Yet we shall make him run

While we are on the subject of poetry...

Many of you will recognise this.

It's the sampler that mum sewed back in 1970 after becoming fascinated with them. There's a line at the bottom that has always meant a lot to me.

Many years ago I asked my mum where it came from. She told me it was part of a "strange little poem" called To His Coy Mistress. The bulk of the poem amused her but was not something she felt a strong connection to, except for that last line. It's always stuck with me too. I won't generally get philosophical or spiritual-minded on all of you, but I would like to leave that line with you to relate to as you will.

--

One last note. On Saturday night a few family members will be together here in Ottawa to share a moment in Nancy's honour. If you would like to contribute, please take a moment wherever you are around 8:30pm EDT on Saturday night to toast Nancy.

much love

adam

Wednesday April 20th

I am still feeling heartsore and expect that to go on for quite a while - but I was happy to receive a lovely poem from David in my inbox this morning.

He tells me the Queen read it out at her own Mother's funeral ...

You can shed tears that she is gone,
or you can smile because she has lived.

You can close your eyes and pray that she'll come back,
or you can open your eyes and see all she's left.

Your heart can be empty because you can't see her,
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday,
or you can be happy for tomorrow because of yesterday.

You can remember her only that she is gone,
or you can cherish her memory and let it live on.

You can cry and close your mind,
be empty and turn your back.

Or you can do what she'd want:
smile, open your eyes, love and go on.”

A very Quiet Monday ...

It feels so quiet in Ottawa today - when I left hospice yesterday midday I had agreed with Adam that I'd be at the hospice this morning at 8 to be with Nancy for the morning ... and now there is nothing ...

I didn't cheer - I did light a candle and have a glass of wine ... we all do this whichever way we have to, and Nancy knew that I was not one for cheering when feeling sad - so I didn't cheer.

I did kiss her, and I did tell her I love her, and I also told her she is an absolute Superstar and has been in all of this. Seeing her last night - lying in her bed - I wasn't sure how I would handle that, but as with everything else she made it very easy for me. I had a fairly long conversation with her before the funeral home came to pick her up and we all walked her out of May Court.

I will miss Nancy - I believe many of us will. And it will take time for me to get used to her not being around. I will miss the emails and her popping in for tea, to plant something in the garden or to check out what was new around the house.

I hope we have provided what I set out to do - make you all feel part of her last journey. I feel that at times it became very personal but at the same time I wanted you all to know what was happening here in Ottawa as it happened. I know Adam told her about the blog so I do not feel we stepped on her dignity.

I guess there isn't much more to say, the blog has served its purpose and now it is time to heal. Because despite age or illness - Nancy was Nancy, and she was an aunt, a surogate grandmother and a dear dear friend to me and mine, and as we all know - death is very final and it is the living who needs the time to figure out a way to continue without their loved one.

RIP Nancy - with all my love, Birgitte

Goodbye Chumpy

Shortly after 8:00pm this evening Nancy quietly left us. It was painless, quick, and quiet.

So many people have been so wonderful over the past three weeks. I hope to thank you all individually in due time.

Mum was very reticent to dictate or request anything be done after her death, with one exception. She asked that everyone cheer. She wanted us all to raise our arms and cheer for her. She led a wonderful life and is to be congratulated. Please give her a cheer.

Thank you all. I'm sure we'll speak again soon.

Much love
adam

Sunday ...

Adam has said it well - and I too believe that this is no longer about us but about Nancy finishing the journey she has been on since middle March ...

I was with Nancy this morning and there is a big shift in apprerance and behaviour - and there is no doubt we are looking at a short amount of time before she will be gone and we have to continue life without her.

I started this blog initially so that everyone could get a daily update - and I know you all understand that at this point it is hard to give any updates because Nancy is in charge now - she will pass when she's ready. It could be days still and very little will change between now and then. I promise you that even with no or very little information I will still write a little every day - because I know how hard it is to wait for news and wonder what is happening.

Between the boys and myself we will try to be with Nancy as much as possible - I would move into the chair if I could ... but I have to look after my own family too. My heart is sore and tears never far away - I am sure you all know that my love for this remarkable woman is very strong. I give her everything I have when I'm with her and have no doubt she knows she is very loved by all.

B

Next stage

As we have been reminded many times, there are few certainties in this process, but it does appear that mum has moved on to the next stage in her illness. I won't go into the list of symptoms and behaviors but it's clear that she has become the "frail old lady in a hospital bed". This is in marked contrast to her previous condition, which left everyone amazed at her energy and spirit.

We don't have any way of knowing how long this will last, but we all hope that when she's ready she is able to let go easily and quickly. It probably won't be very long now.

Thank you to everyone who has made her final weeks so filled with gratification, happiness, and love. We'll keep you updated when there are changes.

Adam

Saturday, April 16th

I have just come home from the Hospice, having been there since 8.30 this morning.
 

Today was a rollercoaster - and I feel rather drained but will hang in till my little people have gone to bed and Bob can pour me a lovely glass of wine (donated by Jane!)

When I got there this morning Nancy told me that the night had been rough and pain medication had to be administered - she felt fine though and totally with it. 

She was trying to get dressed - seeing me she allowed herself to collapse on the bed and let me help her through all the different stages of getting ready for the day. She was very aware that Mark would come in today and wanted to look her best. I spent a long time with her, making sure her face was pretty and her hair straight.

