Tuesday, December 12, 2006

Christmas Letter to family

Dear friends of the family,

 I wanted to keep up mom’s tradition of doing a family newsletter, primarily because many of you want to know about my dad’s condition.

Firstly, dad is hanging in there. His tumour has returned, which is typical of a brain tumour. He had four weeks of radiation around the time mom was home in palliative care. Robin was masterful is getting dad to Toronto into the Cancer Lodge. Dad had a great time there, despite the reason for his visit. He visited with residents and returned to the sociable man we remembered.

His arthritic knees prevented him from doing much here in Bala. In May we helped him move into Gravenhurst Manor. During our first visit a lovely young lady, who knew him from Bala United Church, made a point of coming over and speaking to him. Dolly, his neighbour in the Manor, made a point of looking after him. The staff continually went out of their way. After a time, we went back to the doctor’s office where they told us that the tumour had returned. He understood this at the time and we came home to do just that. The tumour is growing in the area of language and cognitive processing. He deteriorates slowly every day.

Brian and I have been trying to be dad’s advocate. After dad could no longer manage at the Manor, we moved him into Leisureworld in Gravenhurst. His physical and mental abilities have continued to deteriorate. We are keeping in close touch with his charge nurse, who is, as mom would say, a pet. Brian went in every morning during most of September and October to feed dad breakfast. This made it easier on staff. Brian burned out and I took leave from work and went in daily to give dad his dinner. In December dad began to eat much less. Due to what we thought was pain we have been giving him more Tylenol. His knees, of course, have continued to give him pain.

On the positive side, my adult children have managed to visit him some. He recognized them, but has ceased to recognize friends. We, nevertheless, thank all those who have visited him. For this moral support we are grateful. Bala United Church friends continue to visit dad. He has a lovely pot of poinsettia.

I have decorated his room for Christmas, which is what mom would have wanted! We continue to visit. Brain shared a chocolate bar with dad on December 5th. Brian’s disc has slipped, from lifting dad from wheelchair to bed, but he goes into Gravenhurst on a regular basis. We visit a woman, Michele, across the hall from dad and have made a new friend there.

Caitlin and Jean-Luc have finished renovating their basement. Jess has a job at Shaw Festival next year, Terry is working hard on year 4 at Carleton and just earned a bursary.

I am retiring this month as work became very difficult whilst looking after dad. We have renovated dad’s house, to better suit us. Otherwise, we are managing. Missing mom.

Friday, November 17, 2006

Refusing to eat -

Dad is asleep. He has his new pants on and his slippers. There is a company that produces great clothes for the aged and infirm. They have snaps in the back and back closings. I bought him a pair of slippers that will fit his swollen feet, with Velcro and flaps on the side. They are very easy to slip on. His hot water bottle has disappeared. He woke and Heather helped me put some clothes on him. He went back to sleep.

I wheeled him down to the Muskoka Room. I tried to wake him two times but there is an imperceptible shake of the head “No!” to food. I tell him I’d leave, but first I cut up his meat for him. He will not wake up much. Just dozes with his head on his chest. I moved his chair backwards. He keeps his head forward. When I brought dinner he slightly shakes his head no. He does not want any. It is a nice cheese-stuffed veal. I decide to cut it up for him and leave. I am so drained. I leave to talk to Mirabelle. When I came back, after saying good-bye to Mirabelle, there is a cute, auburn-haired PSW feeding him. She speaks to me through the glass and says he just started eating. I tell her that he is angry with me for putting him in this place. He ate some of his dinner as she gives him some attention. Good for her.

Friday, November 10, 2006

Brain tumour is taking over

Off I go and trundle Dad down to his dinner room. His brain tumour is growing on the left side of his brain, the scar from the staples still evident three years later. Dad is slipped over on his right side. I cannot feed him in this position. I ask a support worker to help me prop him up, now that I know how to do it with another person. When she walks into the room with me Dad seemed to say, “Bitch.” but I am not sure! I keep carrying on.
I put on the radio but cannot get a clear station. This room is used for crafts and visits from family and friends. I could have had the radio on all these months. Often the residents are in front of the TV just before dinner and I cannot choose a channel that I would prefer to news. As staff slowly wheel residents into the dining room, I often pop in this anteroom to change channels, if Dad doesn’t miss me. He gets upset when I disappear.
It is veal for dinner. It looks like meat and so I hope Dad will eat it. I brought him an orange, as there is never any fresh fruit around at dinnertime. I am trying to cut back on protein myself and think that sharing an orange will be good for us. When he saw it he says, “That’d be nice!” Dad munched a bit and says, “Did you wave to her?”
I reassure him, “Yes!” although I am not sure about his meaning.
“Did they say anything about half -past?” He is in a world of his own. One just must respect that. He refused the veal, although it is breaded and stuffed and seemed quite nice. I tried a piece, thinking it will incite him to eat. No dice. “Sorry about that.” he says.

Saturday, October 28, 2006

Beard trimming 101: THe big event

Brian popped in this morning to visit Dad. We both thought he needed a beard trim. Dad didn’t like anyone touching him anymore. Brian had a wicked cordless electric beard trimmer with an attachment that gathered up the clippings. He took it in to work on Dad, but the batteries died. I needed to give it a go. I was not used to this trimmer, but I did have a hair trimmer I had used on my children’s hair. How hard could this be?
I popped in early to do our evening dinner ritual and routine, trimmer in hand. Dad spoke as if there were marbles in his mouth. I was looking at his beard. “I think we need to trim it! “
“I don’t know. Pieces, suspended on the--”
“Yeah. Brian did his beard this morning. “
“I had three oh packages of it.” He sounded drugged, which was okay. I still suspected that he was in pain, hence his vocalizations. I was not sure.
I could hear Marjorie across the hall, yelling “Help!” as she did continually, in her state of dementia. “Help me! Help me!” Sometimes she would sing the words.
Dad was lying in his bed. Dad seemed calm as I cleaned him up and prepared to trim his beard.
“Do you have any bacon?”
“Yup,” I say, knowing he means scissors. His inability to retrieve nouns did not faze me anymore. I did not correct him. “I’ll get a towel.”
“You want to know. Not what you left. A get back to get up.”
I sat him up, cranking the head of the bed. He gave a big yawn.
“I did not have any relax.”
“Oh, no?”
I started trimming. It was quite long, with his mustache growing into his mouth. I was tickling him, and he moved away. “It’s okay. Sorry, I’m tickling. I’m doing my best, but not giving up my day job, though.” (Oops. Actually, I had.)
I kept working at the beard project and I was relatively successful. It was a bit crooked, but better than it had been. He tended to get so much food into his beard and mustache that it helped if we kept it short. He had always been so meticulous with his appearance. He and Mom had made regular visits to the hairdresser. Dad always got dressed every day in a shirt and pants.
As I worked at his beard, the PSWs came in and asked if I wanted them to get him up. I told them that he would be ready shortly. Off we went to dinner again.

Sunday, October 22, 2006

Choking & Swallowing

Dad greets me with a kiss today. Three times he tipped over in his chair. I think his equilibrium is gone. He juggled right-of-way with another resident, Tom, in the doorway as he tried to leave the sitting room. They are crashing about with wheel chairs, running into one another. He became angry, “I can never do anything well, dammit.” How do I recall for him the home repairs he had done, the work he did over the years, the care and love and the attention he lavished on his family?

He chokes on his milk and he cannot swallow properly. He recites “555”, the first three digits of his home phone number. I leave to get his third cup of milk and when I return he is surprised that I am here. He says, “Oh. Look who’s here!” As if I hadn’t just fed him two cups of milk. He insists on spearing his own meat that day. He manages to get three pieces into himself. He had much trouble doing it. “Shit. Nothing’s worth a shit.” as he misses the small piece I had cut for him. He drank four glasses of milk that day. He is quite thirsty but I fear that he will choke to death and the newspaper will say, “Daughter stands by while father chokes to death on milk”.

Swallowing difficulties are called dysphagia and they are a common result of neurological or neuromuscular damage. At the time I had no idea that it is something to be expected. Large percentages of people with strokes, Parkinson’s disease, MS have this symptom. Those with structural damage include people like my Dad who have tumours. Swallowing is a complex process that involves 26 muscles. It is uncomfortable and frightening, as well as life-threatening because dysphagia interferes with the oral intake of food and medications. Long-Term Care Best Practices says that up to 70% of residents on LTC have signs of swallowing problems. This can result in aspirations, choking, suffocation, dehydration, malnutrition and decreased quality of life.

Dysphagia – choking and swallowing issues

The Regional Geriatric Program publishes an e-zine called BP Blogger. One issue deals with swallowing. The web site has a lot of information.

Signs of Swallowing Difficulties
• Coughing when eating or drinking
• Food or liquid spilling from the lips when eating or drinking
• Trouble moving food or liquid around in the mouth
• Prolonged chewing
• Trouble starting to swallow once food of liquid is in the mouth
• Clearing throat shortly after a meal
• Has a wet or gurgly sounding voice
• Complains feeling that something is “stuck” after swallowing
• Shortness of breath during or right after mealtime
• Has frequent heartburn or bitter taste in the mouth
• Unexplained weight loss
• Recurrent chest infections
• Refusal to eat or reluctance to have food in the mouth
• Pocketing food or liquid in the cheeks or holding food in mouth
(Reprinted with permission)

Sunday, October 15, 2006

Case Conference for Dad

The law states that there must be annual case conferences for residents in Long-Term Care (LTC). Today is the day. Aside from the intake meeting, we keep careful tabs on my father. There is little we do not know. We find that popping in at different times of the day has keeps us apprised of different issues and situations. We have met various staff members who work on the different shifts. Aside from coming in every day to feed Dad dinner, we pop in if we are in town for an appointment or an errand. I have come to know the reception staff. They are very kind. We share stories of parental issues. One woman has dealt with these very issues with which we now deal. Her mother would refuse food in her presence and eat later. Her mother agitated when she is there visiting - perhaps blaming the daughter for the frailties of old age and the insult of leaving familiar surroundings.

