Italics are my e mail diary entries
Lee Anne Tennyson died at home March 14 at 11:30 pm. She had Denise Needham, her life partner of 20 plus years at her side along with sister Louise.
December 31, 2011- Diary entry from Lee' day timer calendar on - Total patients visited 1,214 in town critical 39 as a United Church Chaplain
January 2012 was a full work month NORMAL in most ways.
January 31 went to the emergency and had a cardio work up because she felt a heavy chest and she got an x ray. All OK.
February 3- went to doctor with what she thought was a bad cold and cough. Given xray and told :You have pneumonia. Here are some pills and a puffer. Lee continued to work because as she said I don't feel too bad. Admitted later it was a bad idea.
February 15- a second appointment - pills not working. Got more pills different and stronger kind. Starting to be short of breathe.
Friday February 17- Lee was called in to take a second x ray The radiologist compared the first to the second x ray and Dr. Arndt sent her to the emergency to meet a lung specialist. Lee called from the General said "I am being admitted" and so our life changed in that moment. They did a CT scan and arterial ultrasounds done on her legs found a large blood clot on her lungs and after an ultrasound of her legs found many clots in her right leg. This is called DVT Deep vein thrombosis. They put her on blood thinners immediately which were fast acting shots in the belly and later pills- warfarin or Coumadin commonly known as the same stuff as rat poison. It’s a marvelous blood thinner. She had other tests which ruled out blood clots anywhere else.
The doctors said there was something else going on in her lungs, but they
thought it was a rare lung disease that could be treated with 6 months of
prednisone. They were certain it was not cancer, but wanted a biopsy done just
the same, which they did on her right lung.They also found many suspicious looking they called them 'cysts' on her liver, bladder, kidneys. She was scheduled for a lung biopsy and it was done on February 24 at 10:30 pm She tried to have it for 3 days before and she prepared by not eating anything all day long. She had a chest tube and that caused a lot of pain. Had it out 2 days later.
Early Friday March 2 - Sometime in the morning she was told she had metastatic
adenocarcinoma. cancer but no details and she did not tell me this on the phone. A nurse told Lee " Better get your husband. The doctors will want to talk to you soon about your biposy and prognosis."Lee says" I don't have a husband.I have a partner"
Nurse says " well you better tell him to come in"
Lee says "My partner was in yesterday and she is a woman" The poor nurse felt bad.
Then we waited and waited. A gift of Belgian chocolate coated fresh fruit arrived from the Spiritual Care Department so we laughed and giggled and ate fruit. Lee had chocolate smeared on her face and I wiped it off. The news was sinking in.
Lee and I discussed yesterday we plan to approach this whole process with the attitude of gratitude and celebration. I asked Martha Cole to do up a nice sign to pin on Lee's bulletin board that says "We live our lives with gratitude and celebration"
We got the results at 5:30 pm. Lung cancer stage 4. Go home for a day pass Saturday March 3. We did that and Lee LOVED being home. We got every detail of our life in order, wrote parts to a obituary, and thought about a service.
Dropped Lee off Saturday night fully expecting she could come home Sunday.
March 4- Nurse cut us off at the pass and said we had to wait for the doctor. Dr. Duffy came in at noon and told us “It’s bad. You have stage 4 lung cancer. We’d like to find out where it started so go home but come back for tests this coming week.” Prairie oxygen set us up with portable gas plus at home they set up a concentrator. Moved some furniture around so Lee would have a lazy girl chair at her bedside.
I have created a name for our dear friends and support group Circle the Wagons as I see and feel you surrounding us with love. I have yet to see if Margaret has a personal email address she can access through work. Then I will add them to the list. When I send a message to this group you will be the ones who receive my most vulnerable thoughts and feelings. No one else will hear these kinds of details.
I asked Lee last night when I dropped her off if she thought of any time of the day or night that would be the most difficult. She said no she has not noticed that. I expected I would have a particularly vulnerable time and it would show itself to me.
I woke up around 4 this morning and laid in bed wanting to fall back asleep. I gently attempted to calm myself and ease back to sleep. I tried to remember the last time we made love and the last time we rode horses together. Thank goodness I keep a horse diary so I can look up the last riding experience then say to myself "oh yes.... I remember we......." . So as I was riding in my memories the dam broke. I knew it would happen I didn't know when it would happen and I didn't know what would be the dark vulnerable time. Now I know its night time and when I wake up to pee and can't go back to sleep. Maybe I could wear attends to bed and let er rip and keep sleeping....
So the dam broke and I was racked with tears and sobbing and in a weird way it felt good because I knew it would come I had a brief moment of being afraid and I desired some witness and comfort. I hesitated 1 second then dialed Mary to come and hold me at about 5 am. Bless her she came and we had a heart to heart talk. I want to record in a real way this experience and if I write emails I can save them and look at them later. I am finding I feel confused not remembering who I told what. So I ask to bear with me as I sort all of this out.
