Quiet Love: … eyes to see and words to tell the truths that are most true. by Patricia A. Bow & Eric C. Bow (http://www.lulu.com/ca/en/shop/patricia-a-bow/quiet-loveeyes-to-see-and-words-to-tell-the-truths-that-are-most-true/paperback/product-23110534.html) Pages 203 to 209 :
Thursday December 1 2016 Advent
Another so – so night. Woke about 3 am with headache took Tylenol, waited to about 6 am for easing.
Now, at about 10 am, I am still dead tired and have a trace of headache. wish I knew why the headaches. also a slight trace of nausea. Took Ginger tea – little help. Dread the general horribleness that might come.
Phoned Dr Eskander -no word yet on oncologist appointment.
Got a reply from Shetland Spindrift people. Think I can do this. Had planned to go to the new Nougat with Dani and Bette today but was not up to it.
She had a stroke and was back in GRH. She tried to keep up her journal but it is barely readable. This is the best I can get.
Sat Dec 4 (I think)
Back in GRH felt sickish found myself on BR floor me going to. (ER) in Ambulance – landed on Floor 6 surgery, I have been here for 2 days. My handwriting is terrible can’t see much of letters without eyeglasses on — no idea what’s going on Stroke?
The rest is me filling in for her a month after she passed away:
Friday December 2 2016 to Sunday December 4 2016
In the morning after breakfast Pat felt nausious and dizzy while getting dressed. I told her to go to the bathroom. She got there and didn’t know what to do with the door. I told her to open it. Then she got to the toilet and again asked what to do. I told her to lift the lid. That’s when she colapsed on to the floor. I got her out to the landing. Phoned James. He told me to phone 911 and he rushed over. When Pat heard that an ambulance was on the way she told me to cancel it. I told her they were on the way and I couldn’t cancel. 911 arrived at the same time as James. Firemen examined her then the ambulance came and the medics took over. They determined she had had a stroke. At the hospital we learned that while she was in a ward on the 8th floor the previous week she “might” have come in contact with a super bug. She was put in isolation. Spent the whole weekend in GRH . Various tests were done. Visitors had to wear gloves and gown (Nora wouldn’t and stayed in the hall) which Vivi did and came in the room to see and kiss her grandmother. They kept her in for tests which they couldn’t do until Monday morning.
Monday December 5 2016
After the CT Scan in the early morning Pat was allowed to go home. They found scarring from many small silent strokes and of course the stroke on Thursday. The strokes are attributable to the Pancreatic cancer causing blood clots.
When home in the late morning. We had a busy day finishing up some things for Christmas. Pat seemed fine and had returned to normal though she had trouble reading and writing. Signed all our Christmas cards though.
In the evening she wanted to get down the small slow cooker and timer we had promised to give to Erin for cooking steel cut oats over night. It was in the cabinet over the refrigerator. She began pushing a chair over to the fridge. There was no way I was going to let her get up on a chair; so I climbed up to get the cooker while she dried dishes by the sink.
I noticed her stagger; got down quickly as possible; just in time to catch her but I was off balance and we both ended up on the floor – her on top of me.
She was incoherent but wouldn’t let me phone 911. I phoned James and Erin and when they got there we all tried to convince her to allow us to phone an ambulance. She firmly refused scrawling on a pad “No Ambulance.”
She was insisting it was not a stroke though her left side was paralyzed and she was drooling from the left side of her mouth and her writing was barely legible when she could find the words.
Erin, James and I talked it over, asking what the hospital could do for her; she was already taking the strongest blood thinner available, it was late and she had an appointment with Dr. Eskander Wednesday early Wednesday morning. [We now know this was a mistake because the stroke could in the early stages have been treated to speed recover later].
Tuesday December 6 2016
Pat spent all day in bed. In the morning she fell trying to get out of bed herself to go to the bathroom. I was downstairs making breakfast.
Wednesday December 7 2016
Early Wednesday James came over to help get Pat to Dr. Eskander’s office. Pat insisted I give her a bath; got her in tube, got in with her and washed her down. Got her out dried and dressed and downstairs to the living room. Bruised her in several places doing it. Her legs got wedged in the tub and also showed bruising. Got her to Dr. Eskander. He took one look at her and told us we should have called 911 Monday night. Asked us if we wanted an ambulance now. We declined and got her to GRH ourselves – another mistake you get through ER a lot sooner if an ambulance brings you in.
December 7th to 14th
The next week was full of tests, visits from therapists and the beginning of some therapy. Conclusions of the examinations, test, consultations and therapist visits were
• the cancers pancreatic and liver were inoperable;
• can’t use either radiation or chemo therapy because the strokes had left her too weak and either would rush her death and be very painful – the oncologist concurred;
• there could be some benefit from intensive stroke therapy in Freeport but by the time they got results she would be too week from the cancer to enjoy them and also wouldn’t have much time left.
Pat wanted to die at home though she would have liked some intensive to try and get some of her independence and words back, but there was the promise of home visits by the therapists.