Today there is an accreditation meeting for the nursing home. Our case conference conflicts with this event. Dad’s doctor, who is responsible for the entire floor of patients, sees us in the hall outside the nursing station and apologizes that he cannot make the meeting. We went upstairs to see Dad before the meeting. He sees us and says, “What are you doing here this early?” It is 10:20, just before our 10:30 meeting. He must have some remaining sense of time and that we visit at dinner time on most days. He cannot really understand what I am saying – that we have a meeting, maybe. He is talking gibberish.

The case conference is in our familiar Muskoka Room. I have taken Dad down the hall to where our meeting will occur. As a teacher I always included students in our parent-teacher meetings. I think it an important thing to do. It is a small conference with the charge nurse, and another staff member, a PSW unfamiliar with dad’s case, and us. They tell me Dad has been aggressive with a caregiver. He was agitated and grabbed her arm. They tell me he is refusing a bath. He did this for two weeks at the Manor in the summer. This is not my father. As we talk Dad wheels his chair around the large, heavy pine table. He gets caught up on the table leg. He is talking out loud. “What do we deliver to?” And later, “Where can I go to a radio activity team?” I sit and write these things down as we talk. It gives me a focus and a purpose. I find it surreal, these interactions. I bought a spiral bound book to record all the information.
The PSW suggests that we get Dad involved in some activities. He cannot hear. He refuses to interact when he is embarrassed. They suggest music therapy. Dad loves music so very much. If he can only hear that might be a good bet. I ask if they can arrange to have the resident hairdresser cut his beard weekly. It grows so quickly. His hair, on the other hand, what is left of it, is straggly from the radiation treatments in the spring. It is very fine and wispy. They tell me about the massage therapist, as well. I knew she existed. I had previously contacted her and ask that she try a visit once a week. It might help his circulation and improve his well-being. I have questions about dad’s medications, but since the doctor cannot attend the meeting I will have to try and talk to him later. This proved the most difficult challenge of all: trying to talk with the busy doctor, especially at the most crucial times. He is only in the residence once a week.

Eventually, I learn that the best person to talk to is the Charge Nurse when I visit at mealtimes. She knows more of his behaviour and can speak to the doctor on our behalf. We have full power of attorney, both medical and personal, as is the case with about 90 % of the residents in this wing. I began to suspect that Dad is in pain, but cannot be sure. I had to figure out what to do with this information. They can give him Tylenol 3, but, since he has had arthritis pain in his knees for years, I think it will not have much of an effect on him.

Monday, October 9, 2006

Thanksgiving Dinner

Today I went in to visit dad. As always, the building is beautifully decorated. There are many Thanksgiving symbols and decorations. As I approach the front walkway I see huge bales of straw, with stuffed Wizard of Oz people made of hay, pumpkins, and bright orange ribbons. The activity staff put up cute little turkeys, too. Indoors, the floral arrangements are in tune with the theme and fall colours. It is cheery and a recognition of the changing of the seasons. I must dig out some decorations for Dad’s room.

The kitchen staff prepared a wonderful dinner. Brian doesn’t like turkey and so I am quite envious of dad’s full dinner; turkey, stuffing, hot vegetable and pumpkin pie. We will not eat so well, as there are only the two of us. We are drained with the demands of regularly feeding dad. I have found it much easier to visit Dad and feed him at dinnertime, rather trying to drum up conversation. I have the need to cry when I visit, but I can fight it if I concentrate on meeting Dad’s dietary needs. It means that Brian and I often go out to dinner after this, since I do not get home until dark and too late, with little energy to cook.
I sit there thinking of the numerous turkeys Dad had prepared. His job is to put the turkey in before church. He will quietly go about the kitchen making the stuffing; cooking and saving the giblets for whichever animals he had at the time. The cats loved them.
One of the photos I displayed for Mom’s Memorial Service visitation is one that shows them two years ago, aprons tied, Mom at the sink, Dad at the stove. He wore a bright pink vest over his dress shirt. Mom wore a white, embroidered sweater. Both dressed in black dress pants. They always take pride in their appearance. They hated it when people popped in, especially when they become so ill. Mom spent all day in her pajamas, as the tumours are painful and her colitis horrible, with emergency visits to the bathroom on an irregular and unpredictable basis.

Dad is calmer today, Monday, than he was on Sunday. He can’t figure out the hearing aid. He keeps turning up the volume, making it squeak. He reads lips a lot. He loves the ladies: cheering up every time a young caregiver pops in. He smiles and turns on the charm. He seemed to accept being fed as a gesture. It is only fitting that the person that nurtured and fed me should be, in turn, be receiving such care. I cry on the drive home, for moments lost to memory, never to be repeated. A childhood remembered with great joy. The photo shows them making the last Thanksgiving dinner they ever made. I will become an orphan. I am now the matriarch. How different it all feels.

Monday, October 2, 2006


Brian arrives before 8:00 a.m., in time for breakfast. Dad ate a double ration of breakfast. All seems much better. Perhaps, as the Charge Nurse says, he needs to become acclimatized to his new surroundings. When I arrive at 3:30 in the afternoon he is sleeping. I walk into the room and he is quiet and peaceful. He is now incontinent. Depending upon others to clean him up and change his adult diapers, bedclothes and clothing. When he awoke we tried to communicate. He tells me, “You don’t have to do laundry.” As always, I just nod and smile. There is a time, before Mom and Dad deigned to purchase hearing aids, that Mom will nod and smile to everything I would say. She really did not hear what I said, but does not want to admit that she could not hear us. What a weird turn of events.

Thursday, September 28, 2006

Selective Hearing

When Brian arrives for dad’s breakfast Dad is trying to get out of bed. Brian tells him to wait for a nurse and that settles him down. They do the two-person lift and put Dad in his chair. While he waits Brian tidies the room. He knows how much Dad likes things neat, having helped him tidy up his room at the Manor. Dad is ranting about the mess in his very small, simple hospital-like room. Dad has two dressers, one wardrobe; his TV sits atop one dresser. We placed three paintings and photographs around the room. I have bought a plant, with a big yellow bow for the bright window. Dad loves his plants and flowers. I know I married my mother, she and Brian joked about the preponderance they had for liking things just so. I am a clutter freak and Brian is a neatnik.

Brian manages to get Dad to eat a bowl of porridge and drink two glasses of orange juice. There are no eggs and Dad is really pissed off with this. He complains to Brian that he is feeding him too fast. Also, Brian changed spoons and that pisses him off, too. This takes me back to looking after my children as toddlers. Things had to be just so. They cannot tolerate any change in routine. They had a routine and a rigid expectation. It makes everyone feel better to know what to expect. It breaks my heart that Dad has to be there. We cannot cope with his intense needs at home. I have talked to so many women who care for ailing family members. The difference seems to be if both spouses are alive – they can cope or stay in denial about it. It puts a huge burden on daughters and neighbours, however.

Dad’s hearing aid is broken. It was lost, and has been found, but it is really broken. Communication is a very tricky proposition these days. We know that Dad has big problems with the small size of his ear canals. We do not know if this is due to his brain tumour, his brain swelling, or exactly what. The end result is the same. We must yell into dad’s ear to make ourselves clear. We do know that he has selective hearing. While he is quite upset with us, when the cute blond nurse comes by and cheerily asks, “Are you ready for your pills?”, he responds with a big smile. He is a wicked flirt! Again, the tumour and the dementia is removing his inhibitions.

Mom and Dad fought against hearing aids many years ago. They spent a long time in denial, and learned to read lips quite well. It is so ironic that I recall Mom fighting with her Mom to get hearing aids, many, many years ago. Hearing aids these days are quite small and make a huge amount of difference. Friends tell me that they have fought the same battle with their ailing parents that their parents fought with their grandparents.

Brian takes the one remaining hearing aid away to the hearing aid store. The young lady, Terri, has been very good about cleaning dad’s hearing aids. She come to mom’s funeral and popped in at the visitation last May. The cleaning cost nearly three hundred dollars. She tells Brian that dad’s hearing is 75% gone in his left ear and 25% gone in his right as of a hearing test two years ago. This explains a lot of our troubles. Dad, in his times of dementia, turns the hearing aids up so loud that they whine and buzz at a very high frequency. It disturbs many people around him.

Wednesday, September 27, 2006


There are two emergencies at the Long Term Care Facility this morning and Dad is late getting up out of bed. Brian reports that he is alert and feeds himself, which is a good thing. I do not know how Brian finds the patience for all of this. He never knew his father. He’s never been a father, although he is a wonderful stepfather. He tells me his arm gets tired and his back hurts from sitting at a difficult angle in order to feed dad. I am so proud of him.

Dad takes three pills at 8:00 a.m., and takes them easily from Hannah, the young, attractive charge nurse. She tells Brian that he ate his hamburger yesterday. Dad and Brian talk about hockey. His noun retrieval is better this morning. Yet, he is telling Brian that there are two dogs that don’t like him. He is talking about a dog named Barbados. Can this mean Bandy? We do not know. He tells Brian that he is “stupid and cannot get the word.” This is what he started saying in previously when he is in The Manor – that he is “stupid”. He has forgotten that the brain tumour is taking his mind. Dad groans a lot when he is moved.

