Monday, April 17, 2006

Mom admitted to hospital

Nearly three weeks in Muskoka had zipped by. Mom was to have her second chemo treatment. She was optimistic that morning. Her steadfast faith, her stubbornness, and the necessity of staying in control drove her. She refused to let me go with her. She phoned for a Cancer Society volunteer driver.

I toddled off to work to try and keep my mind off of things. Work certainly did that. School was becoming increasingly difficult. My students were demanding, needy, Grade 7 and 8 boys who had had little success in their lives. They kept me on my toes. I knew that with enough time, support, patience, counselling, discipline, and remedial work, I could have helped them achieve some academic success and produce some good effort. Unfortunately, I had little of any of these things. They were vulgar, selfish, hormonal boys, with little respect for women, growing into men’s bodies. I had no means by which to maintain control, despite my stabs at behaviour modification programs; it was a difficult battle. I loved my work, I knew I was good at what I did, but every day I had a knot in my stomach as I began to anticipate failure. The only time I felt peace was when on the highway driving between home and school. With the sun roof open, the heater on, and the wind in my hair, I could stay in the present.

This month my favourite music was Josh Groban’s beautiful tunes from his CD Awake. I didn’t understand the Italian songs, but hummed my way across Central Ontario with them. I sang “You Are Loved (Don’t Give Up)” with him over and over, trying to will myself to be positive. I tried to e-mail Mr. Groban's 'people' to get permission to print the song in my book - but no one replied.

Mom began her day in Orillia with a CAT scan. It told the health care staff that she had an embolism, a blood clot, in her leg. Part of this is due to her lymphedema. Instead of having a treatment, Mom was admitted to hospital. She was furious and frustrated. Without her overnight bag, no phone book, no forewarning (Mom could plan her way through a World War), she phoned and gave all of us sundry orders! Beside herself with stress, Mom called several neighbours to make arrangements. She said they “whisked me off the street and admitted me,” and she was beyond any comprehension of the seriousness of her health issues. Had she not been warned of this potential side effect? Was there no explanation of the risks of removing the lymph node? She was not in control--she could handle anything if she had time to plan and take charge of it.

I navigated my way home from work, oblivious to the furor at home. Along the highway, I passed sparkling lakes and shadowy forests; I turned the heat on in the car and opened up the sunroof. It was good to feel the sun.

Then I arrived home and checked in on Dad. It was stressful to say the least. It was a shock to find out the latest news about Mom. One of Mom’s friends, given the task of finding Dad a ride to his dental appointment the next day, was swamped with things she had to do. Dad and I had a great moment when Mom phoned from Soldier’s Memorial Hospital to give orders. Dad felt he was too stressed with worrying about Mom to go to the dentist the next day. He grinned as he held the phone away from his ear--I could hear her giving the Orders of the Day. Dad rolled his eyes as she gave him heck for not wanting to go to the dentist.

Mom never told Dad how ill she was. They never spoke of it. It angered him, he told me later, as she did not give him a say in their treatment plans. He harboured his stress internally. Mom could not let go and let me handle these arrangements. I think I was still perceived as a little girl. My mother was no longer looking after me, but neither was she giving me any credit or responsibility, and I had to look after myself. Dad wasn’t hungry, so I went into town to do errands and to have a well-earned yet solitary dinner.

Friday, April 17 E-Mail

Friday, April 17, 2006 at 4:36 PM -0500 my cousin wrote:

Thanks for giving the go-ahead to call Joan. So- I called this morning and had a really nice chat with her. Got Ray first and he sounded clear and can hear me fine so that was encouraging too.
Joan mentioned the news they had received that Ray's tumour is back and that he will be going to stay at the Lodge in Toronto for chemo where Rob will assist, having taken leave of work. She feels thankful she could prepare Ray for the chemo.
She said one morning in the shower her hair got all tangled together but that Gracie had come over and cut it short for her.
She was delighted with the little hats you have given her and a friend is going to take her to Bracebridge to select a wig on loan.
She is happy that you are able to stay at the neighbour's while you start your new job and therefore are able to get over to visit each day. She is so very appreciative of help from you and neighbours and friends in the church. She says, "Jane has been a brick" for a number of years.
She is very emphatic that they have no desire to move out of their home at this stage.
She says when she feels they need to, they will and until then, does not want family or friends to encourage them to move anywhere.
She says she wants only encouragement and support so that she can have positive feelings rather than worries to offset these suggestions (helpful as others may think they are) so can use her positive feelings and energies to deal with their situation.