After discussions between us and the palliative care doctor we chose some less intensive stroke therapy at home and also signed a “no heroic measures” document. Her siblings concurred. We had opted for home care – me being the primary care giver.
CCAS had an hospital bed completely equipped, a wheel chair and a bed desk delivered to our home and set up schedules for home visits by a nurse, speech therapist and occupational therapist and three visits a day by person service workers.
Pat was brought home by ambulance on December 14 2016
December 14th 2016 to January 5th 2017
Things gradually improved at home for a while. We got into a routine and the therapists trained me. I had Pat do the exercises and I learned to use the bed to help lift her. She sat in the wheel chair in front of the living room TV to eat lunch and sometimes supper. I even got her onto the commode. Also she seemed to be gaining some strength back as a result of her exercises. We had an enjoyable Christmas Eve with her sisters Deanna and Bette. They brought over a feast and Pat was actually able to eat some and seemed quite happy and comfortable. Thank you Dani and Bette that more than made up for an unpleasant Christmas Day.
Christmas Day was not so good. Pat was never good with a large group of people – she reacts best to at most 3 to 5 people and she does not like being the centre of attention or people trying to bond with her. Also Christmas day she was feeling tired from the night before. And by Christmas, after a few headaches (I still think they were silent strokes) she had lost more of her words. Well on Christmas day, James, Erin, the Granddaughters, Michael and Rosemarie all came over bringing presents and to open our presents to them. Pat was in her wheel chair and the adults trying to show sympathy sat real close to Pat touching her hands at times. It was a bad day for Pat especially as she never did like being touched by anybody but her nearest and dearest – Vivian, Nora and me, and hugs from siblings and James and Erin. I could see her flinch and especially the tears in her eyes – she was crying on Christmas Day. It made me very sad as this was likely her last Christmas and I so wanted it to go well. Pat please forgive me!
For the next two weeks we settled into a routine of me feeding her oatmeal for breakfast and pureed meals for lunch and dinner and thickened water and juices as needed. I gave her her medications including her Fragmin shots and helped her to the commode. Also cleaned and changed her when we didn’t make it to the commode. Pat hated strangers looking after her bathroom needs and actually preferred me to ANYBODY else. James came every night to read her to sleep. Deanna and Erin both came regularly to read to Pat. Reading was a passion of Pat’s and I’m sure she loved this – especially as the silent strokes left her very little sight. Thank you James, Erin and Deanna. Pat was in very little pain – the headaches were the worse. Tylenol regular every 4 hours were all she needed. God certainly answered her prayer to spare her pain.
Must tell this little scare I had:
One morning I came down and didn’t see her in her bed. There was this pile of blankets on the floor (including the “poppa” quilt she had made out of my old flannel shirts) but NO Pat. Where was she? I was in quite a state. Then I saw the pile of blankets move. She had had to go early in the morning and had tried to get to the bathroom by herself. She had fallen to the floor and had the sense to pull the quilt and blankets down with her to keep her warm.
The days after New Year, Pat lost her words completely and communicated by grunting and pointing. – to her mouth when she wanted water, to her grown when she needed the commode.
January 5th to 7th 2017
From January 5th to 7th Pat was not responsive to any stimuli at all. We were unsure if she even recognized us or saw anything. Her right arm had lost most of its strength and the left lost all its gains. She needed a stronger pain killer so, the nurse suggested I start the Percocet once a day before bed. Then she lost the ability to swallow and the nurse put in a vein tap for morphine again only once a day before bed and showed me how to use it.
Her sister, Deanna was her last visitor; Dani read to Pat until about 5 that day. the PSW was due at 5:45. When Dani left Pat was still breathing but it sounded laboured. She seemed peaceful. I went up stairs to answer some e-mails then started down to prepare for the PSW’s arrival at 5:45. The phone rang, it was the PSW, she had just gotten off the bus could see #100 Krug and said 99 must be next door. It took me time to explain how we number houses in Canada – she had been here less than two years. Well I had to turn on my porch light and actually go out and get her. Got back about 5:55 and went to wake Pat. I noticed she wasn’t breathing. I took her pulse (skin was still warm) but there was no pulse. The PSW wanted to phone 911 but I stopped her and phoned the CCAS nurse as instructed. The nurse came in less than 30 minutes. She took over and told me to phone the funeral home to come take the body. James Erin and Deanna were here to say their last farewell Impressed with Erin who gave a last kiss and hug (as I had done earlier) James sort of blessed her.
You’d think that was all but then this:
Just when you think it cannot get any worse you have to put down your beloved pet. Pooka spent the last two weeks either on the hospital bed with Pat or sleeping under it. She was okay when we left for Church this morning, January 8, 2017, and after we got home; but, after we got home from making the funeral arrangements she was at the top of the stairs crying in pain. We noticed she couldn’t put any weight on her rear left leg. Took her to emergency services and were told after an x-ray she need orthopedic surgery and her weak bones (she was over 19 years old) would not recover well at all. They recommended we put her down rather than send her to Guelph for the $6,000 surgery. Boy the world stinks just now.