We will have a heart to heart with Su and Beth soon in person and we will express our gratitude. Yesterday with Martha and Heather was so good for both of us. Nelson and Margaret's visit was another highlight of the day and we both feel love. Lee even got a smack on the lips from Nelson and that’s a first! She felt special.
I asked Mary to be my 'go to' person and she agreed. So she will contact you at some time.
Lee as you know is so skilled at providing care and comfort to others. Receiving care has traditionally been a challenge so she feels surprised at the out pouring of love and concern. Together we talked and we both realize this is a total experience that needs to be shared and we realize you will have your moments that come up for you. We trust that you will handle all of this in a way that works for you. She says its not all about her. Its about the trail ride, the wagon train and circling the wagons when we need to. When we ride on the Wood Mountain ride there is usually one noon hour where the trail boss circles the wagons. There is something magical that happens. People walk around and visit in the circle perhaps meet people we have never met before. We often forget names but rarely forget their horse! Oh yeh you remember the woman with the red roan and her husband with the blue.....what were their names?! (As it happens they are Don and Barb Wilson from Coronach area) which reminds me I will have to tell them. They are wintering in Arizona at the Gotno Ranch with their roans - you know- got no time got no money! We share stories and ask what people have been up to because we see them usually once a year. People always remember us as the independent women in the bus.
My stomach grumbles so I will eat some cereal and then head to Regina to bring Lee back for the day. We plan to stay horizontal all day and just be. Marge Kent comes at 4 pm and she is the United Church minister in LUmsden- Lee's personal minister. Perhaps we will ask her about the process of getting married.
I know you will enjoy the waters and remember me running into the men's bathroom!
I just got a call from Lee at 7:15 am The nurse said she could not leave today until the doctor talks to us. They are going to discharge Lee today and she is going to be declared palliative and she can come home. I write this with tears in my eyes and I will go an see Mary and Iris now then I will drive into the city and take my time.
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Circle the wagons!
Lee and I came home this afternoon around 3. So Lee's word Palliative is the right word. I drove to Margaret and Nelsons and they offered to come in with us and be there when the doctor came in with 'the news'. Unfortunately Dr. Duffy could not see us until after 1 pm. The morning was filled up with a visit from a physiotherapist who gave us a requisition for a wheel chair for Lee. She cannot walk more than a few feet without having great difficulty breathing. It took quite a while to get the paperwork in order for a discharge. Its started to sink in when we saw the paperwork with the heading "Request for oxygen palliative". Also the morning nurse used the word palliative. At this point no one had come right out and said "You are palliative". We told Margaret and Nelson they might as well leave and spend time with their family so they did and we phoned for a pick up later in the day. A resident came in and asked if anyone explained anything and we said No so he sat down and went through it all very carefully and gently. He was wonderful. He explained they will send Lee home and tests will be scheduled this week. We will be called for times and days. Unfortunately they cannot be all done on 1 day because of prep. She will have a thyroid uptake, and MRI for pancreas and ultrasound of pelvis. They want to find the primary cancer. When we know what it is some options will be presented to us probably from the Pasqua Cancer Clinic and we will make a decision on what direction to take. Lee wants to maintain a quality of life and she see no point in adding sickness from chemo unless there is some indication the effort will truly extend her life. She wants quality over quantity. Well what Lee REALLY wants is NO CANCER and 20 years! But it isn't going to happen.
So Duffy came in 12:30 and he said "you are stage 4 lung cancer palliative". He explained that being designated palliative means you qualify for perks like oxygen and drugs. I will give Lee a shot in the belly daily and this costs $1000 a month! I told Duffy I can give a horse shots and I whack the horse first then dart in the needle. He wondered about me until I told him we just celebrated 20 years He then congratulated us!
The drugstore will arrange for approval tomorrow morning so then you tax payers will cover the costs.
We came home to a fridge full of food and those beautiful comfort quilts! How lovely! Now that’s enough food! Holy smokes! It is much appreciated. I visited with Mary for short while around and when I came back home I found Lee's minister Marge Kent in bed with her! I jumped in to with come crackers and hummus and we had great conversations. Lee worked a bit more on her struggle with Christine's' death and Marge helped her discover that her anguish was a lament of great sadness. Marge has joined the team where we all teach and we all learn. A technician came and set up the oxygen and gave me a lesson.
I'm tired tonight. I helped Lee have a shower. Iris will drive Lee to Regina tomorrow for a blood test, pick up a new wheel chair after dropping the borrowed one at the General. Duffy wants an INR reading which tells the viscosity of the blood. Then he will call me and instruct me to give Lee shots in her belly This way she doesn't need the normal weekly blood tests in the city. That much travel would play her out.
