Friday, February 16, 2007

Dad’s Passing

At 12:15 they came in and repositioned him, shifting his weight to his other shoulder. The PSW offered me tea, coffee or juice and I asked for some tea. He brought me a tray. I held dad’s hand, rubbed his boney shoulder, rearranged his blankets and looked at his mottled hands again. I counted his breaths at 12:50 and he was breathing 7 times every ten seconds. By 1:00 a.m. he was up to eight breaths. At 1:15 I heard Cheynes-Stokes breathing. His breathing stopped for about 10 seconds or so – it was hard to tell as time stopped for me. It wasn’t upsetting at all. I sat beside him holding my breath. When he started breathing again I was upset. I didn’t know how much longer I could take this! He needed to finally be out of pain. Mom, his parents, his cats and dogs; all were waiting. I had three cups of hot tea and made several visits to the bathroom, darn glad I had had the toilet seat changed back. I think I nearly took out the PSW in the doorway, the bathroom door being behind the entry door, when he came to check on us.

The PSW told me that he quite enjoyed caring for my dad. He told me he gave dad pain pills as needed on those nights that dad was loudly vocal, some days they could hear him singing down the hall and around the corner in the nurse’s office. They made sure that they gave him the pills before they moved him. I was grateful. Dad appeared uncomfortable every time they had put him into the swing lift for several weeks now.

He spoke of how they had had to watch him carefully. Dad liked to get out of bed in the night. Holly, his first charge nurse, found him a bed with raised sides. Even then dad would position himself at the end of the bed, feet hanging over the side. They had to laugh. He was a challenge, but The PSW thought that he must have been a good man in his prime. Always polite and thanking them for things they would bring him.

I took a break, the room was dry and I needed to stretch. I walked out into the hall. Here was Donny, a resident, using his feet to wheel himself back and forth across the end of the hall. It looked like a Monty Python skit. Back and forth in the darkened hallway. I asked The PSW if Donny was always up at night! He said no, that likely he had slept all day. Back into the room I went, trying to get some sleep. I was on edge and wary.

At 1:24 dad had an apnea episode and stopped breathing for two seconds. I thought back to a time in the Manor, when I was running back and forth between work and home and Gravenhurst, Dad said I looked tired. Then he patted the bed and said I could sleep there! Now, here I was keeping him company at last. He had his way.

I had another flashback. When I was a child, I was afraid of the dark hall I had to travel to get to the bathroom. I remember that there was a red light in the base of the light, a reflector of some sort. It scared me. I would go and stand and wait beside his bed until he woke up. He would ask, “What is it, Jen?”
“I have to go to the bathroom.”
“Well, off you go then.” I think I just need to know that someone was there for me. I was glad to do the same for him.
I settled back into bed around 3:00 a.m., feeling that it would be a bit longer. I drifted off to sleep. I jerked awake after 4:20. I turned my head slowly. All was quiet. Too quiet. I could see that dad’s colour had changed profoundly. Nervously, I approached him and felt him. His face was cold. He had stopped breathing, with his eyes one quarter open, as they had remained for hours. Suddenly, The PSW came back in. He said he had just checked in on dad and found him dead – he didn’t know whether to wake me right away or not. He went and told the nurse. I was glad to get some sleep and there was nothing I could do.

The nurse came and checked dad. His core was still warm and it hadn’t been long ago that he had passed over. I felt as if a burden was lifted from my shoulders. No more guilt, or worrying over whether I had done enough or done the right thing. I asked what had to happen. The doctor they would call at 7:00 a.m., there was no rush. They had rounds to finish and I decided to pack up dad’s room. I couldn’t face going back there that day. They told me I had a couple of days to clean out his things, but felt awake and I didn’t want Brian to lift anything. I carefully removed his Valentine decorations from the door and the window. I went into the bathroom and through out his toiletries and other personal items. I checked his drawers, folded up my comforter, placed the family photos into the pillowcases. It was a two-step process, walking through two passcode protected doors, one floor and a locked front door! They lock the door at night and, having gotten stuck last week, I knew it was hopeless to try and figure out how to get out before the morning staff came on. The PSW came in and washed dad’s body while I took things down to the car.