I asked whether she was able to get help for cleaning, and maybe some cooking etc. in the house now that both of them are sick. She said she is looking into this so maybe you can facilitate putting it in place. This could be a more acceptable solution to her than moving.
She is amazing in her attempt to be positive!

I encouraged her to continue to accept the help of friends and neighbours
I think everyone can understand her desire to stay in her home. Most people want to do so as long as possible. My Mom and Dad were the same. After they became ill, we hired Anna, a Philippino young lady, to live there and get meals and do washing and cleaning.

My response:

I think it is fine to call, the only problem has been that when Mom rests (after breakfast, before and after lunch, etc. she takes out her hearing aid.
Dad rests after breakfast (6:30 a.m. or so) before or around 9:00 is the best. Then he sleeps until around 4:00.
Dad’s having radiation!
Mom’s hair has fallen out. It is quite shocking. It is cut short: about 1/2 ".
She is gaunt and has been losing weight. She is quite feeble looking and nauseous.

This is part of what she is surviving on. They have a freezer load of food, but she is exhausted and cannot cook.
Dad cannot stand up for long. His knees are VERY painful. His hearing aids whistle constantly. Brian takes him down to the hearing aid place last time we were there, but they say there is nothing they can do. He fiddles with them, turns them up and then swears, something he has never done, and ends up resting. He fell once bringing wood in, but might fall again.
Mom cannot bring in wood. They heat their house with the wood stove. This next chemo treatment (today, Easter Monday) might just be too much for her.

She had a friend who said would take her to get fitted for a loaner wig.
Since she cannot sit up for long in the car, I do not know how that will work.
My understanding of chemo is that you have three weeks between bouts, by the third week you are somewhat recovered but she is in pretty bad shape.
She refuses to let me either drive her to appointments or to go to the doctor with her.
Our suspicion is that there is a low survival rate for it and she does not want to ask the questions. I do not think she is in any shape to take another treatment but my hands are tied.
She has been refusing home care, although she may have come around on that one.
There is excrement on the carpet, she cannot wear her depends as they chafe, or she refuses to and with her colitis she is rushing to the bathroom every half hour or so. I am going to look for cloth diapers as she might wear those. There is mold around the windows, with the heat and all, dog hair everywhere. I borrowed the van to drive to Ottawa to bring back classroom supplies and Brian had it professionally cleaned, not steam cleaned - there was not time, and there is still dog hair. It is over all my work clothes.
She cannot vacuum much, but does when she thinks she has the energy, and I believe it wipes her out. She made the effort to make her rice bread and had to rest and lean on the counter regularly.

Jane realizes that they cannot meet ANY of their needs independently any more: Mom cannot drive; Dad had his license taken away.
Every suggestion I make regarding calling her CCAC health care coordinator is met with stubbornness.

Dad cannot manage the wood stove and the fire. This is what he has intimated to many people. Mom is unwilling to do move to a house they can manage. She tells Rick that she wants to die there. I cannot fathom how I can facilitate all this. I have a job to do and Brian is at home, in Ottawa, selling the house, I hope. Although, one agent went through the house on Friday and closed the door to the litter boxes and the cats defecated on the NEW carpet. Our wonderful Ottawa neighbour cleaned it all up. The realtor paid for the steam cleaning.

