From Home to Hospital in 1997
In September 1997 my aunt, who was 84, took a bad fall in her apartment where she had lived for 30 years. She had major surgery to her left leg. I was told by the surgeon the bones were very osteoporotic, and the best he could do was place four steel posts to hold the leg together while hopefully it healed. There was a post-surgical decline in her health, I was told by a resident MD that perhaps blood clots were causing this and to expect the worst.
She was moved to a private room and expected to die. Two weeks later I was contacted by a young resident I had not spoken to ever before and told that they were thinking of transferring her to Palliative Care (PC) at St. Mary's, of course I was rather shocked at the abruptness of the call, however, did not feel I could object, two or three days later, moved to PC at SMOL... In hindsight, I believe she was over-medicated in KGH and her reaction to that gave an appearance of impending death. - just a very uneducated observation.
(At the time my aunt was in KGH with her problems, my father was admitted with pneumonia and I was informed they suspected lung cancer, I was told that very bluntly at the nursing station and was asked about my level of resuscitation orders. So I was going from one floor of the hospital to the other with what appeared to be critically ill loved ones. My Dad was discharged after a week and no cancer in the lung was found.)
Palliative Care: October 97 - January 98
Approximately a week after arriving at SM, my aunt's level of consciousness imporved to the point that we were able to have a "family" meeting (my aunt and I) with the PC mD who when asked by my aunt what was going to happen to her, he said that he expected she would not see the New Year, that she had bone cancer. To the best of my knowledge, she NEVER had that diagnosis in KGH, and if she did, I was never informed of it nor was she. I was told her bones were very osteoporotic by the surgeon who was in there and had a good look at them.
Condition again took a downturn, I guess it would with that kind of definitive move and news. She arrived at SMOL from KGH with what they discovered as a C-Dif infection which affects the intestines and that took months to clear up. She reacted badly again to meds they gave her, hallucinations, bad dreams, nausea. In November I was called back from a trip to Connecticut because they did not think she would live, I was unable to take a planned trip with my husband because of the unknowns around her condition. I had been visiting her almost every day since September and if not visiting her, maintaining her apt and financial matters, she would smile and call me her manager. I made about at least 3 phone calls to the Dr. as I felt that she was not that critically ill, but rather suffering from lack of nourishment. As it turned out she began to have convulsions as a result, I was told, to a lack of potassium, a young student nurse began the action on that, I don't think if she had been so observant anything would have been done about it. Nothing was being done of course about the badly broken leg that was still held together by 4 steel posts.
I began to feed her yogurt which was what she asked me for, she had difficulty swallowing because it had been quite some time since she had had anything substantial. After Christmas, she began to improve such that one day a nurse put on the TV in the room for the first time and my aunt began to eat meals with help. On January 21, I received a call at 11:55am at work that they were moving my aunt oout of PC to a room in another part of the hospital, I was astounded by the suddenness, no warning, and when I asked them when... they said in 5 minutes.
Long-Term Care: 1998 - September 2000
My aunt of course was confused about the whole thing and I wasn't any better informed than she was, expect that we'd have to begin paying for her being at St. Mary's then. She had not been back to her apt. since she left it the night she fell in September and now it came time to face the reality of, for lack of better words, getting rid of everything and selling her car that she loved. I wondered what direction everything was taking and was told that I could request a family meeting. I met with about 10 healthcare professionals including the Dr. she had at that time, a fairly intimidating process. I felt kind of guilty about something but didn't know quite what. One question I remember asking was would she need clothes as I was about to start the task of disposing of all of her personal and household belongings, I was told she would never wear clothes and that she had bone cancer. I challenged that statement saying I had not heard anyone make that diagnosis nor had there been any tests done for it to my knowledge, the response I got was (After the MD searched through some papers he had with him), "well, it's in the notes", I was dumbstruck by that statement. However, I made it clear to them that now that she was out of PC I wanted the best treatment she could get and I didn't want anyone to give up on her (or words to that effect). In hindsight I was asking that she be treated actively and as a person who could get as well as they possibly could under the circumstances. Her leg was still in the steel posts, but she wanted therapy on other leg, she wanted to regain the use of her hands which she had lost over the past months probably due to lack of nourishment and use.
On March 21 of 1998 most of my aunt's belonglings were disposed of and I stood on the balcony of her apt and watched tha uction company's truck pull away with a lifetime of memories. My aunt had lived with and cared for my grandmother all her life and it was both my aunt's and my grandmother's possessions I had to say goodbye to that day. However, on my husband's advice I did keep some clothes.
The time came to deal with her badly broken leg, it was eventually re-xrayed and of course had not healed, what, they would ask her regularly, are you going to do about that leg. Options were presented, a steel post from the hip to her ankle, or amputation. On June 3rd my aunt had her leg amputated and began dealing with another change in her life.