The PSW helped me out with some of the things. It was a lonely process going up and down to the second floor. I loaded up the car, under the starlight, and drove home. It was quiet and peaceful. I didn’t phone home, I knew Brian needed his sleep. The place was quite dark, the snow crunched under my boots. I unloaded just dad’s plant, not wanting to let it die in the minus 15 degree Celsius cold. I didn’t bother bringing anything else in. These things would wait until dawn arrived. It was 6:00 and I saw Brian at the top of the stairs. I asked him if he’d make me a coffee. The cat was halfway towards the stairs, not knowing if she was going to be fed or if I would go to bed. Brian went to get his robe and I followed him upstairs. I said, “He’s gone”.

Brian responded, “I thought so.” He made me coffee, as he does almost every day, and I started to make a list of things to do. Writing always helps me. We sat and talked. Brian pointed out that we would be hard-pressed to get over the habit of giving visiting dad so much of the time. I began to make a fire in the wood stove. I thought, as I often did, that I could phone mom and tell her how well I had done. Foolish thought, but a habit I cannot seem to break. I knew that she was in her new home and getting things ready for dad! The house was quite cold, as we turn down the thermostat at night. The fire made it cozy in no time. We talked.

By 7:00 o’clock I phoned my daughter, knowing she had to get ready for work, and to tell her the news. I woke her husband and we chatted. I explained that Robin and I would not be doing a funeral until spring. JL said that Caitlin wanted to come, but with my brother arriving Saturday, we would cope. Jesse was to visit on Wednesday, and that would be great. We had the roof shingles to finish and chores to take care of. I have found that the time immediately after a death in the family is the easiest. With things to do and comforting words of those one meets there is a sense of purpose. When everyone goes home and the void begins where the loved one used to be – that is the most difficult. A funeral demands much time and energy.

I made phone calls. Made an appointment with the Funeral Home for the afternoon, I gathered papers; birth certificate, certificate of marriage and so on. By 9:00 a.m. the roofers were back. The cat was quite perturbed. Brian said she was quite worried about the BIG squirrels on the roof. She would sit there and look up at the ceiling with great concern. The banging went on all day. It began to irritate me after some time. I mentally kicked myself. Here are these men working in sub-zero weather giving us a new roof. Eventually it was time to go into town for the errands.

Brian and I went into town for our appointment at the funeral home. By then dad’s body had been brought from LTC to the Funeral Home. He went into LTC and gathered up dad’s clothes for me while I met with Cathy, who worked there. We planned out what we needed to do, more papers we needed to find, and I gave her a copy of the obituary notice I had written with input from my brother. We wrote up a contract for services. My brother had begun this process for mom last May, by the time I had returned from Toronto. It was my turn.

There is a set form, with lines for the various components of a funeral arrangement: consultation, fees, funeral home reception and supervision, procuring and completion of documents, embalming, shrouding, use of facilities, memorial stationary, visitor’s register book, transportation, transfer to the crematorium, coroner’s certificate, death registration fees, casket and urn. I, as executrix, had to sign the contract. We priced various urns. Then Brian and I went and saw dad’s body and said our goodbye. He would be cremated immediately. That gave us time to plan the memorial service later in the spring. In hindsight I shouldn’t have gotten the register or the thank you notes from the funeral home. The register was barely used. I did not call all of dad’s friends – I assumed people would know from the announcement in the post office and the newspaper. What a mistake, I think. I could have picked out a few very special notes.

Brian took me out to dinner. It was good not to have to cook and think logically in one area. We had a living room full of dad’s things and there was lots to do. We watched a DVD that evening. Escape was welcome. The problem was I fell asleep about 10 minutes into it! We decided to go to bed. Neither of us had slept well the previous night.

Thursday, February 15, 2007

Dad's last few hours

Thursday, February 15, 2007 Prepare the Way
The phone rang at 1:00 a.m. The PSW had gone in to visit dad, which they did hourly, and he seemed to be very badly off. They would touch his arm and speak his name. He was unresponsive. They thought I should know. They were not sure if I should come in or not. They were not sure how imminent or how quickly he might leave us. They agreed to call me back at 3:30 and keep me updated. They didn’t call back and I fell asleep around 3:00. I woke at 7:00 a.m. and hurriedly got dressed, had some coffee and packed up a blanket, a thermos and some other things.

I had gone into the Leisureworld around 8:30; I saw Denise in the hall and asked if she could tell me about the rest of his night. She hadn’t had time to read his file but promised to get back to me. I went into his room. He was lying on his back with an oxygen tube in his nose. Apparently, even when mouth breathing enough oxygen gets into his lungs as he sucks in the air. Dad was mouth breathing, with some rattling in his chest. There was paraphernalia on the table beside him. I had no idea what it all was for. His eyes were one quarter open and unresponsive. Large half Q-tips, a container of Vaseline, another of mouthwash, I thought.