She has made it clear that she wants to remain in the house. Nevertheless, they are living in filth. It is emotionally painful to see her. If she would accept any kind of, say, homecare support, they might manage. A person to clean, help make meals, get groceries, then she could manage, but she is depending upon kind neighbours for everything. If it were short term, i.e. after chemo, she'll be fine, that might be OK, but she is calling up favours from everyone: Jane gets mail, Rose driving Dad to dentist tomorrow, and they are getting tired of it. It is no longer reciprocal i.e. one does favours for one another. She adamantly refuses to put any support in place. At the point in time when palliative care might kick in, we would be OK. But at this point I cannot believe the situation and I am stressed and upset.

I do not have a phone, voice mail or Internet access on a reliable basis. I tell Mom I was putting a phone in to the cottage. (I do not ask!) There is nowhere for Brian to leave me messages. We are selling a house and finding it tricky. The thing is, I cannot be there to welcome Bell in to service the house and cannot depend upon Mom to be able to answer the door. She did condescend to have me book a carpet cleaner.

She is being obstinate and refuses all supports. She is being unrealistic and will not ask the doctor the right questions. I will liked to ask the survival and or treatment rates, but she will not. We do not know if this is killing her or will eradicate the cancer or will give her another year or two.

The house is unlivable in that there is not main floor bathroom. The dog is urinating on the carpets. The den smells badly from the cat urinating on that carpet.

Robin will stay in the cottage as soon as it warms up but mother refuses to turn on the water until May 24th. She thinks that there is a risk of freezing.

They turn the TV up so loud upstairs, when they go to bed at 7:00, that you can hear it in the cottage. We went over, from Jane's, to watch our favourite TV show: West Wing, and she came roaring downstairs upset that we changed the channel, since both TVs work on the same satellite.
Brian has been a brick and it hardly seems fair that we are the children and cannot have anything done for us.

She is using Cancer Society drivers to get them to and from appointments. She refuses to allow Robin to drive their van down to Toronto.

The Cancer Society drivers are volunteers and she is abusing this service.
She refuses to believe that Robin can drive himself, will not take his needs into account.
He will be staying with Dad when he has his radiation, living in the same room in the hospice.

He has pills and one treatment a day. Because Robin missed a car ride to a New Year’s party when he was 18, she refuses to believe that he can take responsibility for the minivan and then have some freedom to get Dad to and fro. She has to do it her way.

They are tired, too. It is every day something new to be done. They need salt for the water softener, food for the freezer. Brian and I couldn’t lug it. They talked Robin into buying it for them.
This is certainly the last winter they can manage.
They need a propane furnace put in.

The cottage we need to have renovated so that the bathroom is usable for us, since we may have to live there once our house sells. I cannot put on my make-up, shower and get ready for work in there.

I do not know if I can stay at my school - another long story. We do not know where to move to, either, until I know my September plans.

She refuses this help. She is too tired to phone people.
She does everything herself since no one could possibly do it her way.

I am incredibly stressed out by all this. Frustrated, too. I cannot fathom how they will manage the next while. Mom is alone all day, the health nurse pops in, but she is NOT TELLING ANYONE THE WHOLE STORY. She is in denial. I am letting it all go. I can only deal with my job. I cannot stand it any more. Robin will be here Tuesday night and he can deal with it.

I have to drive home every other weekend for my course, which finishes the first weekend in May. Then I have a presentation to give in Toronto, 3 computer workshops, actually, and cannot work on them well, since I have no computer access. Because I do not have a home, and cannot get Bell in easily.

I will be taking a postal box at the post office. They do not want to, since I have no evidence of living there, but cannot change car insurance, etc., since I don't really have an address, plus our rates will go up once we move. I have no phone... well the circle goes around...
It is a long story.

But this is it... OUR reality. Not Mom’s.
Take care, thanks for writing.


Then another cousin, a doctor, writes with comforting words:
Hi All,
I had a short chat with both Ray and Joan yesterday about 7 PM their time. Joan's voice was high pitched and weak, Ray was matter-of-fact, as usual. I really could get little information from Joan other than that she is going to have her chemo on Monday, and Ray having radiation. She acknowledged her loss of hair, but only when I directly questioned her. She was accepting of the situation on the surface, but clearly not wanting to elaborate, and in denial. I do not have your email at the time, Jen.