Brian lets him do everything he can, which gives Dad confidence. When Brian puts on dad’s bib Dad is unhappy with that. He put it on his lap, instead. Brian knows Dad is late for breakfast and he put dad’s robe on backwards, in order to get him down for breakfast in time. After lunch Brian washes Dad’s beard. Dad uses Brian’s proper name several times and thanks him for coming in. His hearing is particularly bad today. As we visit we continue to talk to him as if he can hear. It gives some semblance of normality.

Tuesday, September 26, 2006

Physiotherapy & Dieticians

The things my father says truly embarrass me. I know that his inhibitions have been ravaged by the disease and the indignities he has suffered. There are strangers wandering in and out of his room, wiping his mess from either end, changing his clothes, taking him down to meals he would rather refuse. Other residents wander in, too, lost and alone. Their dementia is an unseen issue in their daily lives. Dad speaks in full sentences to Brian, refusing toast and waffles. He speaks of care staff with the cheekiness that only the aged can display. “Here comes the fat one.” Or "Here comes the old one.” He eats his eggs, though.

The physiotherapist has a conversation with Brian, who has taken much of the advocacy burden from me. Brian looks more like Dad than I do (I am adopted!), with beard and baldhead. Katherine wants to give Dad some physiotherapy to help him to more easily transfer from the wheelchair to the bed. Brian says that we need to refuse this help, since making Dad stronger in this activity will only jeopardize his safety. Dad is in palliative care, we have to reassure them, and this is a different situation than most of the other residents. Dad will not get stronger. He will get weaker and requires two people to lift him now. There is no sense in helping keep up his strength to defy the care staff.

Brian has a conversation with the dietician. She has found that Dad seems to like to have an egg a day. Brian feeds him breakfast on a daily basis, and this is what he wants. The dietician is concerned with his cholesterol. Again, we explain that he has been given a final prognosis, the brain tumour is inoperable and untreatable, and we want him to be happy eating whatever he wants to eat. Like a teenager with anorexia he has been asserting his will around the issue of food. It is the last stand for dad. This reminds Brian of his stepfather, who was in a nursing home with Alzheimer’s Syndrome many years ago. They wanted to put him on a diet, as they are worried about his food intake. Again, let us just keep him happy.

At home, alone in the solitude, I began the day by wrestling with Bell telephone. Dad’s phone has been disconnected, he cannot use it properly anymore, and yet he is still getting bills. Dealing with Bell has been incredibly frustrating. The company is too big and no one seems to know what is really going on. The same is true for mail. We get a continual assault of mail directed to Mr. or Mrs. Jilks. It has been my job to weed out the junk mail and the solicitations from the various charities with whom Mom and Dad communicated. “Admail” cannot be returned. These are the bulk mailings that companies send to us all. They are unreturnable, due to the cheap rates for this type of mail. Opening the mail I scrawl, “deceased” on the form begging for donations, and return it to the charity. It is difficult to do on some days.

Sunday, September 24, 2006

The White Board

When Dad was in the Manor we often wrote things down for him, since he could not hear us. It became humorous as he would reread notes previously dealt with and would forget that we had moved on with the conversation. I should have taken the scraps of paper and filed them. We have to scrawl over the old notes so as not to confuse him during our written conversations.

Brian’s brilliant idea is to put a small white board in Dad’s room. This way he can write down what it is he wants to communicate to Dad and Dad can respond orally. I have heard other families use this method. It really works well, since one simply erases the message to write the next one. Unfortunately, Dad is not quite clear on some concepts. After a time he lost enough of his cognitive abilities that it became useless and then he lost the pen. Back to the drawing board and square one.

Wednesday, September 13, 2006


His walker, missing yesterday, has been returned. The PSW tells me that Dad has been up at night. He tore up his room, they tell me. He is wandering down the hall. The charge nurse tells me that they give him some Ativan to calm him down. I think I could use one. I wonder what all these drugs do to him.

Lately, after checking with the dietician, I know now that Dad has only eaten about 25 % - 50 % of two meals in two weeks. They keep careful records and weigh the patients regularly. He is refusing most meals. He is still refusing his bath. It must be scary. A big, new room with strangers lifting him up in the hoist isn’t the easiest of scenarios. He grabbed the arm of one of the attendants in his fit of agitation. They decide to give up the bath notion.

Monday, September 11, 2006

Signs of Pain

I toddle off to school, to spend the day with my wonderful students. They are ready for anything with their whole lives ahead of them. I continue to wrestle my demons as I question my ability to do my job. I drive home with the CD blasting great tunes, sailing past sparkling lakes, turkey vultures as tall as the hood of my car who watch me pass, trees dancing in the wind and the wind messing my hair, only to arrive home to more bad news from Leisureworld via Brian. Today Dad wanders down the hall, still in his wheelchair. He cannot walk on his own and has lost the ability to move around easily. He ends up pulling the fire alarm. I am mortified! At least I know they cannot kick him out of this Long-Term Care home.

I worry about having to restrain him. He is terribly confused and groaning a lot. We do not know if he is in pain or what we can do about it. The staff give him some Tylenol to ease his pain. It might simply be his knees that are agonizing him, but, again, we do not know. He cannot communicate this to us. Brian has been going in every morning after breakfast to feed him. He sends me off to work and then goes in to see dad. Sometimes Brian leaves the house before I do to get Dad up in time for breakfast.

Pain is not a normal part of aging. It is fairly common in Long-Term Care Homes, and ought to be addressed. Chronic pain is pain that persists for 3 to 6 months after it is expected to, after healing from something. Persistent pain is pain that lasts longer than a month. Dad has always had persistent pain, due to the arthritis in his knees, and this has never been adequately addressed. All of us tried many things but did not find relief – or he give up. He bought the magnetic wraps that are supposed to help, but gave those up. In the summer we put some topical ointments on his knees. After the radiation treatments on his forehead he put some of this, accidentally, on his forehead when he isn’t thinking straight. In the past Dad indicated pain, but he is beyond that now.

There are non-specific signs of pain: frowning, grimacing, grinding of teeth, fidgeting, bracing, rubbing, striking out, increasing or recurring agitation, poor eating or sleeping habits, sighing, moaning, groaning, decreasing activity levels, resisting particular movement, change in gait or behaviour or loss of function. Dad had all of these and, in hindsight, was clearly undermedicated.

School and teaching continue to give me stress. My hands continue to shake. I have gained weight. I am constantly fighting with either anger or fear, self doubt and insecurity. My boss has been vigilant in disciplining me for errors and correcting my anticipated bad behaviour. I understand, having been through the principal’s course, that it is up to the school leader to help teachers become the best they can be. I wonder if I am adequate as an educator. I have little self-esteem left. I have headaches and have had insomnia for months. I feel helpless and have no control over my own curriculum. The hand tremours began in May or June. I cannot remember exactly when they started. Things are such a battle with fighting for care for my mother. I need to stay home for a few days.

Thursday, September 7, 2006

Stress Increases

School carries on. What beautiful country it is here. Our class rides on a bus into Parry Sound through hills and valleys, through forests, big rock cuts of pink, grey and white granite. I take the students to the park for their swim tests. My class consists of a wonderful group of grade 8 students. It is rare to find such a congenial group. It is a blessing, since I am stressed beyond belief. My biggest problem remains what NOT to teach, an article I published on my website. There is so much we could do, but we must focus on the assigned curriculum.

As we work through the History textbook I begin to question the purpose of it all. What meaning does this have for these young people? Many cannot read the text. I am faced with students with varying abilities and interests. With huge social, emotional and cognitive needs I wonder if I can do it. I am hard pressed to wonder how to make this work interesting. I used to love what I do. I am well respected in my previous school board and assisted other teacher with their special needs students. I am having a great deal of trouble making decisions and dealing with day book plans, seating plans, the requirements of the principal for special needs students, curriculum plans and the bureaucracy of this work.

When I arrive back at the school, after this beautiful day on the shores of Georgian Bay in Parry Sound, I dismissed the students. My principal has left a note in my mailbox requiring my presence in her office. How peculiar as I examine my feelings around this: being called to the office still, at nearly age 50, gives me butterflies in my stomach! The principal calls me in to talk to me and tells me that she is very upset with my timetable. I had been over it several times and have revised it, even though we cannot stick to it since the camping trip dominated most of our time in the first two weeks of school. Any timetable must be tailored to the particular class, as each classroom is made up of particular characters and must be influenced by learning needs, learning styles and learning abilities. I begin to question my abilities to manage the classroom to her satisfaction. This aside from my fears about my ability to actually create a curriculum that is meaningful and effective for these students.

As the stress increases I realize that I may not be able to cope with teaching. Workplace stress results in 35 million workdays lost each year, according to the Alberta Mental Health Board (AMHB). Mental illness accounts for up to 40 per cent of short-term disability insurance claims and 50 per cent of long-term claims. I know I am not alone in feeling depressed. I know that my situation is out of my control. My pressure at work is causing me more stress than I can imagine. It used to be a safe place where I could escape my worries over my father and deal with an incredible class of young people.

In the publication by the AMHB, they cite a Toronto-based Roundtable on Addiction and Mental Health report. This publication states that employees in the workplace who report a “consistent level of stress” are twice as likely to become depressed. They go on to say that stress in the workplace has been narrowed down to ten key factors: “lack of control over daily tasks, office politics, lack of communication, inconsistent or unreliable performance reviews, work/life conflicts, lack of company leadership or direction, unclear job expectations, random interruptions and unreasonable workloads.” I know I am well up on this checklist. I wonder if I shouldn’t find someone to talk to again. I am worried about going to counselling through the Employee Assistance Program (EAP) again. I let it go.