I had brought in a big comforter, which was washed and returned later, along with several pillows and pillowcases. They proved invaluable later on. The PSW asked if I wanted him to go to breakfast or if I wanted them to bring in a tray. I knew he couldn’t eat. I had tried giving him some water on Tuesday and he could not suck from the straw. At this point he hadn’t had anything to eat or drink in twenty-four hours. He can’t eat or he would choke. From time to time he would hiccup. I thought he might have had a slight convulsion. He kept on blinking, but did not say anything. I dug under the covers and found a hand to hold. Surprisingly it was warm. His feet, remarkably, were not so swollen anymore. This was peculiar as this condition had begun in the summer and had not gone away despite diuretics and his special socks.

There was a call in to the doctor, who did not work on Wednesdays but would be in to his office later. The staff was kind. Finally, at 10:00 a.m., we got an order for dad to have injections of morphine, 2-5 mg every two hours, as needed. It was such a relief. They gave him 2 mg and he seemed more comfortable. Some workers thought he was not in pain, but I knew better. I knew him so well by now. He was in a hospital gown. I asked about the toilet seat, which had been changed for a higher one. He hadn’t been on the toilet for months. I asked if they could put a regular one on now, as I knew it would be a long few days. The custodial staff needed a nurse’s order to do so. We made it so! The only public washroom that I knew of was on the main floor. This would make it very handy for me, as long as no one walked in on me! In fact, I nearly took out a couple of staff members when I came out of the door a couple of times.

Audrey came up to the room and told me that the Director of Care would be in to see me before long. The PSW said to hit the button if anything changed or if I needed anything. They looked after me. They had put a radio in the room and they were playing some old songs. It was comforting. They shifted him at 10:30. I decided to go and get something to eat. Brian had poured me a coffee in his travel mug and I knew I was getting light-headed. I was scolded affectionately for not staying out and having a relaxed breakfast, but I wanted to get back to dad. I had my second cup of coffee and breakfast sandwich in dad’s room.

I phoned Brian. He said he would come in around noon. Then the Director of Care (DOC) came in. She found me a good chair, found herself one, and we settled in for a chat. She explained many details to me; outlining what I could expect in the next few days. She said he could have his morphine injections until the end. It was a judgment call when he needed another injection, but I was the one in the best position to make that decision. It is far better to err on the side of comfort, rather than too much. He had been aphasic for days. She explained about the oxygen. If they don’t have it they panic because they cannot breathe. It is a comfort measure. She explained that the body could go 3 minutes without air, 3 days without water and 3 weeks without food. Dad was 2 days without water at this point.

The DOC explained the symptoms of approaching death; sleepiness, confusion, decreased appetite, decreased urine output, lack of response to calling their name. His breathing vacillated from regular breathing to irregular. With cranial involvement we can expect apnea. She explained Cheynes-Stokes respiration. This is the gradual increasingly quick intake of breath, followed by an episode of apnea, stopping breathing, for 15 – 45 seconds. As the body shuts down, it stops sending oxygen to the extremities. She said to look for cyanosis, which is the discolouration of the skin due to deoxygenated hemoglobin in blood vessels. Sometimes the organs shut down or the body sends oxygen to organs rather than the extremities. There is mottling in the hands or feet. Once this occurs, death is imminent - within 72 hours.

A web site entitled, “As Death Approaches” says: “The fear of the unknown is always greater than the fear of the known” and that is true. It was comforting to know what to expect, not that all of this has to occur. She reminded me to look after myself, to take regular breaks. She said to talk to him and let him know I was there. She felt for his heartbeat, which was weakening. She showed me how to do mouth care and told me that the mouth care he had received so far was excellent. Staff came in and helped them check his position. Dad was moaning and he was twitching. He could have been having more seizures. His forehead, where the tumour was growing, was a brighter red than elsewhere.

Brian arrived to spell me off and I went home for a break. He phoned on his cell phone every few hours, while I supervised the roofers and chatted with them. At 5:00 the clouds began rolling in and we were having snow squalls. I told Brian to come home. I had put a phone call into my brother and was waiting to tell him what was going on.