So today we are grateful for the following: our wonderful team of friends and their gifts of time, food and comfort, spiritual guidance, blessings from my brother Scott and sister Debra when we said we might get married, hot water that ran down Lee's back and felt soooo good. As a witness to the shower I saw great pleasure in such a simple act...for the care received while in the hospital, for all the emails and phone calls, for oxygen and air we breathe...and for the sleep we plan to get tonight.
Not sure what day Brenda called Lee while she was in the hospital Brenda clearly remembers Lee saying to her on the phone “It will be a letting go but not a tearing away.”
March 5- Lee went in for Monday's blood test and an abdomen ultrasound. She was scheduled for a mammogram Wednesday March 7 and was on a list for an MRI, thyroid test, and pancreas. They wanted to know the source then they would know how to treat it. In the meantime Lee is getting more winded all of the time .
March 6- our lawyer risked life and limb in the aftermath of a snow storm to bring us new wills for signing. Everything is in order. Lee makes it clear to me and everyone else that she does not want to go in for any more tests period. She saw the writing on the wall. She chose quality over quantity. A suggestion was made to go into palliative and get the tests done and come home Lee said No. My med notebook says- used mask and nebulizer at 11pm and did a lot of coughing. Moved to chair for comfort.
I think its Tuesday. I slept a couple hours last night and woke up at 1:30. I slept in Bills room. When I realized I was awake and there was no way I'd fall sleep again I crawled back in bed with Lee. I rubbed her back and asked her to follow my breathing to slow her 8 to my 1 breathe sounds down. She is such a good listener and she did exactly what she was told!
I am seriously leaning towards cancelling her Regina trip Wednesday. It was so hard for her to walk to the bathroom for a shower last night. She uses a commode at her bedside now all the time. The changes are rapid. I will talk to he doctor today He did not phone yesterday with the blood test results. I am not supposed to give her that blood shot in her belly until I hear from him. Maybe we can even forgo that. The respirologist told us they have morphine that go into the nebulizer and she could breathe that directly into her lungs. The down side is it will make her sleepy. We may be able to get the palliative nurse here quicker to advise.
So its time to circle the wagons and come and hear what Lee has to say to you and for you to say what you need to her. We trust things and events which just flow now. Sasha now has $$ to fly home She is just tying up loose ends. James is desperately trying to get her sisters home. I know that when she has said what she needs to to those people and all of you she will know when its time to let go.
The biggest blessing is she still is not in any pain. If I keep a soft level slow voice she will listen and follow my lead (just like when we dance) You will know what to do and let's just let it all unfold organically. Meegan Linklater came yesterday and Lee said "tell me stories" That’s what she wants to hear She want to laugh. Meegan told her about the time Bert, Meegan and Lee were riding and they all had to adjust fluid levels. Lee parked Quincey in the ditch so she could more easily climb aboard. She did it so deftly that she propelled herself not only up onto the horse but completely over the other side. She quickly bounced back up came and around Quincey and climbed back on and off everyone went. None of the 3 made any comments in the moment They just proceeded on the ride A couple days later Bert and Meegan were driving into the city to work and meegan started to laugh and said " Did you see what happened to Lee?" They had a good laugh and her telling that story left yesterday was so liberating for Lee.
I think the official marriage idea is off the table because of logistics in getting both of us to get a license but I could see a blessing ceremony with all of you surrounding us. Once again I trust that will happen if its meant to be. Maybe Lee can attempt to marry us even if its unconventional. hahah
I am going to search for a locate and set up the walkie talkies system we used in the barn and house so I can ask the workers in house "please bring us...."
I continue to have moments in the darkest of hours but I simply turn my terror into grateful thoughts that I have all of you around me and I have had the most amazing 20 years of my life with a one of a kind woman in Lee. Will see you when we see you and make every visit something you can live with as it may be your last. She will tell us when she is too tired and she will drop off to sleep.
xoDenise
Wednesday March 7 – Had a shower this morning and loved every minute of it. We posed for pictures in our bed! Fun! Got a new concentrator machine from Prairie Oxygen as the first one couldn’t keep up to Lee’s needs. Her O2 level would drop down too much. So we kept her on the portable until things improved. Palliative nursing was started and new pill regime set up and Iris Horne physiotherapist put home care aids in place like pressure point mattress pad, transfer belt, wheel chair and much more. Jan Cibart an old friend made things so much easier by listening to us and making a plan to make things happen ‘our way’. Talked to Dr. Duffy who was still after us to do more tests. Jan listened as I explained to him on the phone that Lee did not want to do any tests. I placed the phone at Lee’s ear and breathless she explained her thinking and feelings to him. Now he got the point. Things were clarified for Jan and she started the ball rolling.
Supportive care THIS IS WHAT WE WANT!!!