Wednesday, September 6, 2006

Hearing Aids Cleaned

Day 2 of school and with me having huge responsibilities at school: new school, new community and new curriculum, Brian has taken responsibility for checking in on dad. He cares for my Dad as if he is his own. With much experience in caring for his late mother, as an only child, I am blessed with his knowledge, understanding and physical and emotional support. Brian reports to me from Leisureworld from his daily visits and I write all of it down. Dad’s inability to hear us has become one of the worst of Dad’s issues.

Dad has been so frustrated with his hearing or lack thereof. He had been having his ears cleaned weekly, after much muss and fuss. In the Long Term Care Home, however, this service isn’t available as far as we know. The Manor is taking him by mini-bus to the doctor, who will do this for us. Funding allocations for LTC residences include staff funding of 2.5 to 2.6 hours per resident to get them up and ready and into the dining room for meals, washing them, meeting their needs and giving them snacks. It is barely enough and less than other provinces deem minimal.

For each resident in BC, Alberta, Manitoba and Saskatchewan they have a minimum funding per client of 3 hours per day. Recently, pre-election posturing in August, 2006, included a political announcement of 1200 new nurses in the province and funding announcements that will not be in enacted until 2008, and we won’t see a result until 2009. Funding for housekeeping, laundry and other services are running less than inflation. Wages and utilities have increased by 3 % and inflation is increased by 1.6 %. The 3rd floor, for example, with the flight risk residents and Alzheimer’s patients, absolutely needs 3 hours per resident.
While we met the doctor on his intake day, he only visits weekly and they do not have enough time to see each patient during this visit. The government only provides funding for one physician per floor. This will later prove a difficult obstacle. Right now it isn’t too much of an issue. It is the nursing staff that determines his needs, along with our advice, support and guidance.

Brian takes dad’s hearing aid to have it cleaned at the store. It is a bit of money, but worth it. Dad’s ear is raw with scratching it. Everyone says that they have never seen such wax build up and so small an ear canal. I wonder if Dad can focus on this problem since he cannot face his other issues: grieving over his wife, dog, old life and old home.

Saturday, September 2, 2006


How nice to have our adult kids visit this weekend. Caitlin and Jean-Luc come all the way from Ottawa. Jean-Luc helped with the cooking, which is a relief. Caitlin and I go into Gravenhurst, while Jean-Luc takes care of our supper. J-L also helps me by putting in a shelf in our bathroom. He is such a good man. I am so glad he is Caitlin’s husband. It is fun showing them how we had renovated the house. I have missed them.
The drive into town never ceases to amaze me with its beauty. Three deer are crossing the road ahead of us. They delicately tiptoe across the road, one at a time, checking both ways for threats – just the way I taught Caitlin to watch as she crossed the street. There are lessons in nature. Visitors must sign in to Leisureworld. There is a register for volunteers, outside professional staff and for visitors. Residents are no longer able to check both ways for danger. In fact, some must be watched carefully as their cognitive functioning is impaired. The staff must do it for them.
There is a keypad with a code for entry and exiting from the facility. This protects those who are at risk for flight. It lets staff know, in case of emergency, who is in the building. Caitlin and I went to the desk and I signed our names, the time of our visit, as well as the resident and the floor on which we are visiting. We put on our badges and went upstairs, using the anti-bacterial agent on our hands.
Dad knows Caitlin – he clearly shows recognition and is happy to see her. We get him organized, drop off our coats, and follow our regular dinner routine, wheeling Dad into the Muskoka Room. Caitlin helps me feed him, taking the spoon from me while I leave the room to get the rest of his meal. She helps by holding the cup to his mouth. Dad’s hands shake so much some days that he cannot hold the cup without spilling. Sometimes he can hold it; other times I keep my hand under the cup, or under his hand, as a safeguard. I have to be careful not to interfere too much. This diminishes his self-esteem and makes him angry if I show him that I do not think he can do something that he is capable of on this day.
Dad cannot hear Caitlin, she has a very soft voice, but he knows she is trying to take care of him. He has been angry with me and this is a blessed relief to have support and a young, fresh and familiar face. We are both discussing his gradual decline on the way home. Not as shocking as for some, since she saw him at his worst in May. Home we went for a delicious meal and some family time. To everything there is a season and I am now the matriarch.

Wednesday, August 30, 2006

Time for a Wheelchair

The rules of the Long-Term Care home say that whenever there is a significant incident they must phone the family. I had gotten over the phone calls form Dad. My stomach no longer churned into knots at the ring. It turns out that Dad has fallen again. I had to explain that he has fallen five times in two days in the past while and that it is to be expected. He balance is off and his strength is going. There is little we can do. Unfortunately, he continues to try and get up in the night. He either refuses or does not know to push the call button to get help. He gets out of bed and then falls on the floor. The staff wisely put his bed down as low as it can go and place two mats on the floor. Eventually, he will not be able to raise himself out of the bed. In the meantime, this assuaged all of our concerns.

It is now time for a wheelchair. Brian and I cannot support him enough to help him move about. His balance has disappeared. We must find one somewhere. There are places that rent them, which is what we shall do since we don’t know how much time Dad will be with us. Since he is slumping over so much I worry about him. He seems to lose his balance just sitting and falls over to the side. He has been using the nursing home’s wheelchair but he still has the walker that clutters the room. There is little enough space with the pads they have on the floor. I find it difficult remembering what I need to do for Dad. I make non-mental notes for a frame of reference. I cannot focus much of the time. This is the difficulty balancing home, my husband and adult children, work and Dad’s care.

Monday, August 28, 2006

Dad’s Goes into Long Term Care

Today is the day. We went over to the Manor and packed up his things. I had made the mistake of taking in suitcases on Friday. It disturbed him so much that the Manor staff take them and hid them. Lord knows he is agitated enough. I thought it would help him understand what is happening. I had so carefully prepared him. He had said, several time, that he isn’t getting the kind of care he wanted here in the retirement home. He tell me so many times that it is great in the beginning and now things had gotten worse. He does not understand that he is the one who had gotten so sick that they could not manage his care in a retirement home. We loved having him in the Manor. People are not as ill as in the nursing home and the care is similar to a luxury hotel. Now that he is refusing meals, baths and generally being so demanding on their time, he needs to move.

Leisureworld is a private institution. There is some confusion regarding public or private setting for care. The resident is subsidized a per deum amount, and then, should she or he choose to, they can put that towards a private room. This is essential for Dad. He is loud and is often awake at night. We cannot allow him to disturb someone else.

We managed to get Dad into the car with some difficulty. He is a tall man and, while he had lost weight, he still is a significant size. Brian drove the mini-van with Dad’s chair and luggage. I drove Dad in the car. The foyer is a lovely place. With a couple of couches and chairs, many flowers, donated by local florists, or grieving families, it is always bright and cheery. He cannot manage his walker and we had to find a wheelchair. He can barely lift his profoundly swollen feet and we had difficulties with the footrests. I wheeled him by the front desk, where II had previously completed almost all the paperwork. We passed the central courtyard. Filled with patio furniture, trees, mature plantings, it is quite nice. They had BBQs there in good weather. It is a peaceful place to visit.

Upstairs we went to Dad’s room. It is pretty stark. It is definitely a hospital-like setting. Bare floors, a simple hospital bed, pine-laminated wardrobe and two two-drawer dressers with a few nails in the walls for pictures. I wrote down a list of pictures to bring and hang up. They encourage families to help make the residents more at home. The window overlooks the front parking and courtyard. I will spend many hours gazing out. The curtains are a neutral brown colour, with a window that, thankfully, opened up in good weather or bad weather indoors. The sun shines into the room, making it bright and give more hope than we had a right to look forward to. I wisely do not take as many clothes in for Dad. He will never be outdoors again and never require a winter coat. We leave those things in our rental locker. He is not hopeful, nor optimistic, nor is he particularly pleased with being there. I take him on a brief tour of the dining room. There are two big dining rooms per floor, with an adjoining cafeteria for food preparations.

Today, Monday is the regular day for the doctor’s visit. There is one doctor for this floor. He usually does rounds with the Charge Nurse, visiting, briefly with each resident and noting their needs. The Charge Nurse can phone the doctor at any time and usually has a standing order for meds as required. The Charge Nurse and the doctor need to do an initial assessment of Dad and they ask me to leave Dad’s room. I stood in the hall.

Each resident has a framed plaque screwed to the wall outside beside his or her door. In this enclosure staff put a brief biography of the residents. It humanizes the person, who is often unrecognizable as the person they used to be. I read some of them as I waited for the doctor and nurse to finish. I prepared one, not as succinct as the others. I am usually accused of being to loquacious in my writing practice.

The Leisureworld brochure suggests that families bring in small personal items to make residents feel at home: pictures, family albums, calendars, TV, radio, etc. Many residents take things out of their rooms and lose them and items must be labelled. Some like to wander in other resident’s rooms and borrow items. This is difficult to control.

We declined to stay much longer, even though we are offered a meal. I thought it best he gets used to the routine, the room and the requirements of the institution. We leave him at dinnertime - hoping for the best.

Tuesday, August 15, 2006

Declaring Dad Incapable

The official papers are signed. He is now a candidate for a government bed in a LTC facility. We are wondering if he is suffering from a urinary tract infection again, as he seemed to need to urinate every ten minutes or so. His hearing seemed all right today and he ate his muffin in his room as I watched. His knees and feet are so bad – so swollen.

We had bought him socks to keep the swelling down. It is hard getting them on – but he had two pair he wore only in the day. The staff rinsed them out every day. It seemed to keep the swelling down, but Gay phones Dad’s GP and he prescribed diuretics. They went down a bit in time, but never got back to normal. Getting old sucks. The alternative is worse, however, and we keep on trying to do the best we can.