I made it back to the hospital for 5:30 p.m. after picking up a Sub sandwich and a couple of juices and potato chips – to hell with the weight management. At 5:50 the doctor arrived, he decided to pop in and see if I needed anything. The RN, came in at 6:50 and every hour until she left. She checked him and asked if I thought he needed more morphine. In hindsight, I wish I had given him some. I didn’t see evidence that he was in pain, but felt that he had no way of letting me know. He was still blinking; his forehead and hands were red. He was breathing 5 times every ten seconds. I don’t know why I measured it. It was good to have something to do, other than the mouth care.

I rearranged the big easy chair twice, eventually pulling it out and putting the comforter and three pillows on top. It was comfortable. The oxygen tank pulsed all night. That in and out was a form of white noise that canceled out all the noises in the hall, people, and pages for various staff members, residents wandering the halls. I had brought my computer with family photos on it and was sorting the photos, traveling down memory lane and remembering all of the wonderful things dad was and had been for me and for many others: father, husband and volunteer. At 8:00 p.m., he was breathing six breaths every ten seconds. By ten p.m. I had inhaled my food, had one of my juices and watched four CSIs in a row! It was bizarre and most surreal sitting there checking him every so often. It was comforting watch the TV and removing myself from the situation from time to time. It was a breather of sorts.

I went closer to dad, for the umpteenth time looking for signs. The RN had checked his feet for cyanosis, but I found it in his hands. I looked at one eye and a tear was starting to fall from it. For some peculiar reason I hesitated – do I ask for more meds? He was otherwise quiet and didn’t appear in pain. When the other eye began to tear I pushed the buzzer and asked for morphine. It was 10:45 p.m., I looked at dad’s ribs sticking out, his organs were so small and there appeared to be nothing left of him.

At 11:00 I did mouth care for him, just as Diana had done. I made a mess and got Vaseline on his beard, but didn’t worry about it. I knew he would forgive me.

as death approaches

The DOC explained the symptoms of approaching death; sleepiness, confusion, decreased appetite, decreased urine output, lack of response to calling their name. His breathing vacillated from regular breathing to irregular. With cranial involvement we can expect apnea. She explained Cheynes-Stokes respiration. This is the gradual increasingly quick intake of breath, followed by an episode of apnea, stopping breathing, for 15 – 45 seconds. As the body shuts down, it stops sending oxygen to the extremities. She said to look for cyanosis, which is the discolouration of the skin due to deoxygenated hemoglobin in blood vessels. Sometimes the organs shut down or the body sends oxygen to organs rather than the extremities. There is mottling in the hands or feet. Once this occurs, death is imminent - within 72 hours.
A web site entitled, “As Death Approaches” says: “The fear of the unknown is always greater than the fear of the known” and that is true. It was comforting to know what to expect, not that all of this has to occur. She reminded me to look after myself, to take regular breaks. She said to talk to him and let him know I was there. She felt for his heartbeat, which was weakening. She showed me how to do mouth care and told me that the mouth care he had received so far was excellent. Staff came in and helped them check his position. Dad was moaning and he was twitching. He could have been having more seizures. His forehead, where the tumour was growing, was a brighter red than elsewhere.
Brian arrived to spell me off and I went home for a break. He phoned on his cell phone every few hours, while I supervised the roofers and chatted with them. At 5:00 the clouds began rolling in and we were having snow squalls. I told Brian to come home. I had put a phone call into my brother and was waiting to tell him what was going on.
I made it back to the hospital for 5:30 p.m. after picking up a Sub sandwich and a couple of juices and potato chips – to hell with the weight management. At 5:50 the doctor arrived, he decided to pop in and see if I needed anything. The RN, came in at 6:50 and every hour until she left. She checked him and asked if I thought he needed more morphine. In hindsight, I wish I had given him some. I didn’t see evidence that he was in pain, but felt that he had no way of letting me know. He was still blinking; his forehead and hands were red. He was breathing 5 times every ten seconds. I don’t know why I measured it. It was good to have something to do, other than the mouth care.
I rearranged the big easy chair twice, eventually pulling it out and putting the comforter and three pillows on top. It was comfortable. The oxygen tank pulsed all night. That in and out was a form of white noise that canceled out all the noises in the hall, people, and pages for various staff members, residents wandering the halls. I had brought my computer with family photos on it and was sorting the photos, traveling down memory lane and remembering all of the wonderful things dad was and had been for me and for many others: father, husband and volunteer. At 8:00 p.m., he was breathing six breaths every ten seconds. By ten p.m. I had inhaled my food, had one of my juices and watched four CSIs in a row! It was bizarre and most surreal sitting there checking him every so often. It was comforting watch the TV and removing myself from the situation from time to time. It was a breather of sorts.
I went closer to dad, for the umpteenth time looking for signs. The RN had checked his feet for cyanosis, but I found it in his hands. I looked at one eye and a tear was starting to fall from it. For some peculiar reason I hesitated – do I ask for more meds? He was otherwise quiet and didn’t appear in pain. When the other eye began to tear I pushed the buzzer and asked for morphine. It was 10:45 p.m., I looked at dad’s ribs sticking out, his organs were so small and there appeared to be nothing left of him.
At 11:00 I did mouth care for him, just as Diana had done. I made a mess and got Vaseline on his beard, but didn’t worry about it. I knew he would forgive me.