Why this stubbornness? It's in the genes - look a Grandma - she refused to ever get on the subway, and our Dad? And Lill? All textbooks of stubbornness. This is a fine example of a gene pool of stubbornness. Stubborn is good servant but a poor master. This makes it extremely trying for the family, and particularly you, Jen, shouldering much of the stress. It makes me wonder though, how much of this behaviour you are describing might be from the organic disease - toxic effects of the tumour, or treatment. I don't know.

Unfortunately there is not a quick fix. I have seen this pattern repeatedly in my own practice, and the only way anything would change was if someone just made arrangements, and have them move them into a facility that could deal with the situation, but this do not always work. When it did, there was a sudden mysterious compliance, but no discussion about it. Sometimes as the family doctor I had to do it
myself, with the family's blessings.

I can understand people want to live out their years in their own home, but there comes a time when that is no longer a reasonable option. Denial, pride, control, fear, face-saving, etc etc all play into the situation. And from your description it sounds like there
is not all that much time leave. Is the family doctor really aware of the situation? Has he seen the house first hand, or have you had a chance to talk with him?

Our prayers and thoughts are with you, but I know that's not much help. It sounds like you need to divest yourself of some of this stress! Hang in.

Relatives are here for a week, leaving tomorrow. Every day is a feast, but then it's been raining most of the time and what else to do but eat (and attend church). Today the sun is blasting forth though, so it's off to the beach!
Your cousin.

Tuesday, April 4, 2006

Choices & Risks

It is April 4th and Mom’s 81st Birthday. While this is about dad's brain tumour, mom's illness has a huge impact on the family. Both the two of them, and the rest of us: my daughter, sons and husband.
After a day spent cleaning, sorting and trying to get my head around my new classroom in Parry Sound, I drove to Bala for a visit and dinner. As usual, with Mom’s obsession with perfection, everything is preplanned. All of Mom’s parties were done with panache and grace. She very clearly has a menu. Two neighbours are invited and are here when I arrive. They are terrific family friends, helpful women, both widows, who have done a great deal to help mom and dad continue to live here in their home. One of them picks up the family newspaper, get the mail, and picks up items from town and the other does the Kitty litter every day, amongst other chores.
We make the meal and the three of us work at it, while Mom is on the couch. She is tiring out as she directs the work from where she lays. She wants a particular dish for a particular food item. We cannot quite figure out which is which. Are we ever stressed! I tell her that we cannot find the right green bowl for the chutney; another bowl will have to do.
She said, “It’s my birthday. I can do it my way.” Absolutely adamant! I now understand that I cannot change anything. Mom wants to remain in control of the small things, since she has lost control of the big ones. We announce dinner. We gather round the table, even Mom. Mom manages a few mouthfuls and goes back to lie down on the couch. It is shocking how ill she truly has become.
Dad is back to his chair, reading the newspaper. His tumour is back and he is to have radiation. Robin will take time off work later in the month. This new reality is hard to reconnoiter.
Once of the issues of aging is aging gracefully and with dignity. Seniors needs to make choices that take everyone into account. A senior with ill health impacts on their spouse, their adult children, the community, town, and society. Seniors driving who cannot see properly, or make decisions, or hear traffic have an impact on other drivers. Seniors who make demands on family members and neighbours need to make choices about their situation. We raise our children to act as responsible adults. As adults, we need our parents to make choices that respect us as family members. Stories abound about 90-year old seniors staying alone when they are unable to either cook, or remember to cook. They end up making phone calls at all hours of the day to family members who may not be in a position to support them. I know I was torn between my adult children and my ailing parents. If our parents will not make choices that respect the impact on others, then we, as adult children are responsible.

The same is true for one's spouse. As adults we have to make choices that look after us as caregivers. If you are caring for an ailing spouse with dementia there comes a point when you cannot cope. There comes a time when you have to put the oxygen mask on yourself. Dementia is a scary symptom and difficult to deal with beyond a certain stage.