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.