Tuesday, February 13, 2007

PSW care


Brian, after his massage therapy, went in to see dad. He had refused to take his pills today and he was loud, yelling and in pain. Brian went to see the nurse. Dad had refused his Ativan and his other pills. They talked him into taking his Percoset, which lessens his pain, and after some time it will kick in. What do we do if he refuses to take the pain pills? Sure enough he has refused them, as he has so often done with pills when I am there. It must happen once a day.

The CCS research has told me that one result of the brain tumour is intercranial pressure (ICP). These are the symptoms of this. I know that dad has shown these symptoms over the course of the past eleven months, since his tumour was rediagnosed.

1. headache – often occurring early in the morning and made worse by coughing, bending or straining
2. nausea
3. vomiting
4. dizziness
5. vision problems
6. difficulty speaking
7. confusion
8. restlessness
9. drowsiness and decreased consciousness
10. trouble with coordination
11. loss of muscle strength
12. loss of the ability to move a body part (paralysis)
13. seizure
14. coma

I went in to see dad before choir practice in Orillia. A PSW had just changed dad’s sheets. I had seen her from the parking lot as I looked up at dad’s window. His Valentine decorations were a bright spot in an otherwise bland institutional building. Snow has piled up and was quite a chill in the minus 15-degree brisk winter air. Once I made it up to his room I found him in his chair, with his head lolling over to one side. I mentally kicked myself since I had washed his Obus form cover and had forgotten it at home. I had forgotten to send Brian in with it, too. It would have helped him greatly. He won’t lean back and put his head on the headrest. Occasionally his head would shake with tremours. It pained me to look at him.

He was trying to form words but could not speak clearly. He spoke as if he had marbles in his mouth. I thought I heard, “Yie down.” meaning he wanted to lie down. He spoke this phrase several times, too ill to gesture any more. He just cannot relax. I heard him say aaggghh. I knew that there were two staff members on breaks after the meal they had just served at five. I could hear staff calling for help with ‘lifts’, putting residents into bed. I decided to sit and wait until staff came, as I knew they would eventually.

The PSW came into the room. The PSW mentioned that she had just changed his bed, as it was quite messy and smelly with bowel movements. I thanked her for doing so and showing such concern. We spoke of his ear problem. There were crusted bits in it. I told her he had big wax problems and she thought that he had an ear infection. I told her that I though he was in more pain than the medications could help.

When they began to change his adult diaper there was a big problem. Nursing staff had given him a laxative, since he had been constipated. He hadn’t eaten anything in ages, but I am just the daughter. The ladies began to lift him; he groaned as they did so. He could be having any number of symptoms, but I am sure he was in pain. He had been nauseous for months. I could see the bones in his back sticking out. He was as gaunt as a holocaust survivor. He had pressure sores from his bones digging through his thin buttock skin into where he sat on the cushioned wheelchair. They wiped and washed and changed him several times, as he was still evacuating his bowels. The kept their sense of humour and smiled. He grunted and moaned. I know the man is in pain. I do not know how to convince them to give him something different. I am so frustrated with the RNs.

Note to staff

I put a note on dad’s light.

Dear staff,
Dad is in Palliative Care. He is to be kept as comfortable as possible.
Please do not move him unnecessarily. If he does not want to eat, please leave him alone. Getting him in and out of bed agitates him, as well as causing him pain. If you do get him up for a meal, please get him back to bed ASAP.

I have brought in some pillows as the head of his bed should be elevated. He has always had back problems and we bought a support for under his knees, as well as an Obus form for his neck.