Saturday, August 12, 2006

1:00 a.m. phone call

When you get a call in the wee hours it is easily either an emergency, or the Manor need to talk to me, or some nutbar. This time it is Dad again. It is bittersweet relief. Brian takes the call for me. The first time Dad grunts “Uh” and hangs up. The second time he manages to say that there is something wrong in the upper or lower part of the house. Fire is a big concern up here. We wonder what is up. But he does not think we can do anything and we convinced him to hang up and go to bed. The third call is something about the burners.

Fortunately, the duty staff take the phone and said there is no problem – no fire – no worries - he just cannot sleep or make the TV work. She tells us he is confused but not afraid. I called the Manor in the morning and they said he’d been up until 2:00 a.m. and then went to bed. He then got up at 7:30 and went down to breakfast.

OF course, Dolly, Dad’s neighbour, does not need Dad watching TV since he had to crank the volume up so loud it sounded like fight night next door to her. Poor woman. It seems as if it is after dinner that the panic starts.

Is this sundowner’s syndrome or a foreshadowing? Many elderly adults miss spouses and they become very sad and agitated in the evening. It seems to be something
By the time we managed to get in to visit with him he tells us, “I don’t even know what to think about.”
“We’re taking care of you Dad. You need not worry.”
“It doesn’t get a good thing on here.”
“It’s the best they can do, Dad.”
“I asked three girls to help me and they wouldn’t do it.”
“ Dad, they don’t know what to do for you.”
“It’s all wrong now anyway.”
“Yes, Dad. It’s the brain tumour coming back.”
“They’re not taking care of me.” These wonderful women who try to help him simply cannot. What he wants is to be back to normal. This will never get better - I begin to understand. “Lord give me strength”, I pray.

He is terribly confused. He keeps telling me how mixed up it is in his head. This started back during the time he had a bladder infection. He just cannot get things straight and know it. This is profoundly difficult on all of us. How much worse will this get?

Friday, August 11, 2006

Choosing LTC facility

It is now time for Dad to be placed into another care center. I spoke to Gay and I spoke to case Community Care Access Centre (CCAC) case manager, Kathleen, who said that we have to put him on a waiting list. She says it is best to get him on a list soon, before it becomes an emergency to get him from a hospital into a nursing home, as he can be placed anywhere up to 150 km away. I do some research.

We look around and have a tour through Leisureworld in Gravenhurst. I do not think that there would be much difference in these government-subsidized institutions and we are pleased with the Gravenhurst location. We have to find a location that suits us, since we know we’d be visiting a lot. I filled in the forms and take power of attorney for him. Dad is no longer able to make decisions. His cognitive functions are quite limited. He cannot even keep track of his pills anymore and telling time is now beyond him. There are a number of forms. His attention and memory are gone, but he isn’t a risk for running away; he simply needs 24 hour nursing care.

There are many booklets explaining what kind of facility this is. I duly read all the information. Brian is incredibly helpful in sorting through it with me. He had place his mother into such care several years ago. I am numb when we visited – seeing all the seriously ill patients. The Alzheimer’s floor was the most difficult. Brian’s stepfather had had this condition and he knows what to expect. Brian asked all the right questions for me. He knows the questions to ask having done this for his mother and stepfather.

When a person’s needs become more severe, or they do not want to remain at home a placement coordinator will help and be actively involved in admitting a client into a Long Term Care Home LTC. There are rules and regulations regarding access to LTC. The process begins with a home visit, if one has not yet occurred through previous access to services, an assessment of the client’s capacity. When a client can no longer secure adequate care at home, there is a decision to place the client and navigate them through the process of finding a Long Term Home Care placement. If they choose to stay at home, often-family members have no recourse, unless they are deemed incapable of making this decision. The case manger is in charge of this protocol.

The client, or designated advocate should the client be deemed unable to make this decision, can take advantage of a Long Term Home Care placement and begins to sign a series of papers, The case manager has permission forms such as permission for CCAC to gain access to information from the doctor, and a facility choice list, which is reviewed by the case manager. Sometimes, if client has dementia issues and behaviours that are beyond the ability of a Nursing Home, or extra nursing care, then they must move to a chronic care hospital. They are deemed ineligible for this more intense care if they can drive, or manage their own needs. Then they are advised to go to a Retirement Home. Files are shared with the Long Term Care Homes on their facility choice list, names will go on waiting list until bed is available: whether it be a private room, or not, or the type of accommodations they have requested on their facility choice list. The client must choose no more than three homes, based on location and physical requirements. We made this choice for my father based on proximity to our home.
As spaces become available that facility will contact the case manager, or the client. When bed offer comes you have a few days to accept the bed offer. It is pointed out that should a resident be admitted to the hospital the bed could be kept reserved for medical leave for 21 days. Otherwise they lose their bed placement and are discharged from the Long Term Care Home. If a resident requires a psychiatric assessment they may stay away for as long as 45 days, this is the only exception to the rule.

We traveled an hour to Orillia to rent a walker. Dad had been borrowing one. The government subsidizes it up to 85% - providing the patient is not in palliative care. What difference this makes I do not know. But the funding isn’t there if the patient isn’t going to last long enough to make the paperwork worthwhile, methinks. We do not care. We need to keep him safe and to allow him to move around. He is not happy with this, but we have rented it. We have to pay one month in advance. Now the trick is to get him to use it. He likes to put his shoes, newspaper and other things in the basket. It is a great item to have – I wished he’d been using one before but only “sick, old people” use them he tells me.

Wednesday, August 2, 2006

Phone calls and tornadoes and power outages

My friend, Eileen, came for a visit from Ottawa weekend. It was her birthday this week and she had combined a visit to Peterborough with a bit of a side trip to see me. I missed my dear friend very much. Brian was in Ottawa and Eileen and I were merrily preparing to have our second day of our girl’s visit. We were down at the water, swimming, when we saw the clouds rapidly approaching. I know we were in for a storm – but what a storm. We casually cleaned up our swim accoutrement and headed up to the house. We opened a bottle of wine and sat on the sofa visiting, watching the winds pick up. I had planned on barbecuing steak later, a fine end to a fine day. The winds picked up and then slowly changed from wind to gusts to a torrent of water and wind. The leaves on the tress were blowing in directions that do not make sense. There were down thrusts of wind, common in the area I found out later. They snapped off branches and surprised both of us with its ferocity.

The phone rang and it was my father. He was very upset. He had his good days and bad days. Today he was most upset, as the TV isn’t working. He had been such a go-to-it kind of man. If anything broke he would be able to fix it and make it right. With the advent of technology some things begin to be beyond his ken and this made life more difficult. At the time I really did not understand how severe this storm would be and I tried to calm Dad down. Our power had gone out and he really could not empathize, TV and his sports shows being much of his life nowadays. I tried to calm him. He was quite upset that I could not help him fix his TV.

I felt as if I had let him down in some way – but could not see myself driving the 30 km in to see him, even if I could do something about this situation. We finished our conversation, I said goodbye to him feeling a huge cloud of guilt settle over me. The winds had abated somewhat, and I began to get the barbecue going. I had never barbecued in the dark, the deck lights being quite efficient. I did my best, without power, and we had a salad with our meal. The candlelight was quite gorgeous. Eileen and I had shared many meals as we had gone out every couple of months on a regular basis to the theatre when we lived in Ottawa. I missed my old life. I made the mistake, in my depressive state, of not reaching out to someone, friends all left behind in Ottawa. I had no support system other than my children and husband. It was not enough.
We took a trip into town the next day. I had to see Dad, and Eileen and I wanted to get some groceries. Many stores were out of power and did not get it back for days.

After visiting with Dad in the hall, I thought it time to go. He hadn’t been all that clear with me. Complaining about one thing and another. I went out to the car and asked Eileen, who was waiting with groceries, if she wanted to see Dad. He was quite happy to see her, although they’d never met. She is quite attractive and my Dad was quite perky seeing my beautiful friend after being morose with me. This is something I had found with many seniors. They were angry with close family, but remember their manners when interacting with outsiders. I was angry at this. He had been begging me to stay longer a few minutes before, but after talking to Eileen, in an apparently normal fashion, he told us to go off and enjoy ourselves. He was a different man. I just could not understand it!

Wednesday, July 26, 2006

Two Doctors in Toronto: The Final Diagnosis

Dad had an MRI in Toronto. The only way to get him there was to hire an ambulance. I had to be in Ottawa and we hired a companion to accompany him on the long (1 1/2 hour drive) to Toronto. Both retirement homes and LTC homes use ambulances to deliver residents/patients to important appointments. Dad was unable to sit up in a car and I could not manage him.

A meeting follows up dad’s MRI with his Toronto oncologist. Dad had a 2:30 p.m. appointment with her & a 3:00 p.m. appointment with another doctor. I don’t know whom the second physician might be, but make arrangements to take Dad into the city. I had met the first doctor previously in Toronto with Dad. Dad is ready a couple of hours before our estimated departure time. He loathed being late. I made it to the residence about a half hour before they are due. The problem with conveying patients like Dad to such appointments, aside from the distance, is booking an ambulance to get him there. I cannot manage him alone. He cannot walk and I cannot help him. The ambulance is delayed an hour and a half due to an emergency in another town. Dad is quite upset with the delay.

Eventually they made it. I sat up front with one attendant - who drove. The other stayed in the back with Dad. Dad needs to urinate every 10 to fifteen minutes or so. This became a problem fairly quickly as Dad is unable to pee in the bottle when horizontal. The kind young man, I called him Steve 2, since the driver is also named Steve (number one!). I can hear Dad and Steve 2 talking as we drove. It is a relief to sit back and relax and chat with Steve 1 while we made our way to Toronto on the highway.