She began getting dressed, getting her hair done, she began going to the computer room and regaining the use of her hands, she would go and have her teeth cleaned at the dentist at KGH, she would go outside in the good weather and feed the birds. She made me a card once that she'd done on the computer, my aunt was 86 years old at that time. She began going on outings, she began to be an active person in what was to her home and her small community. The staff took great pride in what they had accomplished with her. She had played bridge in her other life and began to play bridge again, what a distance she had come. As a veteran of the Navy, she was asked to lay the wreath at the annual Remembrance Day service at the hospital. She was so proud when the legion sent her a gift basket. She had a home now and while it was not her own home, she was relatively content and strove to the best of her ability to be productive and active, she even relieved me of my job of doing her laundry and took that on herself. She did not want to be a burden to anyone and no one player a bigger part in the improvement that she made than her and God. The bright spot in her life was her electric wheelchair, which she took great pains in selecting and learning to operate. She was a great driver, she could back into elevators full of people and get around in tight spots, she always loved to drive.
But the hospital restructuring was already beginning to happen. We learned St. Mary's was going to close, but felt that we would only have to nmove to the new facility when it was built.
In July of 1998 my Dad was diagnosed with colon cancer, the same cancer that took my mother. He had surgery in September and had to move to a retirement home as he could not cope alone. Being the only child, I had to dispose of some of his belongings, and his apartment and make a new home for him in the retirement home, as well as manage his financial affairs. When he was discharged from KGH to the retirement home, CCAC provided help in the retirement home for him. He had a colostomy and was an insulin dependent diabetic, eventually he was unable to walk at all due to neuropathy, when he tried to, he took some bad falls. A physio tried her very best with him but to no avail, he had given up. He was wheelchair bound too. In the summer of 1999 it became necessary to transfer my Dad to another level of the home where there was a bit more supervision. But his "care' in every sense of that word came from his Red Cross Homemakers and the VON provided by Community Care. In all my experience with the different institutions and caregivers, the most excellent, kindly, responsible care came from those two groups. I do not have the words in my vocabulary to say what it is in my heart about them and I am so grateful my Dad had them.
In the summer of 2000 with my aunt in St. Mary's and Dad's health failing I myself started to have some health problems, although I had only missed one day of work in this time period I was experiencing severe lower back pain so much so that one day at work in July, I thought my boss was going to call an ambulance to get me to the hospital. I had a bone scan done in August. The results of course not due until September.
On September 13 the retirement home had "arranged" to have an ultrasound done on my Dad's abdomen. I arrived at the imaging lab only to see my Dad in his wheelchair with the Jack's taxi driver pushing him in the back door. I asked where the escort was for the ride in the taxi, where was the person from the retirement home? I called them only to find out the escort had been given the wrong day and also that there had been no return trip booked for my Dad to get back to the home. I was very upset and my poor Dad knew it. So unable to get him up on a table, the technician said, we'll leave him in his chair and she'd do the best she could with the test. My Dad never made a sound, never complained, just rested his head on my stomach as I stood behind him while she ran the test. Eventually, the retirement home's own bus turned up for him to take him back.
On September 14 I received a call from SMOL, the upshot being "your aunt has to move, she has to go somewhere else." My aunt was being asked to leave her home and community at 87 years old. I was being asked to make a move I wasn't able to get my whole mind around as my Dad was very ill. It was out of my hands really, they wanted her out and they wanted her out as quickly as possible, the only person I dealth with was the discharge planner. I decided on a Nursing Home (NH) (that I had investigated at one point for my Dad) close to where my Dad was, I would be going back and forth so this had to be considered. By September 20th a mere 6 days after we were told my aunt would have to leave SMOL, a bed had been found at the NH and the move was arranged for September 23rd. The "Arrangements" being, Jack's Taxi was booked to pick up my aunt at SMOL and take her to the NH. I had to do the rest, pack up everything and move it.
Friday, September 22nd
On Friday, September 22nd I went to see my Dad's Dr. about administering a morphine patch, I asked: was I giving up on him too soon, was there a chance he could recover like my aunt had in 97/98, was I doing the right thing by allowing the morphine patch. I was assured I was. On Friday, September 22nd I also went to check out the room where my aunt was going at the NH, on Friday, September 22 I went to my own Dr. to get the results of my bone scan, nothing had showen up, but he did say that I looked very tired. On Friday, September 22nd I told the woman at SMOL discharge planning that my Dad was dying, I hoped I could be with him, however, I had to move my aunt out of SMOL on the 23rd. She wished me the best of luck.