When he sits in his chair he cannot support his head. Plese put the Obus form around his neck after a meal.

He has pressure sores which make sitting difficult.

His symptoms include:

Intercranial Pressure – which result in headaches, dizziness, nausea, difficulty speaking, restlessness, confusion.
He cannot hear, he has lost both his hearing aids and his glasses.

Aside from the brain tumour that is growing and sucking nourishment from brain cells, he has severe arthritis in his knees and edema in his feet. The pain from these two physical issues alone have been terrible.

His pain is increasing and there is no reason not to expect it to continue to get worse.

Sunday, February 11, 2007

Brain Tumour Symptoms


Intracranial Pressure: Symptoms
The CCS research had told me that one result of the brain tumour was intercranial pressure (ICP). These were the symptoms of this. I know that dad had shown these symptoms over the course of the past eleven months, since his tumour was rediagnosed.
1. Headache – often occurring early in the morning and made worse by coughing, bending or straining
2. Nausea
3. Vomiting
4. Dizziness
5. Vision problems
6. Difficulty speaking
7. Confusion
8. Restlessness
9. Drowsiness and decreased consciousness
10. Trouble with coordination
11. Loss of muscle strength
12. Loss of the ability to move a body part (paralysis)
13. Seizure
14. Coma

See this page, also.

Wednesday, February 7, 2007

What to expect?

--February 7, 2007 Sample chapter

Dad was not putting sentences together very well--he could draw up many nonsensical words. He was napping every few minutes. He had some of his lunch still in his mouth. He was gesturing towards the bed and I knew he wanted to sleep. We pushed the call button and Cynthia came to our aid. She told us she would get Sharon to come and put Dad into bed. Sharon had a lovely sense of nonsense! Dad always smiled when he saw her. She is an attractive woman, perhaps in her thirties or forties, with dark hair and a winning smile. She always made a point of bending over, or kneeling down, and getting at his eye level. She told him she was going to get him into bed. I loved it when they treated him like a person and someone who might be sentient, even though all indicators pointed to the other end of the spectrum.

They brought in the big mechanical lift. This was a piece of equipment abhttp://lh4.ggpht.com/_yHrosClVZJo/SYTG_lgRrCI/AAAAAAAACTo/kCnRKoYvUTk/s576/68.jpgout five feet high that was plugged in to charge its batteries when not being used. On wheels, it could be rolled and moved around the room easily. Sharon made Dad lean forward. They put the jacket around his shoulders and up under his legs. She told me that he really did not like it. She apologized to him, even though he couldn’t hear her, for having to use the lift. It was a touching gesture and I think it helped. It certainly helped me. I remember one time that he enjoyed it and was laughing and smiling at me as he was being lifted. Once he was in bed, he was asleep in thirty seconds. We tucked him in. I kissed him goodbye and left.

I adored Sharon’s bedside manner. She was always respectful, kind, and caring at a level that went beyond her training. Her spirit embodied that of the PSW: she treated Dad with such dignity and respect at all times. Despite his inability to hear her, she always explained what she was doing. Jill Bolte Taylor, in her book My Stroke of Insight, demonstrated the respect, or lack thereof, that some staff members or visitors display to those who are perceived to be ill. Dr. Bolte Taylor suffered a life-threatening blood clot in her brain and wrote of her experiences. Since she had moments of clarity, with little brain function on the left side of her brain, she was able to understand emotions and feelings without having the language to articulate them at the time. She reminds caregivers and staff members that the best way to help those who are ill is to let them sleep. Beyond that, a caregiver’s respectful attitude is perceived on a deeper psychosocial level even by those with brain injuries and apparent dementia. She found that those who came in to visit her, if they possessed a positive attitude, and brought energy and a strong spirit into her room, gave her added energy. So many burned-out workers in LTC are hard-pressed to keep their energy up. So many of our RNs and RPNs are stressed-out beyond their abilities to cope. This has a profound effect on those in care. Read more about this on my other blog post: PSWs in Ontario.

Another issue that bothers me is that most staff members called my father by his Christian name. People of his generation, potentially four times the age of their caregivers, are being spoken to quite casually, as one would to a peer or acquaintance. I found this most disheartening. A generational thing, I would prefer more formality.