When treatments offer little chance for a cure, your doctor may recommend you avoid harsh treatments and opt for supportive care instead. If you're receiving supportive care, your doctor may treat signs and symptoms to make you feel more comfortable, but you won't receive treatment aimed at stopping your cancer. Supportive care, which is also called palliative care, allows you to make the most of your life without enduring treatment side effects that can negatively affect your quality of life.
In one study, people with advanced non-small cell lung cancer who began receiving supportive care soon after their diagnosis lived longer than those who continued with treatments, such as chemotherapy and radiation. Those receiving supportive care reported improved mood and quality of life. They survived, on average, almost three months longer than did those receiving standard care.
New drugs new schedule.
March 8- Uses nebulizer now. Makes her heart race. 135-150 beats per minute. Uses commode at bedside. I use a wheel chair to get her from the bed to the toilet and then onto a shower bench. LOVES the HOT water cascading down her body. I am overcome with a combination of sadness and tenderness as I have never known before. She still says she has NO pain. Just shortness of breathe. Had a very bad coughing spell when Jan was here and Jan assured her “we get this under control and it will never get worse and never happen again.” This is exactly what we needed to hear. Got rid of all her unnecessary pills like calcium, prometrium and her blood pressure meds.
Jan the nurse visited about 1. After some discussion with Lee and me we looked at all possible scenarios and the end result is Lee will not go to the city for any further tests come hell or high water. She has made it perfectly clear. Once Jan realized this and it was clarified she talked to a dr who ordered steroids. The good thing is that she will feel much better. Long term use may include a puffy face and weight gain Who cares? This drug should relieve any swollen lymph nodes and swelling around her lungs. We are buying comfort and a bit more quality time. Then we let Lee's body do the talking and we support that. This should give her a nice weekend with her sisters and my kids and we could go ahead and have the blessing sometimes Saturday. Lee should be in pretty good shape at that time of day. She is getting a saskapole to help get her out of bed. I told her if she felt a lot better we could pole dance. They also sent up a real Aussie sheepskin and a cocoon to sit in. It’s a kind of quilt that wraps around a person like a papoose. We have been well taken care of.
We get the drugs later today and within 12 hours Lee should feel a difference. We could then cut back a bit on the morphine and she might not be as 'loopy'. You will never believe what she said to me today! "I would love a rum and coke!!"
Never had she told me that before. With shallow breathing and lots of heaving she explained when she met me I had told I had been involved with an alcoholic and never again. She took that seriously not that she was or is one. She just never drank alcohol because of that! I learn something new every day.
March 9- not talking very well. The morphine pills are affecting her so she can’t get words out. I reassured her and she understood me. I remind her the kids will be here soon and sisters Lynda and Louise arrive Saturday from the Dominican.
Well the grown man neighbor who is an airplane pilot for air Canada just got back from Cuba with a 26 of Morgan and a 6 pack of pepsi. It is so nice to see a grown man be real and he was not afraid to cry. The son of Nelson Warren our good friend stopped by last night and he cried a lot and Lee told him Real men DO cry and its very OK . He also told Lee his wife and he were expecting their second baby in November. Life goes on doesn't if and believe it or not that gives us peace.
Sasha and Claire arrive around 6 am and come into see Lee then go to bed.
March 10- We made it through the night .I am so relieved. I spoke to Mary and Iris last night about the fear of Lee slipping away before the rest of the family came. Sasha and Claire arrived about 6 am. Marisa will try and come on the bus tonight. It was good for me to see Claire and Sasha visit with Lee. Lee told Claire "You have learned a lot from your Gramma Lee and Gramma Tattoo and you have learned a lot in Winnipeg Now you have to put it all together."
See you all soon....Now we wait for Linda and Louise I except about 11 or so.
I simply trust this day will unfold like it was meant to be. The gift of your presence and blessing on us will be an awesome experience for us and it will likely bring peace to Lee in a profound way.
Additional message to Marj Kent ____Did we tell you the story about Lee going riding with Claire. Claire was 5 (she is now 16 1/2) and following behind Lee on Shortey. From behind Lee heard Claire say "Gramma when you die I get the farm but I don't want the geese!" That has been a favorite story of ours over the years.
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Friends and family gathered to witness Lee and I being blessed in a ceremony conducted by Marjorie Kent. Right before it started she said to me “I have written vows for you!” I was surprised because I thought the marriage idea was kyboshed because we needed a license. She said she would do the whole thing and we just wouldn’t give the province any paperwork. It was a beautiful ceremony. Lee rallied and spoke from the heart. Heather phoned Deborah in Manitoba and she sang us her song Lee’s favorite Nothing Like the Freedom. Cake and socializing afterwards. Watched Claire ride Spinner for Lee. Lee very worn out and back to bed.
E mail to Deborah Romeyn
Ohhhhh It was so beautiful. We all heard it clearly. I will write more later
about the afternoon event.