Saturday, September 23rd
On Saturday, September 23rd, in the pouring rain at 9am my dear aunt with only my help and that of the Jack's Taxi driver, not a goodbye from the staff or help from any of them took her last ride out of St. Mary's, I followed behind in my car. On Saturday, September 23rd, I sat with my Dad after helping my aunt. I sat with my Dad until 3pm when I returned to the NH to check on my aunt. Alone and looking forlorn she sat in a corner of her room. I couldn't stay long, I wanted to be with my Dad.
On the evening of Saturday, September 23rd one of the homemakers who had been his primary homemaker said goodbye to my Dad for the last time, she was off for the rest of the weekend... positioned him comfortably in his bed. Another homemaker had been sent to spend the night with him. I went home at 10:30 in the pouring rain.
Sunday, September 24th
On Sunday, September 24th, 2000 I got up early and relieved the homemaker who had stayed all night and wanted to stay on with me for the day, I told her I was fine, and to go. The VON came and checked his colostomy and vital signs, gently put zinc on his ears as she said they often forget about the ears, but people put weight on them too. They turned him to make him comfortable, I quietly read the bible at his side, put vaseline on his lips and swabbed his mouth. I told him that all was well, and that I was there and of course that I loved him very much, I hope he heard me. By about 3 in the afternoon I thought I should go and see my aunt, I left my Dad and visited with her for about 1/2 hour. Returning to my Dad I sat and counted about 9 seconds between his breaths. The homemakers came in around 5:30 and said they'd be back to do his evening care. At 5:50pm I got up to put a damp cloth on his head, water in his mouth and vaseline on his lips, I told him he'd been a good soldier and how proud I was of him, to my astonishment, he took his last breath.
Nursing Home: September 2000
On Monday, September 25th I had to go and tell my aunt her brother had passed away. She was heartbroken. The NH was kind enough to transport her to his funeral. It would be a reunion of sorts for the remaining members of that family of 6 children. My aunt, my uncle and another aunt from Brockville were all there for my Dad, their brother's funeral.
Returning to the NH that day, my aunt was understandably upset, she had an accident in her wheelchair, she caught her leg in the bed and couldn't shut the wheelchair off, the leg was gashed and eventually became infected so much so I had to take her to KGH emerg later that month. She was very unhappy at the NH I had taken her to, we decided to apply to get her into another facility.
On December 4 I got a call from the NH - your aunt has broken her leg, she's down at KGH, the leg was operated on. I expressed my great concern to staff at KGH that she was in danger in the NH, she had already had her leg gashed and infected and now broken. I felt the NH was not really equipped to deal with her and asked them not to send her back there. Well, that fell on deaf ears as I totally expected, in fact it was suggested by a very young resident Dr., that if I didn't feel the NH capable of looking after the wound on her leg which was left exposed by a little window in the cast, perhaps she could teach me how to dress the wound and offered further advice that sometimes families have to expect to participate in the care of the elderly.
My aunt was discharged and returned to the NH without so much as a phone call to me. I got down there on my lunch hour only to find her bed empty. I called the patient advocate at KGH got a sympathetic ear, but never a phone call back or a letter or inquiry about to my aunt's well-being.
After a couple of months of general decline, my aunt had another trip to make to have her leg x-rayed on February 13. I called the NH on the 12th to make sure of the arrangements I had asked them to make for transporting her, after the experience with my Dad in September, I was leaving nothing to chance. Well, they were going to send her in Jack's Taxi - I had requested Quality Patient Transfer - I was not satisfied with the escort arrangements and asked them to double check that too. By 4pm in the afternoon it had been taken care of. Had I not called they'd have sent by that time a frail elderly lady whose only leg stuck straight out in a cast in a taxi for a medical appointment at HDH.
On Thursday, February 15 after months/years of frustration, with no help or guidance from anyone with respect to my aunt's case, I turned to the Council on Aging. They asked me to write everything down. I've done the best I could but I know I have missed many little details, however, my time is short today, I am preparing to attend a funeral, I have actually made all the funeral arrangements, chosen the casket and cremation urn, selected the clothing for the deceased, picked out the flowers, arranged what music to have played, contacted all the family and will this coming weekend again be disposing of a loved one's personal belongings. You see my aunt passed away early Sunday morning and while I was not there at the very end, I had arranged for what could not have been a better substitute, a Red Cross Homemaker was holding her hand as she took her last breath.
My only question is:
Why was I forced to move my aunt without adequate assessment by "SOMEBODY" who could ensure her safety and the appropriateness for her of her new home? I was under great personal duress about my Dad, unable to protect my aunt properly. The move n my opinion, (placing no blame on the Nursing Home, they did the best they could) cost my aunt her life.
February 20, 2001