We arrived at the hospital for our appointments and checked in. They take us into a back hallway, where the doctor’s offices are located. We waited, likely a half-hour, after I sent Steve 1 and Steve 2 for a coffee. As we waited I try to chat with Dad. I can hear another man in the hallway complaining that he had driven in from out of town for this appointment and had been waiting three hours. I feel somewhat guilty, since we got in quite quickly to see the doctor, who is now behind in her appointments by a long shot. We are paying for the ambulance by the hour and I kept my mouth shut. Wait times for appointments are one thing, but waiting times, when you are scheduled for a particular time, is another issue.

In retrospect, I wonder why on earth we had to drive 250 km, taking up the time and energy of two paramedics and an ambulance to tell Dad that these doctors can do nothing more for him. It is a distressing meeting. The radiation does not work, the tumour is back, and, therefore, chemo will not do anything for him either. It is Mom who decided that they would go ahead with the radiation in the first place. I truly question it now. If only I had read the statistics and asked a few more questions. If only I had been able to talk to their doctors all along this medical journey.

Dad’s oncologist is going on maternity leave shortly, she meets with us, and then introduced the second doctor, who is taking over her practice while she is on leave. Now things become clear. Yet, we never saw this doctor again. Dad’s oncology treatment is over and it is going to be a matter of time before he passes. I truly do not understand why we had to meet both doctors. I question, too, why there is no follow-up with my father. I wonder why they don’t tell us about the statistics. Is there anything to learn from all this? For example, what is the impact of the radiation? Is there justification for giving an 81-year-old radiation? What is the prognosis? The odds of success are not high, I find out later. Tumours tend to come back in the elderly. Treatment does not have much chance of success.

Both doctors’ ‘bedside manner’ is most empathetic. They are visibly dismayed by having to deliver this kind of news. Dad, once the doctor yelled loudly enough, managed to let Dad know that they can do nothing further. He seemed to understand this, later conversations tell me so. The doctor tells us that Dad has two tumours in his brain right now, according to the MRI done last week. One is inactive, but the other is growing. I know this all along. Dad’s difficulties with language had begun back in the spring. They are similar to his original problems when they first removed the tumour. He was totally aphasic at that time. It is a clue, his difficulties with communication, that there is something brewing. We should look to ensure that he is as comfortable as possible.

The doctor tells me that tumours that do not respond to radiation do not respond to chemotherapy. In younger people they can give it a shot, but in older people there is a toxicity that does them in. We have to manage his health care needs and determine treatment as we encounter each barrier. They said there will be pressure and headaches, as well as increased irritability. I wish I can go back and ask some my questions.

I asked for a time frame and the doctor tell me that when he starts to sleep half of the time he likely had a month leave. After Dad’s surgery in 2003 he would get up to put on the wood stove around 5:00 a.m., then go back to bed for a nap. As often as not he would sleep until 4:00 p.m. worrying Mom endlessly. She complained about this a lot. I am not sure how we will figure this out.

The paramedics came back and they are very considerate. Both Steve 1 and 2 asked the prognosis, and I tell them about the sad but expected news. I begin to feel awfully emotional. I am able to focus on getting Dad back to his residence. Steve 2 is a hoot in the ambulance. He and I talked of lots of different things. I will say he rather babbled. They, too, are most supportive and in giving me their condolences. It is a long drive back north through thunder and rain. By the time we made it back to Gravenhurst there is a huge downpour. I got soaked just going up the 25 steps from the ambulance to the front door. Dad apologized for getting the ambulance wet, as he had lost control of his bladder. They assured him that it happened all the time.

In hindsight – my brother and I had made a mistake. We know in May that Dad is getting worse. We chose a retirement home without any Long Term Care capabilities. It is a great place. However, knowing that he is quite ill, we should have realized that since he is going to get worse it will been easier to move him once and then we will been able to move him from the retirement wing of a Long Term Care Home to the nursing section. It would have been less traumatic since the rooms look similar.

Monday, July 24, 2006

Ears and other bodily functions

Another visit in to see a sleepy Dad. He just does not want to do anything. We respect this. I find his glasses for him and helped him get dressed. By now staff are letting him sleep in until after everyone else had eaten. They bring him a muffin and coffee and juice on a tray. They do not have the staff for such personal care but they kept it up for a time.

Dad calls his room his ‘home’. He will tell me that he wanted to go home if he is in the hall. His stomach is giving him problems, too. He tells me he is, “Grindey in his stomach”. He made it to supper alone some days, and after a meal he feel better. The doctor had been in to see him. Dad wouldn’t speak to the doctor since he hadn’t seen him since Mom had died in May. Dad’s GP is ill himself but no amount of talking can convince dad of that. He is merciless. Dad has infections in both of his ears, his prostate and a urine infection. No wonder he had to urinate constantly. He wanted the pee bottle, rather than going the four feet from his bed to his bathroom. I cannot understand how he can get this ill. I guess the infection he had had last month had not been cleared up.

We ended up putting oil in his ears weekly and washing them out with a syringe and bulb. He is on more meds than I can keep track of. I am so glad I do not have to worry about it. He and Mom are always careful about taking meds at night at exactly 8:00 o’clock. This is still an issue, but not for long.

Monday, July 17, 2006

Visiting Dad's Lawyer

Dad’s lawyer has to evaluate Dad to see whether he is competent or not. He will do an assessment of Dad’s capacity.

I am going to take control of Dad’s financial matters, since Dad cannot even write a check. We have power of attorney for this. Dad was violently opposed to this in June. He thought he could still keep track of things. We have to check out and renew insurance: life, car, home. As boarders living in Dad’s house Brian and I have tenant insurance.

Thursday, June 1, 2006

Dad’s June, 2006 Prostatitis

Dad has an infection still. We find that he still needs much care. He continues to urinate frequently. He is becoming increasingly difficult. Little do we realize how ill he is. I continue to do his bills, collect his mail, and try to look after his affairs. He cannot write checks, but had just enough energy to sign them.

I picked up the mail today. This is to prove the most difficult and long-lasting issues of the grieving process. My parents continually received mail from organizations to which they had made donations. Soon I will receive a letter from my mother’s best friend since her childhood. She had moved to the United States and they hadn’t visited in many, many years. I did not recognize her name in Mom’s address book. She wrote to Mom asking what is going on as she had phone twice and hadn’t heard from her. I had no idea that Mom had kept up with her, nor did I know her married name or recognized the foreign address.

I find her phone number in Mom’s obtuse address book and make the call. There is no answer. I leave a message saying that I am Joan’s daughter and wanted to talk to her. She does not phone for a couple of days and I phone back. This time Betty is home. I explained to her what had happened and feel so very sick at heart. Having gotten in touch with a couple of bereaved spouses in trying to contact all of Mom’s friends, I am reluctant to do so again. We spoke for a half hour. Mom had phoned her and said her good-byes, although Betty did not know it at the time. This is a story I heard several times over.

One issue that concerns me is knowing who is visiting Dad and keeping track of his caregivers. We are promised, by CCAC, that he will continue to receive extra care. I bought a Guest Book, in a silver (manly!) book cover with a silver fine pen for Dad’s room. Some people are most kind in signing it for us. It frustrated him no end when he cannot recall the names of visitors. It is a great investment.

Monday, May 29, 2006

Dad goes into a retirement home

Robin and Brian did the research on the retirement and Long-Term Care (LTC) homes. They tour several in the area and speak to staff. The decision is to put him into Gravenhurst Manor. Brian, with his experience finding a home for his mother, is a big help. I pack up Dad’s things and we talked about the furniture to take. Dad has not visited, but he is not sentient enough to understand.

In hindsight, from the research and recommendations from professionals, I should have packed more simply. All items need to be labelled, too. He needs his toiletries, a housecoat, slippers, a pair of running shoes, four pair of pajamas, and six changes of clothes, i.e., six undershirts, six shirts, six pair of pants or jogging suits. All of these places offer laundry services and this is all that will we need. Also helpful: a sun hat, a winter hat, and a couple of sweaters, and a seasonal coat. There is not a lot of space available. Dad’s room is crowded as it is. Many of his pants do not fit him and I am unsure what to bring. I am overwhelmed. I take far too many clothes in for him. There are things in his room he has not worn in years, but I have no way of knowing this. I will regret this considerably when he has to move, yet again, into the LTC home.

We ease him into the idea, but he suggests that we live with him at the house, despite our two cats - which are afraid of dogs. It is such a battle to get him to come to terms with the move. We reiterate that there is no choice.

I book a local man, Paul, to move Dad’s things for us. He has a trailer and has helped me clear out the basement of 30 and 40 year old things. Paul is terrific. Paul and his friend, “Old Burt”, begin the chore. Burt is nicknamed “Old Burt”, because whilst on a job a client asked where ‘the old guy’ was. Burt is actually younger than Paul. We kept up the moniker for a long time. I keep Dad busy in the living room while my brother helps carry things out.
I drive Dad in his van. We make it into the Manor with no trouble. We have done most of the paperwork beforehand. My brother and husband have visited several places in the area and find this place to be great. They have one bedroom available in a big private room. It is too bad Dad cannot have gone there earlier, with Mom. They will enjoy the atmosphere and the conviviality. We ask Dad where he wants his bed. He wants to face the window. We get him set up

We loved the atmosphere of The Manor. It is a well-appointed facility, with a variety of private, single and double rooms. The furniture is mostly antique, with period nick-knacks meant to make the residents feel at home. The paneling on the walls compliments the polished mahogany pieces, with all the little nooks and crannies that were popular in their day. Antique doll carriages and dolls decorated the corners. The local florist donates an arrangement weekly. The Sun Room is bright and cheery, with new curtains and comfy furniture. There are wide hallways to accommodate the inevitable walkers that made life easier for residents. Located on a main street, there is much local traffic. Parades and other regular events draw crowds and provide entertainment. The annual garage sale is orchestrated to coordinate with the town street sale. Residents are primarily able-minded, with some locomotion issues. They can walk across the street to the various churches, go to Stedman’s for coffee with friends, or be picked up by family for celebratory dinners and special occasions. Happy Hour is a fun time to visit. Some residents move in there for the winter, moving back to cottages for the summer. I am glad that Dad has the money to stay there. It makes life so much easier.