We experienced at all things a total power outage in the Lumsden. Craven
and Regina Beach areas starting at about 5 ish. That is why I didn't
respond sooner. The computer was out! Apparently a transformer caught fire
and it could be seen for miles! At the top of the hill in the Qu appelle
valley near Lumsden. I have no idea at this point how it all started but
part of me believes Lee could easily have had something to do with it. My
Circle the Wagons core group of supporters and family rallied to analyze the
situation, calculate how much oxygen we had, when we would run out, called
the supplier, Lee's nephew ran into Regina to pick up 2 100 pound tanks that
each last 12 hours. The 'guys' dragged out our generator that we take with
us when we camp on the trail and got that all prepared in case we needed it.
Everything came together quickly. I ended the evening talking quietly to my
resident Anne. She used to be an RN and still has compassion that flows from
her daily. She is a rock and although she will not remember details of what
is happening she will be present with peace for Lee.
We talked about the old days when the power went out and you threw another
log on the fire. We sat in candle light and had the most wonderful time.
While this was going on Lee removed her own purple western shirt so when I
saw her next he lovely downsized boobs were perking up. She is producing so
much heat with a normal 02 reading around 92 and pulse around 115 (its was
between 125 and 138 all week all the time) I got a flashlight and settled in
beside Lee in the dark with moon light and my hand on her back. One of the
great gifts of the power outage was absolute silence. No furnace noises. No
concentrator. I could hear Lee's quiet breathing and I fell asleep.
The power came back on about 2:25. I got up, checked and turned all the
lights off and went downstairs to flip the switch that would get out pump
for well water going and now I write this note as I remain awake.
I am going back to bed to be close to Lee. I will keep you posted. I am
surrounded by loving people like you and I am forever grateful When I next
come to Winnipeg I want to find a way to meet you and tell you in person
what an impact your willingness to give us the gift of your song. It took me
back the early 90's when Lee was 'coming after me'. I introduced her to all
of my women's music and the song you performed was her favorite. A couple
days ago when I asked her what music she wanted at her service of
remembrance she told me about your song. I put the word out to find the
source and through Bev dear friend we found you. We hadn't listened to it in
literally years. We just passed 20 years February 28.
I will keep you posted . I will email our Circle the Wagons core support
group and tell them when Lee passes. I have never done this before so I
don't know when she will take her last breathe. I am totally up to date with
her and I found myself wishing for her passing in silence. It was soo
beautiful. What I do know is we will wash her body and lay her to rest in a
pine coffin that I built for the prairie Lily Funeral Coop and Mary our dear
friend who lives in our other home on this land. I will ask the neighbor men
to help carry her out (they want to do SOMETHING) to Nelson's horse trailer
and she will be transported to a crematorium. A service will be held in the
Lumsden United church 'when the grass is green'. We will have a trail ride
with teamsters giving rides to non riders and we will choose a trail so we
can best appreciate the valley and end up at the church on time.
March 11- Family time. Lazy day. Noticing a downward slide Is this really happening?
Monday March 12- started injectable morphine and midazapine for restlessness. Lee received her first shots of morphine for chest discomfort relief and a drug to settle restlessness through needles placed under her skin in each of her upper arms. I knew we had made another big step and I started to lose Lee as I had known her.
I called Lorna the nurse at 766 7200 in the night and she said "they" would come out this am, put in a butterfly, catheter whatever Lee needs. Her sisters will stop at superstore and bring whatever is ordered when I am given the word to do that.
Lee was agitated every hour so I gave her loraz more often and Leona told me to crush a 5mg morp pill, make a paste and give it to her. She has been sleeping soundly
Oh I woke up at 2:44 and discovered her sitting up ready to drop leg legs down off the bed between the foot post and the metal side rail! . I said What the hell are you doing? I have to pee. The commode was in the bathroom. I said WAIT if you move you'll end up ass on the floor and I won't be able to help you at all Listen to me dammit! She said OK! I slid her onto the commode after I ran and got it. I leaned her over a pillow and onto the bed for support and wondered what am I going to do now? How am I going to get her back to bed? Ah hah! My daughter the body builder! I woke her up and she put her arms around Lee pulled her up swung her closer to the right position and we got her positioned . Sasha made a final adjustment by climbing on the bed placing her feet in her arm pits reaching down and pulling her up I guess that’s what draw sheets are for?!
Back in bed I said to Lee "You told me you wanted to die in our bed not on the floor" She cracked a tiny smile and nodded in agreement. I said I love you again because I didn't want the last statement to be the last words she hears! Me giving her shit! Jan if you talk to Leona you can decide what you want to do and I simply trust all will work out as Lee has planned......
