, if willing. Waiting a few hours might be too late for immediate results. They gave it to her.
Within an hour she was regaining her ability to speak and the use of her left side. While there arterial fibrillations were recorded. Within three days she was eagerly walking out of the room to get home. She was mainly running from blood drawing.
She then began the blood thinning and blood test regime (coumadin).
Hospitalization for fractured hip—About two years prior to her passing, I was working in the carport when she called my name. No thump was heard, but she had fallen. Lifting her to the couch was very painful for her. After a few hours of hoping that it was not what it appeared to be, I moved her back to the bedroom--during which time she was adamant about not going to the hospital. The pain upon movement meant bathroom use was impossible. I had to improvise for the next few days while hoping it was something that would shortly heal. Putting her on a bedpan was agonizing.
Within a few days Jack arrived and we attempted to place her on the bedpan for a bowel movement. The pain made it hard to get her clean. He talked her into being transported by the EMS. She then agreed, but again due largely to the pain upon movement.
During those few days in bed without moving she developed a bedsore (which was not noticed in the hospital). Jack later alerted me to the seriousness of it. My daily treatment, suggested by Jack, over a few months finally led to its healing.
In the emergency room the x-rays did not reveal the problem but her pain revealed more. Fearing she would be sent home, I was relieved when the scan showed the fracture. She was admitted and in a few days scheduled for surgery. Pins were to be inserted. Preparation for the surgery called for an IV.
The nurse made an unsuccessful attempt to insert the IV. Her eyes were tearing as Sheila cringed in pain. The anesthesiologist came in to see what the delay was, and he asked the nurse if she wanted him to do it. She quietly nodded yes. He used a salve (probably something like EMLA) and painlessly inserted the IV tube.
There was obviously some administrative and staff conflict over the IV situation. The anesthesiologist had no problems with a technique, but with the hospital staff there seemed to be an aversion--like quoting (inaccurate) infection data to justify lack of training. During that stay a nurse had me mask-up to help her change the dressing around the IV to avoid infection.
The IV tube had slipped out on this occasion of her second trip to surgery. I was distracted while a nurse with an attitude tried to hurriedly replace it, knowing the anesthesiologist was about to arrive. I knew Sheila was suffering. When he left the room and passed where in the hall I was being distracted with forms releasing the hospital from liability, he gave me that corner of the eye look of disbelieve over the ridiculousness of the whole matter.
After the surgery, the surgeon told us it went successfully, but wanted to tell us that he thought Sheila was in the beginning stages of senility. I thanked him for his observation and the forewarning, but told him about her history of strokes (the MD had told us she had had several). Sheila’s pleasances and laughter was being somewhat misinterpreted. The surgeon was correct about symptoms but I think incorrect about the main cause.
Hospitalization for nosebleed—During her recovery from the hip surgery her nose started bleeding. It was sometime after midnight. It seemed to have stopped after some hours, but then around bedtime the next night it started again. There was no doubt in my mind it was due to the blood thinner (and the mobile was totally electric). We tried homeopathic tactics but nothing could stop it (head back, some pressure to the side of the nose). It continued, and yet she refused to go to the hospital. It was the weekend.
She had just purchased a new bedspread and sheets. They were getting bloody. That beautiful bedding pleased her. But it was stressful for me in the attempts to keep things cleaned up to avoid permanent stains.
The blood was streaming down the back of her throat. Finally, it was so bad that she yielded. Still confined mostly to the wheelchair, with a tray under her chin, I got her into the car and when we pulled up to the emergency doorway, she was so bloody the immediate care was obvious.
I was told she had loss so much blood she almost did not make it. A plug was put in her nose in the emergency room and due to the blood count she was admitted. The plug was not high enough and though slowed the bleeding continued. Within the next day or so she was scheduled for surgery to see if it was something that would need more than a plug. The plug was placed higher this time and the bleeding stopped.
Her doctor took her off blood thinner, except for some aspirin. I wondered though about the possibility of another clot from the atrial fibrillation, and whether the unmonitored blood pressure might be such as to cause another hemorrhage. It was almost impossible for me to get a reading, so I went by the neck pulse (carotid pulse) to check for atria fibrillations. Sometimes I could see the pulsations. Sometimes I had to feel for it, and there were times when none could be found. When fibrillations were seen or felt I gave an extra blood pressure pill—as per doctor.
Another nosebleed did occur within several days after the plug was removed—during a weekday. This time though with a prescribed nose spray (sinus irrigation) it stopped.
A note: During ultra sound testing I was allowed to observe. I watched closely, and notice that once in a while a valve leaked. No one mentioned it, but one day I mentioned it to someone at the hospital and they looked at the record. She said that I was right. Nothing more was said and I assumed that at that age it was not all that unusual. The leak would occur like every tenth valve closing.
Final hospitalization for final series of strokes in the last several weeks—Sheila had been doing fairly well, though she got around with the wheeled walker, and when we went out the wheel chair was usually used during longer shopping periods, etc.
The Rialta--One thing I did that made life easier for Sheila was to get a Rialta (when CD interests dropped to practically nothing). For a year or so it became not only a self-contained disability van but also a most delightful experience.