Dad loved his room. Later he will spend many late night hours gazing out of his window. We will look out at the church and see the white lights. He thought they were birds. One day he tells me that the birds have flown away in the night. He liked to watch the people go by.
We saw that the previous tenant had pictures on the walls. Rob and I talk about this. We think we should have one of the cottage or the lake. Robin putters in town. Rob, Dad & I were trying to decide which paintings to hang in his new room. When I went back to the cottage, a painting of our cottage frontage had fallen off of the wall. I figured that is a sign from Mom that that is the one I ought to take in to Dad.

Sunday, May 21, 2006

treatment stops

Robin and I decide that we will not take Dad in for more radiation treatments. He is just too ill and cannot sit up. He is urinating every ten minutes. He is leaving the tap on and letting the water run all night - when he remembers to wash his hands. I find out later that this kind of memory loss is indicative of dementia due to the brain tumour in his frontal lobe. Dad is both delirious, having symptoms of dementia, and fighting the brain tumour. Aside from the aging process, dementia and delirium in old age include the following characteristics. Dementia is associated with, but not limited to, Alzheimer’s disease, vascular dementia, alcoholism, toxic reactions to medication, infections, metabolic disorders, malnutrition, and brain tumours (Pinel, 2006). (See week 9)

Dementia (i.e. senility) is an abnormal progressive deterioration of neural functioning. It means
- memory impairment
- diminishing intellectual ability
- poor judgement
- difficulty with abstract thinking i.e. math, thinking skills.
- personality changes

- changes daily
- disturbance of consciousness
- disorientation, wandering attention, confusion, hallucinations
- affects up to 50% elderly hospital patients
- response to stressors: illness, surgery, drug overdoses, interactions of drugs, malnutrition (Cole, 2004)
- high death rate for those undiagnosed and sent home from hospital (Kakuma et al., 2003)

Alzheimer’s disease
- Accounts for 70% of dementia cases
- Affects 5% of the population age 65+ (Blazer, 1996; Regier et al., 1988)
- Affects 40% of those over age 90 (Williams, 1995)
- Patients die on average 8 – 10 years after onset of symptoms
- 2 -3 years before dementia usually difficulty learning and remembering verbal material (Howieson et al., 1997)

These are all signs. Not all dementia is Alzheimer’s disease, but these are the signs to look for. It means Dad’s tumour is progressing.
- first significant sign is memory loss
- develops into dementia
- affects simple activities: eating, speaking, recognition of family members, bladder control
- neural research is focused on predementia Alzeimer’s patients
- memory deficits are more general than medial temporal lobe damage, medial diencephalic damage or Korsakoff’s syndrome (alcoholism) (Butters & Delis, 1995)
- anterograde and retrograde deficits are major in explicit memory tests
- implicit memory for verbal and perceptual material is often deficient (Gabrieli et al., 1993; Postle, Corkin, & Growdon, 1996)
- level of acetylcholine is reduced due to degeneration of basal forebrain
- strokes in this area can cause amnesia.

Saturday, May 20, 2006

The first funeral- part 2 delirium

For a week Dad was up at night, lighting the wood stove all alone, urinating on the carpet, and falling asleep on the floor. He could not get to the bathroom due to physical, emotional, or locomotor issues. He left taps running and still couldn’t figure out his medications. When we found him in the morning he was there on the floor in a puddle of urine. Dad was so ill we decided that Robin had to take Dad to the hospital. The rest of us, Brian, Caitlin, Jean–Luc, Jesse, Terry, and I took off to attend the funeral. Now, in hindsight, I know that Dad was delirious (see the final section of this book for more information), from either the radiation, his urinary tract infection, or the multiple drugs he was taking.

Dad was so ill this morning. We have a private funeral planned. Robin decides to take Dad to hospital. We had had many people visit for the visitation and Robin had been there. Robin will miss the funeral. At the funeral home everyone asks about Dad and I have to tell him or her how ill he is. Dad is incoherent. We do not know that this is not normal after radiation treatments and he is susceptible to infections as a result of this. Dad is getting up at night, lighting the fire alone, and falls asleep on the floor. He cannot get to the bathroom due to physical, emotional and locomotor issues. When we find him in the morning he is there on the floor in a puddle of urine.

My brother missed his mother’s funeral. At the funeral home everyone asked about Dad and Rob, and I had to explain the turn of events. Dad was incoherent. Everyone said that the last time they saw him he was “just fine.” We did not know that his incontinence was not normal after radiation treatments, and that he was susceptible to infections as a result of this treatment. We did not know if it was the tumour affecting him or the numerous pharmaceuticals. More lack of communication and information--there should be a pamphlet or something that can be given to family members. Mom and Dad were beyond comprehension of the effect and the potential side effects of radiation. Again, they did not ask questions.

The First Funeral

We had a private family funeral a week after mom died. What a mistake.
Our three adult children, Terry, Jesse, and Caitlin, as well as our son-in-law, Jean–Luc, came to town for the funeral. It was good to have family around us. It is a shame that we seemed only to meet for hatching, matching, and dispatching (baptisms, weddings and funerals!). Jean–Luc and Caitlin had driven Terry in from Ottawa. To get Jesse here we had to arrange for him to fly in from summer work in Connecticut. If Dad had not been so ill, it would have been fun. As it was, we were preoccupied with caring for Dad, as well as ourselves. Everyone was great pitching in with meals. The boys all hung out together, Robin, my late forties brother, Jesse (twenty-three years old), Terry (twenty-one), and Jean–Luc (twenty-eight).

Preparing for the funeral and visitation demanded a great deal of me. It was therapeutic, however, to look back on Mom’s life and her life’s work. On the left is her urn, with a few artifacts that represented her to me. The Celebration of Life meant a great deal to me, with many visiting. There were arrangements for her cremation, the writing of the eulogy, preparing the order of events, booking the minister and organist. We had a large celebration in July, when we were a bit more together.

Caitlin met me at the funeral home, and the men went to the house to prepare dinner while we girls set up the visitation room with photos and artifacts. That evening, the men had a grand time getting to know one another again. It wasn’t since Caitlin’s May 2005 wedding that we had all been together. My sons were masters of ceremony at their wedding, so they hadn’t had much time to visit, and Caitlin and Jean–Luc had been rather preoccupied with numerous friends, family, in-laws and outlaws! The wedding was a fine time for the rest of us to visit with my mother, who was in pain but was pleased to attend the ceremony and reception. I prepared a slide show, which included many shots of the kids at the cottage with Mom and Dad. It was lovely to honour those early years. After the speeches, Mom was taken home early by my devoted brother, where she could rest. I had never seen her so weak and was grateful to be focusing on my speech and the joyful occasion.

My daughter and I, Caitlin, bring one vase of flowers home, take one to the church, and another we take to dear friends in town. Caitlin and I prepare lunch. After the funeral my boys, Jesse & Terry, will help Brian and Robin bring Dad home from the hospital. Medical staff cannot find anything wrong with Dad that they can fix. Robin needs help getting Dad home. Brian wakes Jess to dig out the map and locate the hospital. Jess has had a long plane trip here from Edmonton. Jess has fun navigating and finally gets them up to the hospital. They find out he has the map upside down. “Gifted, eh?”

They had a bit of difficulty and make it home long after Caitlin and I have done our chores.

Saturday, May 13, 2006

Mom’s Passing

Brian is going to meet me here at the hotel in Toronto on this afternoon, I presented two workshops last night. I am so happy. It is a much- needed break. It is easy for him to fly to Toronto from Ottawa. I take off early for the university, again, to deliver my remaining workshop. I have heard no word from Bala and hesitate to phone them. While out presenting the workshop Robin has phones me at the hotel and leaves a message. Brian, arriving in the hotel while I am out, returns the call to Robin. Apparently, on Friday, Robin took Mom to the hospital in the evening. Mom asked her neighbours to stay with my Dad, who still is not well. They cannot do anything for her and so Robin brings her home about 3:30 a.m. on Saturday. They went back to sleep and Mom and Robin woke around 7:00 a.m. and talked a bit about grandkids and so on. They have some good chats.

Her breathing gets more and more shallow. Eventually, around 9:00 a.m., Robin looks over to her and she has stopped breathing. Dad, on prescriptions for infections, is quite out of any concept of reality. He becomes very upset and tells Robin to get her body out of the house. Poor Rob has to hustle, with cousins, to find an undertaker to remove Mom’s body. Dad is emotionally distraught, Rob says, and cannot deal with all of the things he needs to deal with. He does not recognize Mom’s body as his dearly beloved late wife. Dad is suffering from prostatitis, which we do not know at the time. He is incoherent much of the time and is having difficulties getting to the bathroom.

I must go back in time to explain this first problem. Mom and Dad named my cousins as executors in their will. We are not sure why, since the will was redone in 1998 and Robin and I were adults at the time. These cousins live in Guelph and it is a fair distance to visit here, especially since they have a farm. These cousins happened to be visiting in the area at the time. Robin and my cousins (husband and wife) take Mom’s body to the Funeral Home and made arrangements to have her body to be cremated.