Surprisingly enough I slept well in between episodes of pill giving. Iris is here all day. Louise and Linda will stay overnight tonight and Sasha will go back to Winnipeg later.
more when I know
Lee’s volunteers came here for a potluck lunch They did not go in and see Lee as it would have been overwhelming on both sides.
Dear Marj,
We made it through the night .I am so relieved. I spoke to Mary and Iris last night about my fear of Lee slipping away before the rest of the family came. My fear was how could console my kids when I expect I will be inconsolable myself?How would I find the strength?
Sasha and Claire arrived about midnight. Marisa will try and come on the bus tonight. It was good for me to see Claire and Sasha visit with Lee. Lee told Claire "You have learned a lot from your Gramma Lee and Gramma Tattoo and you have learned a lot in Winnipeg Now you have to put it all together."
See you all soon....Now we wait for Linda and Louise I expect about 11 or so.
Did we tell you the story about Lee going riding with Claire. Claire was 5 (she is now 16 1/2) and following behind Lee on Shortey. From behind Lee heard Claire say "Gramma when you die I get the farm but I don't want the geese!" That has been a favorite story of ours over the years.
I simply trust this day will unfold like it was meant to be. The gift of your blessing on us surrounded by family and friends will be an awesome experience for us and it will likely bring peace to Lee in a profound way.
xoxoDenise
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To Trish- she may not last the day.
Take hwy 11 to the #54 corner Take 54 north towards Regina Beach 9.2 km or 6 miles Turn west left and go about 1/2 mile We are on the left side. By all means come anyways no matter what Call if lost
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Lee now has 2 needles in her arm one in each so I can give her morphine as needed and a calmer downer. Her sisters are here which helps immensely
Thanks for thinking of us. I heard you called today
xoDenise
March 13- Lee has always done things her own way .She was crowding me out of bed a little so in order to get a more comfortable sleep I dragged in a single mattress and placed it on the floor on the left side of the bed leaving about 2 feet of walk space at the edge of the bed. I laid down at about 9 and at 10 I was awakened by a tremendous thunk. Lee had somehow crawled to my edge of the bed and fallen down onto the floor. I was in shock to say the least. When I took a closer look she was kneeling on the floor and leaning onto the floor mattress holding her head up with her hand. The catheter hose stretched from her up and across the bed and down the other side. Thank goodness it didn't pull out.I rallied the troops. Linda, Mary and Iris and together we hatched a plan to get her onto the floor mattress and leave her there. We got the night table moved away and jammed the mattress up to the wall and over to the side of the bed. Put in the rail on the left side. Now she could only crawl out the bottom.
Maybe she didn't want to die in our bed after all! Maybe she still felt the urge to pee. The catheter is a learned thing. You still need to relax to let the pee flow. So there she remained for the rest of the night. I gave her her drugs when she needed them and she had her eyes open this am and was able to hear us but not talk words. I was behind on the suggested calmer down drug 2 hours when it can be given every 1/2 hour. Now she is back to sleep. I had her finger in Iris's oxygen reader and several times in the night it just stopped. The confusing part for me is that Lee's chest still rose and fell. Would her heart have stopped and then restated? Can you breathe with no heart function? A mystery.
Will lie in bed looking down at her surrounded by Linda and Mary and Buddy. Jan our dear nurse will be here this morning. Will keep you posted.
Now this is a real Lee story and its too bad she won't hear about it.
Jan the nurse said 2-3 days but knowing Lee she most likely will continue to surprise us in more than one way like falling out of MY side of the bed last night All is well Have her on a mattress on floor now where she will stay put.
March 14- I feel like we are running a marathon and we are at the hump stage- the hardest stage. Lee's breathing has its ups and downs but overall remains relatively quiet. I managed to wedge myself in between our queen bed frame and her body on the single mattress on the floor. From this position I was able to access the Ziploc bags of the 2 drugs by putting my hand up onto our big mattress. I could take each syringe and reach across Lee and connect them to the ports and push the drugs in one of each arm. Knowing that I could manage that I was able to fall asleep several times the last time for 2 hours. I feel quite well now.
I must admit I do not at this time want to 'do' another night. I am at the hump. I think Lee is too. I have to gain strength now and she needs to let go. What a strange thought for me. Although all of us support people agree this is the best- to hope for the end soon- its is sooooo hard to think I want her death. I don't! I want her to live another 20 years. I know that will never happen. It's just so damned hard.
I also took the phone to bed and I reached for it and called the palliative phone line at around 5 or so I think. I am not recording as much as I have been There is only so much I can do when horizontal. She flails her arms, waves them up and over her head, back down, one then the other. Reported the activity and got some altered directions for giving the drugs. That nurse will talk to Jan and they may up her dosage. Last week she was not in any pain. Is she in any now? How do we tell? I spent a lot of time gently talking to her about pastures, green pastures so that could be a reference to the Lord is My Shepherd. I told her Quincy, Shorty and Jazz were waiting at the pasture gate. I also told her Christine and her Mom and Murray were waiting. I said we would come later but she needs to go first Its her turn. She indicated she heard me by making a noise I am reading as 'agreeing' Her eyes when open look into the distance and they have lost their light. Lee is in there but its not the same Lee we have known. All we want is relief now Relief for Lee and relief for us.