This new level of Dad’s illness created in me a visceral reaction that still haunts me. I kept fighting the reaction. It affected my whole being: body, spirit, and soul. It was very upsetting, and I kept thinking that I would be getting better soon. I would learn to manage my grief for my late mother, as well as grieving the loss of my father as I knew him. Each stage had an effect upon me. I took my emotions out and examined them like the clothes I was planning on wearing to our Valentine Ball on the weekend. I kept weighing my choices: I had two long dresses, more cocktail dresses than ball gowns, a new tulip skirt with a blouse I had bought. I spent some time trying them on, looking at myself this way and that. It was the same with my grief. I went back over events and put them up on a hanger to look at them from all angles. Eventually, I would pick the clothes that fit best. I would come to terms with all I had been through.

I dreaded the next levels from here in Dad’s care. I could not find out any information on what to expect. From a Web site I found out what I could expect in the last forty-eight hours. Eventually, it said, cancer patients succumb to a brain hemorrhage as the cancer cells fight for oxygen and destroy the brain cells. I figured that there would be pain, as there was for my mother during the last years of her life. I remembered going in every morning and after school, checking to see if she was still breathing. When I went in to see Dad, he was very still.
~~~~~~~~

Jill Bolte Taylor's stroke of insight | Video on TED.com

19 min - 10 Dec 2008
On the morning of the stroke, I woke up to a pounding pain behind my left eye. .... what a stroke of insight this could be, to how we live our lives. ...
www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

Tuesday, February 6, 2007

pain begins in earnest

This was the first time that I clearly understood that my father has pain. I know his arthritic knees have been bad but this exceeded anything that has gone before. I sat down on his bed and drew his wheelchair over to be closer to me. His hands were freezing cold and his sweatshirt hood was up. He looked like a wannabe street kid. Very thin and his eyes hollow. I covered him with his wool blanket. I put up a few more Valentine decorations. The sun shone through the red heart-shaped lights. He had moved his chair across the foot of the bed but it was stuck at this point. I was putting up hearts, a large stuffed fuzzy red rose and rearranging the window. I had bought a soft, heart-shaped red pillow from the grocery store, of all places. I put it in his lap. He did not seem to understand what it was. I hung it on a hook, meant for a wreath, that I had hung over the door. It had held his Christmas wreath. It was a bright red spot in his room. It cheered me and I have been told that it cheered others. It shows that someone cares.

He proceeded to leave the room as I was trying to visit with him and I was perched on his bed. I lowered the bed, since it was raised to get him in and out of the chair lift. I kept asking him where he was going. I wasn’t sure if he thought that he had to go down to dinner, since I was there and I always fed him dinner. He kept going out the door. A respite worker was walking by. He said, “Hi. How are you?” She spoke to him for a few seconds. I laughingly told her I was trying to visit and he had left me alone in the room! I left him there while I finished up his window. When I brought him back in he was becoming more agitated. He seemed sedated, but in pain. I held his hand under the blanket. He kept pushing up with his right arm – as if trying to escape some pain. I asked him many times and many ways if he was in pain.

“Are you in pain.?” Pausing for a response. “Does it hurt?”

I clearly enunciated each consonant and he kept asking me, “Pardon?”, turning his bad ear towards me. I wondered at this!

“Do you want a pill for pain?”

“A pie for pay?”

If I weren’t so upset and worrying what to do it would have been funny. There is no way he can understand. Eventually, however, it became abundantly clear. He kept saying, “Ow! Ow!” paired with a sucking in of breath through clenched teeth. This time I went to find the nurse. There are several levels of nursing care. There are nurse who give out the medications. There is a Charge Nurse who is above her and is “in charge”.

I found the floor nurse and spoke to Heather. She obligingly came down to dad’s room. One of the ones with a wonderful bedside manner, she must have spent fifteen minutes with us. She went through, feeling his abdomen to see if he had any reaction and, therefore, pain in that region. He did not wince at all and so she kept at it. I pointed out the huge concave places in his temple, lovingly smoothing it with the back of my hand and he winced. She kept asking him if he had pain, hurt, an ow but he couldn’t hear the words. We ran out of synonyms. She felt his head: the top, the sides, the back. We thought he might be having headaches since there was no indication of pain elsewhere.

At the very least he needed something. It was an hour before the next meds were to handed out. At this point he was getting clorazepam (Ativan) to reduce the agitation, as well as the pills to prevent seizures (Dilantin). The clorazepan had calmed him down enough, but it wasn’t a pain medication, as I had previously thought. She went down and got his regular meds and crusheddad them and mixed them with applesauce. These days it was hit or miss whether he chose to take them. I was worried. She smiled at him and tried to coerce him into taking them. Eventually, as I stood behind him with baited breath, he took them. I thought that sometimes he refused to take them if he knew I was watching. It was hard to say.