Once at the Funeral Home, they begin writing the papers. My cousins declare my father unfit to be in charge and take ownership of the problems. Dad is in no condition to take care of these things. In hindsight, my brother and I should have simply signed the agreement with the funeral home and taken control. We have power of attorney for both medical and financial. All of the arrangements have to be done between my cousins and the funeral home from now on. We cannot even take her remains out of the funeral home, to the memorial service. Our cousins have to sign a letter as executors giving us permission. Later we take this control as Dad is incapable of physically singing checks and making financial decisions, but that is a long way down the road.

In the meantime, my cousins begin acting as executors and once they have done so, since Dad cannot at the time, they have complete signing authority for all matters. This became a problem later when trying to remove Mom’s name from documents and put them solely in Dad’s name.

By the time Brian and I arrive from Toronto the funeral arrangements are arranged and the contract signed. We write her funeral announcement at the funeral home, which has been started by my cousins and my brother. Robin does not know some of the names. In hindsight, we should have postponed the small family funeral until a later date, rather than having it a week later. Her obituary leaves out her dear adoptive sister in Lethbridge, whom I had not seen in more than 25 years. I feel badly – another mistake.

Mom and I spent some lovely, quiet, peaceful times together during her final months, in between arguments. Mom know that they need new carpets and she do not know if she should get them in green for her or blue for me! In March, Terry phone her to thank her for his birthday check and she admitted to him that she ‘isn’t very well.' She was nakedly honest with him. She knew he do not like any guff!

Friday, May 12, 2006

Losing one's mother

A post entitled, Mother as Place, makes such sense to me.
Our mothers provide unconditional love, in a healthy relationship. This is why the death of our mothers has such a profound effect upon us. Mothers are our spiritual home and hearth. Mothers are there, even if only at the end of the phone, to listen to our woes, our travails, and soothe our troubled souls in the time of many of the normal and traumatic life passages we face as adults. I changed jobs and moved from city to a small town, to care for my ailing mother and father. It was no wonder that I entered into a depression. I was living in a foreign country, as it were. Not only that, but my new school board operated under a different culture than I was used to. I was swamped with change. However, after a lifetime of listening and providing only sought for advice, my mother and my relationship changed profoundly.

After a lifetime as a beloved “chosen” adoptee, and living a life of unconditional love, things changed. My mother supported me in the past in getting an education, in dealing with an unhappy marriage, raising three children. She saw me through a divorce, buying a small house on my own, and a joyful second marriage. There was no question that she was behind me. Once my mother had bravely fought her 5th cancerous lump, our relationship began to deteriorate. I knew we had to come to terms with this stage of life and read all I could. Mom wanted no part of research or literature. She followed physician and oncologist’s recommendations to the letter. She found a lump just before my 2nd wedding and put off surgery until our wedding was done. She had surgeries again in 2004, 2005, including removal of her lymph nodes, which led to lymphedema in 2006. She had radiation in 2005, chemotherapy in 2006 all the while suffering from colitis, poor hearing even with a hearing aid, wheat allergies (celiac disease), agoraphobia and a husband who had a brain tumour.

Living 430 km away was difficult and I insanely believed that we would both be able to participate in the dying process honoured so well by Elizabeth Kübler–Ross. We fought over her care regime, the condition of her house, my life path, and it was a shock to me. She was so ill, yet sentient, and seemed afraid that I had moved here to get her out of her house. The choices I made in moving closer to be of help to her were conscious ones, but she wanted no help. It makes sense to me now, having written and thought long and hard over it. We could not agree on having her accept home support. She refused such help until her last month of life (May, 2006).

Mom was in charge of my father’s care by long-distance and phone. She made decisions about his care that were contra-indicated with all of his comorbidities. On the phone she spoke to the oncologist and they decided that dad was to be swept up, taken to Toronto, given radiation, then, when the radiation didn’t take, being sent home to die with little in the way of home support.

I went into a depression and had no hope of getting myself help, since I was too depressed to reach out. I was isolated from friends and immediate family, and it ended up that my extended family seemed not to understand, for the most part. I was scolded, lectured and ostracized by various branches of my family tree. I gained weight, overate, became solitary and threw myself into solitude by the lake. At the same time, I was working in a job that was stressing me beyond all reason.

I look back now and I can honour my mother’s choices, and feel no guilt that I was not there when she died. She sent me from the room the day before she died – perhaps to protect me, I am not really sure. I felt anger once that she did not think me strong enough to handle this. Our views were different on death and dying. We both embraced a belief in the afterlife. We had strong beliefs that we would meet our loved ones in the afterlife. Mom was psychic to a certain extent and foresaw the passing of my uncle. Our faith in God was strong and family life included regular attendance at church. But when she was so ill, in pain and denial of her situation, things fell apart. I know I did the best I could at the time, with the information I had on hand. I will never regret the choices I made. I hope that in writing about them it will help others.

Recommended readings:

Kübler–Ross, E. 1997. Death: The final stage of growth. Carmichael, CA: Touchstone Books.

———. (1998). The wheel of life: A memoir of living and dying. Carmichael, CA: Touchstone Books.

Kübler–Ross, E., & Kessler, D. 2005. On grief and grieving: Finding the meaning of grief through the five stages of loss. New York: Scribner.

Mom's final days

Mom gets weaker. She eats about a tablespoon of food a few times a day. I ordered potato salad from the corner store. I order it specially, as this is not tourist season and they do not have much in the store. They were most amenable to helping me out. She ate little of it. She sleeps and eats a mouthful and that is all. She is very tired. Today I leave for Toronto for the Conference. I phone the Community Care Access (CCAC) people yesterday and asked them to send someone. Rob and Dad are expected form Toronto around noon. Until then she will be alone as I have two workshops to present on Friday and one on Saturday.

I check on her at 7:45 a.m. and she cannot physically get up. When she woke she said she feel pressure on her lung. She cannot breathe very easily and when she sits up she gets dizzy. I tell her to lie down. She is coughing up small amounts of dark mucous. She has a sip of water and then I phone her Doctor. I ask if she wants to go to the hospital and she said, “No, Let’s wait for Doctor. To arrive. He may have a solution.” She sent me out of the room. I know I am stronger than she thinks I am. It is a peculiar situation for me. I had seen all the shows where the family gathers around a bedside. They get back as much as they receive in being with ailing family members. I did as I was told and went downstairs.

By 8:00 a.m. the cat is pacing and the dog is upset. I clean the basement out since they are coming to install a propane furnace. It takes me two hours to sort through the years of junk. The dust is incredible. It is good to do something worthwhile.

It is pouring rain. It cleared, but another weather front is moving in. The water pond pump is off, likely broken, and I have another phone call to make. The rain lasted all night and the pond has over flowed. Maybe it is just a circuit.

By 9:15 a.m. Mom is wearing her adult diaper and I have to change it for her. She cannot do it herself. It is humbling to help her this way. Finally the doctor arrived. He tells me that there is thrombosis in her right leg, which means a blood clot. He said it is the tumour that is pushing up on her lung and she is now palliative. He asks her wishes and I tell him that she wants to stay at home. There is nothing else they can do. Dying is hard. It is comfortable here and the same things will be done here as in hospital. He tells me he will order oxygen to help ease her breathing. Lana, another nurse who has never been here before, is coming for 11:00 to 2:00 p.m. I meet her at the front door and explain the situation. Mom do not bother having her pain pills Rx filled a few days ago after the failed 2nd chemo visit. Robin will have to do this. Big mistake. Rob and Dad are due about noon. I have to leave.

After I leave, a company delivers oxygen: a mask and a tank, which they take upstairs to her. Mom wants to come downstairs, but I want her to save her strength. In my note to my brother, in the communication book, I fervently beg him to keep her upstairs. I need a place to sit to get a break; if she is down here there will be nowhere to go. There has to be a place for me to just sit and relax. If she is in the main living area it will be very difficult. She has been coming downstairs every day – a few steps at a time. I have to walk behind her when she went upstairs at the end of the day. I am afraid she is too weak to climb them.

I buy Mom some flowers in flowerpots before I leave for my conference. She always liked large flowerpots on the deck. I buy a small bud vase for the table, with a carnation and a little bear that said, “#1 Mom!” on it. I am so glad I did. I will be back the day before Mother’s day, the 14th, but I know I have to act quickly. Who knows what I will time for later?

I take off around noon to go, driving to Toronto, and preparing for the three workshops I will deliver. It is a pensive drive. How relieved I am to get a break and take my mind off the stress of caring for Mom; an independent, fiercely private woman disinclined to let anyone know how ill she is. I continually asked relatives for help but Mom denies that she needs anything from them. She tells close friends not to visit. I think, in retrospect, that she is ashamed of the state of her home and her inability to keep up the meticulous housecleaning practices she is used to maintaining. She refuses to wear her adult diaper except when I nag her. There are spots on the carpet all over the house.

The Red Cross caregiver gives Mom a half glass of SoyNice. Since Mom has problems with milk tolerance, this is a terrific meal replacement. Easy to drink. Corinne, the CCAC nurse, came by and leaves a note. She will have a nurse there daily.

I made it to the hotel, take valet parking, check in, and try to get organized. I unpack my things and change my clothes. I buy myself a nice dinner and check my e-mail. I spend some time working on my three workshop presentations. I should have phone home, in hindsight. I do not want to disturb anyone, I guess. I trundled off to the university where I will present that evening. It goes well and I quite enjoyed the experience of sharing my expertise with colleagues. It is comforting being at this end of the learning curve. I feel confident finally after years of feeling as if I do not know anything.