Dying is hard work. I will be glad when its over. Perhaps she is not ready. Who knows?
Friends gather around Lee late afternoon early evening. Lee’s breathing is hard. Nelson and Margaret want to take me away for a short while to the Beach bar to distract me. Back home at 8 Lee is VERY stressed feverish. Talk to Jan. Use a Tylenol suppository. Never did that before. Amazing what one can do when out to task! We washed her down with cold water. Fever subsided and she calmed down and breathing eased. Iris provided a gadget that read her )2 levels and pulse. Her heart raced between 135 and 150 some for a long time….days. How can she last? I crawl into bed with her and wedge myself between our queen bed and the single on the floor. I push my right hand under her neck and it comes out the other side to cradle her head. From this position I can shoot a syringe into both arms. I grab a loaded one from the left on the top of the bed, flip off the rubber stopper, screw it into the right port and push the drug in. I toss the empties. In the morning it looks like a drug den. I talk to Lee my lips against her ears . I am unaware of anyone else in the room yet it is filled with friends and prayers. I tell Lee stories about letting go. Go ahead and ride through the pasture gate and look for Quincey and Jazz and we will come later. Lots of pasture references. Earlier in the day Dan Cooper read Psalm 23 all about green pastures…
At some point I am aware that people are leaving. Lee’s fever seems to have broken and she is quieter.
Email to friends Judy and Roberta
I am getting tons of support and it is gentle and kind and exactly what I need The night time is the worst for me. That’s when I easily feel sorry for myself and feel terror. It is becoming easier as I give myself a guess of 2 minutes of sorry thinking then I think grateful thoughts. I thank gawd she is no pain, that we are totally up to date, that we have such remarkable friends..........and more. When I am grateful I cannot be down in the dumps.
The act of telling you how I feel is cathartic and therapeutic. I will pull all of my sent messages together into a complete diary and share it with those who want to read it later. Did I tell you that she will be cremated in a pine box I built? Made one for a friend and she is giving it back to me. Horse trailer is connected to the truck and she will ride her last ride ride to the crematorium in that. I even took the lid to the box into the trailer and dry fitted it. Wouldn't that be a site if the neighbor men carried her to the trailer and then we decided oopps doesn't fit?!! Dealing with all of these practical things in advance allows me to simply feel the feelings in the moment. Personally as Lee embraced Christianity I have always made it known I rejected Christianity as a practice and have leaned towards Zen Buddhism except I can kill animals if I have/want to- to eat (raise our own food) or end their suffering life. Being in the moment is where I like to be....
Judy I will come and visit you and Roberta. I wish it had been the both of us and a visit in the fall to Ontario and the blaze of colors........
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Message to sister Debra- I can't see her lasting the night. Heart beating 158 and won't stop went down to 38 for a short while back up again How can this be?!
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We have circled the wagons with Nelson, Margaret, Mary and Iris. Things are going down hill. Many more signs, Heart racing at 158 for lengthy periods of time then dropping to about 38 back up again. Pooling of blood in knees and extremities.
we are OK here as is. Just wanted to let you know....
People leave and Louise and I get ready for bed. I talked to niece Erin a nurse on the phone and get some signs of impending death. At 11:15 I notice some changes. I call Louise and watch Lee take her last breathe at 11:30pm. It is so quiet. So peaceful We cannot believe it We are stunned. I call Jan and she came over immediately and she removes the catheter and needles. We dress her in her western jeans and favorite value village shirt. I go to bed at about 1:30 looking down at Lee on the floor mattress. I have no problem sleeping . I cannot believe what just happened. I wake in the morning to find both dogs pasted up against Lee. They must have slept there all night.
March 15- today is Mary’s 64th birthday. We bring the pine box in and Martha returns the lid. She painted a beautiful design on the lid during the night. Iris, Louise and I use some draw clothes to lift Lee up and into the box. I kiss her cold body , touch her cold skin and I cannot believe she is gone.
Dan, Barry, Nelson and George our neighbors carry Lee into the horse trailer and we deliver her to Paragon. We were asked to leave her at the ‘office’ and they would take her to the crematorium later. If we were to take her to the crematorium (and therefore save more money) ‘she’ meaning Lee in the pine box would be left alone. I wondered well what’s the problem with that? But kept my mouth shut.