We made frequent trips to the ocean shore. She would say, “I love this Rialta.” The wheelchair and walker fit in nicely (made easier by removing the wheelchair hand rings). We often ate in it. I’d modified the bath to make it easier and safer for her. The pivoting passenger seat made it easier for her to slide into, but when that became too difficult she occupied one of the two middle seats.
The Rialta was a good investment. At 11,500 the minor work it needed increased the value to nearly 15,000. The same day I decided to look for one the Bargain Finder for that day had one pictured. It was purchased that day. It seemed providential.
The day of her last trip (other than one where I tried to anchor the wheel chair so she would not have to be removed from it) went this way. It was the first of June 2013. We decided to go to Bi-mart.
I had constructed a ramp that went from the porch to the Rialta. A hanged ramp would lower folding into the Rialta cabin door. It worked well for either a walker or wheelchair. She loved it—under that situation anyway. Just inside there was a strap to raise herself and move to the seat. The Wheelchair could then fold to the side.
It was about 10 AM. On this trip we had the wheeled-walker. It was the sort that had a place to sit. Sheila, with my assistance, made it down the ramp. We got midway across the frontal lane when it started to rain. I said: “Would you like to sit and let me get us across?” She hesitated a little and with my encouragement she sat down on the walker. With care I moved the walker toward Bi-Mart. Swinging the walker around, the outer two wheels hit a rut where the cement and asphalt joined. The walker tipped and Sheila fell partially out breaking her fall with her left hand and knee, while I had grabbed her too.
I tried to get her back on the walker. A concerned young lady saw our situation and offered to help. I asked her to please hold the walker. Concerned about possible injury to Sheila, the lady said: “Wait”, as though there was a safer way, but I had already lifted Sheila unto the walker.
I knew that it was important to get back in the Rialta as quickly as possible, because the last thing she, we, would want is some defensive insistence that the EMS be called which might put her in the hospital. I thanked the lady and we returned to the Rialta. Sheila seemed all right though her hand and knee were bruised. I felt so ashamed. Guilty is the word.
We returned home immediately. She seemed ok until mid afternoon. As usual she sat on the love seat, her back supported by a very large pillow. She had received a phone call from her daughter Beth. I had just sat down on the longer couch to take a few breaths and rest. The unusual movement to break her fall affected my right shoulder. It had been injured while working several years before.
She placed her right hand down next to her and said: “Please come sit by me.” I might have been tired, but that was no excuse for saying: “What?” Again softly: “Please come sit by me.” I answered: “There are things that have to be done”—as if to prevent a growing dependency. Her quiet request was being postponed to make a point.
After a few moments I got up and went to the kitchen to do dishes, and then, in my good time, returned and sat down beside her. I sat there for a few moments and looked at her lowered head, spoke to her, but she was not responding or acknowledging me—like she has gone to sleep. I sat beside her for most of the evening until there was no doubt that she had had another stroke. I considered calling 911, but her doctor had told me that the TPA would not be used on her again.
She came out of it a bit before bedtime. Mostly with my efforts we got back to the bedroom. I put her to bed. It was always painful for her when I would move her legs onto the bed. It was on this and other occasions during the night she would hallucinate. She would wake me quietly saying something like: “Is there a child standing there.” I would assure her that there was not and that it was probably due to medication. Her response was that she would rather be dead than live that way.
I continued her medications, which then included a daily aspirin. For a few days it seemed she got a little better, but there was no doubt her condition had deteriorated. It was obvious to Jack too when he arrived a few days later. I explained the events.
Although hesitant, I allowed Jack to call the EMS once more. They transported her though she gave no yes or no answer to whether she wanted to go to the hospital. In another way, I approved, having no other answer. And as a result it led to the hospice referral.
(One day early in the two-week period the Hospice chaplain came. Sheila was in the living room. He sat down facing her and introduced himself. In response to his presence and outstretched hand, she put her hand forward making slow finger-reaching movements. He looked at me and asked why she was doing that. I said she was partly hallucinating. But even so she was being affable.)
This time while in the emergency room when the phlebotomist came she was again needle probed. I asked her doctor’s substitute why Sheila hadn’t been given a central line. He said because a doctor did not order it. He agreed to order it and it was done, i.e., I didn’t make sure EMLA was used. Sometime during my brief absence the line was inserted.
I did not see how it was done but she was very upset about being in the hospital—as though she had been hurt. This time nothing much was done for her except observation, tests, and medication and a few painless shots in the abdominal area. She was allowed to remain in the hospital for about 7 days and no more blood was drawn. We had refused further needle probing. When a nurse was asked why blood was not taken from the IV tube (central line) the reply was something about the valve needed flushing, or might need it.
I was with her night and day for those several days and thankful that she was receiving toilet care. Night and day she pleaded to go home, or wanted to get up—making the effort. This was the stroke that left her unable to swallow properly and cough. Therapists tried to assist, but the most help came from the male nurse that taught me to try to get her to keep her chin down when swallowing, partly to avoid infection from food particles getting into the lungs.
Her days after this last hospitalization have been addressed above. The MD was right in referring to Hospice.
Paradise—Luke, the physician, wrote, maybe recounted, the significance of Jesus’ words “…today…paradise”.