It was time to change his meds. She told me that we would have to get a doctor’s orders to up the medications for pain. She asked if I had talked to him at all. I told her I had seen the doctor doing rounds the previous Friday but we hadn’t really spoken, She asked if we had had dada case conference and I told we had, but the doctor was not there since it was the day of the accreditation meeting. I asked how I would be able to talk to the doctor to ask for a pain prescription. She willingly wrote a letter, to be delivered when the doctor came in again. Although he wasn’t scheduled to do the second floor for a few days, he was coming in to do rounds on another floor.

All the way home, driving through the snow covered forests, I worried about what to do. When I made it home, obviously agitated, I looked up the doctor’s office number and phoned. The office was closed, to reopen later that evening for a walk-in clinic. I knew, from the Family Council meeting, that the charge nurse was the person I could speak to and I phoned the front desk. Jackie said she could put me through and I talked to Barb, the charge nurse. She said there was no problem in phoning the doctor. She would phone me back with a report later. Sure enough, after a few minutes she phoned back. The doctor’s office was closed but she had left a message at his home to call her. Barb said she would let me know what happened later. Eventually she phoned me back again and reported that the doctor had given order for Percoset, which would help dad with pain. Percoset, which I looked up in my pill book, is acetaminophen with codeine – prescribed for mild to moderate pain. I hoped it worked. I decided I would go in early the next day to see if it was working.

Saturday, February 3, 2007

Caregiver Stress

I woke to a beautiful day. The wind was blowing long strands of clouds across the horizon. The sun was just peeking up and had painted the bare spots a golden glowing orange. Once the sun rose fully I could see that the over night storm had sprinkled icing sugar snow on top of all of the branches. The wind picked up and sent swirls of snow flying away from the trees. Little whirlwinds of this icing sugar flew across the lake as the winds pushed the snow away. It was as if a giant was lying down on the frozen ice and trying to clean off the snow-covered lake.

We took a walkabout and laughed as we tried to fight the double digit minus temperatures, and the wind as it blew us about. The trees rained snow as the wind kept up. Soon, the snowmobiles came out to go back and forth over the frozen lake. I hope it is frozen, as we lost a couple of men in the water last week! They were traveling to a job site across the water. It is a good thing they weren’t tourists as that is bad for industry around here!

We took a break from dad today. I went into town and spoke to Carol, whose mother has been incredibly ill for seven years. Carol has such an incredible wise woman spirit. I love visiting her and her shop. She told me that she often wrote a journal during busy times and her mother’s hospitalizations. It is a great way to keep track of the progress of a disease. Often one cannot remember what a doctor says. Times are busy and the brain gets over loaded with too much information. She wishes us well and that positive energy I take with me. I do not think that many people realize how much they contribute to the great energy and spirit they contribute that helps me through the day.


Stress is a difficult thing for caregivers. It is important to take breaks. There are agencies that provide both respite care and relief. Most caregivers are women and often have other family responsibilities. I have published an research paper on this. Created when I was doing my M.A. in counselling, a group assignment.

Friday, February 2, 2007

Signs of approaching death


The Canadian Cancer Society (CCS) is going to provide me with a volunteer who has gone through a situation similar to mine. They sent me some information on what to expect at the end of dad’s life. So much on the web talks about care after treatment and does not provide details that will help me in predicting the end. I could tell that my mother was dying, although no one dare say it. She denied it until the end. There are many symptoms related to treatment: speech difficulties, communication disorders, seizures, lethargy, depression to name but a few. I wanted to face reality but I had to respect my mother’s right to denial.

The signs of death are common to many illnesses: lack of appetite, lethargy, increase in time sleeping, apnea, insomnia, and his oncologist suggested that when he was sleeping 50% of the time he might have a month left.

I read something in a handout from the Canadian Cancer Society Information Service that in the case of a brain tumour one should raise the head of the bed of the patient to prevent some symptoms. I wonder how I can get that message across to all the caregivers that serve my dad and meet his needs. They publish numerous materials and dad had a handbook that I do not think anyone read. It gives great details on the brain and brain functioning. We do little for those assisting in palliative care. We rely on not-for-profit Transfer Payment Agencies to meet the needs of such clients and families.