A body must be identified so I unscrewed the 2 screws holding the lid on and opened it. Trevor looked at her driver’s license photo and he announced “Yes this is Lee Anne Mary Tennyson.” Who the hell else did he think I would have in there?! It’s his job of course to make sure he follows the rules set before him. I took a handful of screws from my pocket and ran them into the box. There. Done. We traipsed around the building from the back alley to the front and entered an office ‘to conduct business’.
Mary had offered to scout out the options and start a file for us at Paragon the week before. I did not want to take time away from Lee by going to the city to make these necessary arrangements. I am so glad she did. I was presented what looked like to me a Chinese food take out menu. Option A might be chicken balls, fried rice, chicken chow mien. Option B might have shrimp in it therefore be more expensive. We had provided the pine box, delivered her and so we saved hundreds of dollars. Total bill will come to less than $1600. We were surrounded by many urns of various sizes and designs including a $345 one that slightly resembled a grain elevator made from popsicle sticks.
I will pick up her ashes early next week and store them in her saddle bags. Nelson and I stopped at the Valley restaurant for lunch and I realize that life goes on as I tell a friend Pip the news She had not heard yet.
March 16- I finalize Lee’s obit and get it into the Leader Post for publication Saturday. I run it by Lynda, Louise and Debra for their approval.
March 17- a day for my women friends. People come all day long and we talk and laugh and cry and tell stories. Lee's sisters added more to the rum and
coke story. I told the others at the table the story as I knew it- Lee
requesting a rum and coke and me never hearing that she liked that ever. The
women said for the past how many years when she slept over at their
apartment Monday through Thursday nights Lee had a rum and coke EVERY
NIGHT!! Just a small one and she nursed it all evening long! Now this is the
hard part- I don't have her here to share the rest of the story!!
March 18- I drive to Wynyard today to visit with cousin Andrea who will take a stack of photos and a flash drive and make an 8 minutes tribute to her. It will be shown at her service on March 31. I stop in and visit Peter and Sandy Foster on the way home- great visit.
March 19- Today Anne and I drove to Regina to do a lot of errands. First we dropped off the saskapole and wheel chair and air pressure relief mattress at Sask Abilities. Then we picked Lee’s ashes up and paid the bill. $1700 and change. Over to Cowtown to get dog Food. United church offices to drop off a death certificate. Not sure what benefits I might be entitled to. Dropped off a bath bench wrong size. Went to Cooperators and got paperwork for insurance. Stopped at SGI and got all license plates and vehicles in my name. Byt this time we were hungry so stopped at DG for a great grilled chicken sandwich. Superstore for groceries then home. Did I miss anything?! Tuesday I go in and get the windshield replaced after I talk to Marj Kent at 10 with Lynda and Louise about the March 31 service.
Tuesday March 20- Did a lot of errands today . Was able to do some one stop shopping today. The federal building in the old Galleria handled the CPP death paperwork, cpp application for a portion of Lee’s benefits (60% of her monthly CPP or $2500 max). Te glitch today was I had to prove we had a common law relationship I needed paperwork that said we were entangled. I got it from the secretary at Dirk’s office- our lawyer. She got into land titles and found the original documents from back in October 1994 when we bought the farm. So that’s done. Over at the ICS building on 1st Avenue I used to buy topographical maps for horseback riding there! In addition to that you can get vital statistics paperwork, death certificates ($25) and more I changed our corporation papers (free) and when I get the official death certificate I take it back and get the land title changed.
I talked to my doctor who was alarmed the obit said she died of lung cancer. She in fact died from metastatic adenocarcinoma. I knew that. I just thought it was lung cancer. The primary source came from elsewhere. Without further tests the guess is pancreas. Who the hell cares?
Wednesday March 21- Anne and I did some errands today and spent some time in the garage sorting books. Kevin Murcell was here to have me sign papers for Wawanesa insurance. I knew I would get $25,000 life insurance. What I FORGOT about was the fact we used to have a 10 year term insurance for $100,000 that ran out in 2009 I believe but then was converted to another 10 year term. I remembered the term ran out but I forgot it was still in place for the next 10 years. So I get a bonus of $100,000. I thought he was kidding me but he says it’s true. Cooperators will give me $100,000 too and Thursday I find out what the United Church has planned for me. I cannot believe this I would give every cent back and more to have Lee here.
Thursday- Met with Marj Kent, Lynda and Louise about Lee’s service. Great meeting. Lee had met with Marj in the hospital and they discussed her service. Lee asked for a short service with communion and a sermon. Well that won’t happen. She will get the communion and sermon and it will be longer probably an hour for sure. It will be a lovely tribute to her. Things fell into place. Everyone got their needs met and Marj made it all so easy. There is a tremendous amount of work that is going into this and she is a detail person. This is good. I am dropping off a case of toilet paper and Kleenex as a bonus contribution for the day.
So the plan is that the family will meet in the basement of the church and troop up all together.
