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.

Wednesday, May 10, 2006

Make a joyful noise

“Make a joyful noise unto the Lord” is the motto that drove our family. I had sung in choirs since I was in my early teens. During my long drive to work, I found solace in music. I played various CDs and sang out, sunroof open, at the top of my lungs to the animals and trees and small lakes I passed on the long drive to work. There is peace either in singing or listening to music. I played Meatloaf, lots of vocal music, Christmas music, and I cranked through Messiah several times. Colm Wilkinson’s album Some of My Best Friends Are Songs (2004) struck a chord for me. From “We Are One”: “The slower you move; the faster you go.” I tried to contact Mr. Wilkinson, but he failed to respond. I wanted to print the words from this song as it helped me focus.

These words resonated with me. I needed to be positive and work from my inner strength and access the strength of my family. I used to feel that we were a family and that I was not alone. I memorized the entire CD. I tried to go slowly, feeling burned-out and stressed beyond belief. My work was destroying my confidence in myself as a teacher. My inability to look after my mother very well was destroying my self-esteem. She would accept little outside support and would rebel vigorously against suggestions that we bring in caregivers or find her another place to live. We did have a nurse, Christine (she did not have any choice about the nurse). I rather liked Christine, and we talked about Mom’s case.

Mom did accept help, finally. We had had an argument; I wrote her a letter articulating my frustrations, and we made peace. I knew then that she was really ill. It took me ages to convince her to accept the wonderful services the health agency provided. It turned out that all of her caregivers were terrific people. Although many of her friends had worked hard to help my parents meet their needs in the past few months, and most of them understood and respected Mom’s need to do it her way, the time had come for expert assistance. There was Mom's way and the wrong way. There were Hospice non-profits that could help, support staff that could be hired. I have never been so angry with her. An alien came and took my real mom away. I was left trying to care for someone who denied her illness and no longer cared about my needs. The cancer so coloured and framed her life.