She then decided that today was the day to try some porridge although this is not her favorite breakfast. Her throat is still very painful and with the porridge being warm and soft we agreed that it might soothe rather than upset her. So I went to make her a lovely breakfast tray full of orange juice, tea, porridge and pretty flowers. She was so happy.

After breakfast we agreed that she should have a little snooze before all the boys would come in and so she curled up and I sat in the chair reading.

Her breathing was strenious and I was aware that she was not that comfortable but thought that she was asleep until she cried out she was in pain and needed help. So I helped her - but even with her own suggestions and my ideas she was still very uncomfortable. Nancy was distressed and for every minute more so. The nurses heard her and came in and we agreed that pain medication was needed. They gave her a shot. 15 minutes later she was still not able to relax and was still in too much pain so I went to get the nurse and asked how much they had given her - I told them whatever the amount it wasn't helping. They then decided that an intravenous line should be put in so that they didn't have to keep poking her with needles. When they had done this she was given another shot of pain meds and a shot of something calming. She right away relaxed and felt so much better. She fell asleep within minutes.

I stayed with her for a long time - only left to bring back the car for Bob. He took me back to hospice right away and by then the boys had arrived.

I explained to them the events of the morning and it is of course upsetting to all of us that she should experience pain at any point on this journey but at least she was helped and saw the benefits of the medications.

I stayed at hospice till 4 this afternoon. I had a good conversation with my volunteer coordinator who reminded me of the many roles I'm playing at the moment and reminded me of ways to look after myself. I enjoyed that conversation and I'm grateful she came by today.

I am not going to lie to you - it was heartbreaking watching Nancy in pain - but I'm so pleased I was there to help her through it. Before I left I went in to tell her about the medications because she is terrified of the morphine - I told her I'd had a chat with the Nurse about the meds and that what they gave her is not morphine but the "first" painkiller on the list - and that if this works for people that is the one they will keep using. Nancy was so happy to hear this - and told me that it was "Heaven" when the pain subsided - she clearly knows now that pain is not something she has to endure and that if she asks it will be given if she needs it.

When I left I told her I'd be back tomorrow to make her breakfast and help her get ready for the day and for the first time since this illness she said "I'd really like that" ... I cannot tell you how happy that makes me. I keep going in, and I keep telling her that this is not a burden, that I actually want to be there - but of course it "hurts" every time she says "you should go now" because I feel I go against her wishes when I then tell her that I am not going to. For her to tell me that she actually wants me there - is a good feeling.

I want to leave you with a sweet story - Shannon, one of my favorite nurses at Hospice, is a big animal person, and she knows that Nancy loves cats. Shannon and some of the other nurses feeds cats in the garden and yesterday they grabbed this orange cat who comes every day and they brought it in to Nancy, for her to have a cuddle. There really is nothing they wouldn't do for Nancy, and she was so happy when she told me the story.

with love,

B 

Maplelawn and Mark

Mum regained a little energy this evening, but she's very annoyed that she never managed to get out of her pajamas the whole day. Unlike some of us, she can't stand the idea of spending the entire day in bed.

But first a note about Maplelawn. Yesterday the NCC installed a plaque dedicated to mum.

It's located below a maple tree with a bench below it. She is rightly proud of having a plaque with her name on it from the Government of Canada. Truth is, mum has left her mark all over this city. The public library she helped to start in Richmond, the Billings Estate that she was instrumental in getting off the ground, countless projects at the city archives, and the hundreds of lives she's touched over the years. The little WREN of no fixed abode has left quite a legacy in this town.

We didn't visit much with mum today. Dad was by this morning and I joined in just before noon. She was clearly very tired and a bit uncomfortable, so we let her rest.

At around 1730h I was working on my computer at home and her name popped up on iChat. She had rallied enough to check her email (21 messages!) and we spoke with her briefly.

After dinner I made my way down to Maycourt to see how she was and wait for Mark. We had a nice little visit and I tried not to tax her too much with talk. At this point I'm happy just to sit with her and listen to the radio.

Mark arrived around 2200h and had a bit of a chat before we headed back home.

It seems likely that mum might be stuck in bed at this point, which will probably distress her a bit. The Maycourt staff are very good about keeping her "cleaned up" so that she feels as good as possible. We'll see what tomorrow brings.

I couldn't think of a title for this post - there's not a lot to say at the moment. We dropped by this morning and mum was semi-sleeping, still in her pajamas. Evidently she couldn't manage to reliably get out of bed this morning. She has various small medical things going on, none of which would sound drastic but the cumulative effect, along with her already weakened state, has her tired out. I poked my head in around noon and she was awake. We talked for a minute and then I left her to rest. She doesn't look like she is in pain, but she's clearly not feeling well.

As I was saying yesterday, it's so hard to know if this is the next decline in her condition or if she will rally again. My guess is the former, but only time will tell. The fact that we've not seen her online or had an email in over 24 hours is a very telling sign.

Mark arrives this evening. We'll check in at Maycourt again after dinner.

Everyone else is healthy and the family continues to pull together and be supportive. Some "friend of Maplelawn" came by this morning to pick up some of mum's books and papers about the garden that she wanted to pass on to them. They brought us a photograph of the plaque in mum's honour that the NCC has just installed in the garden. I'll have some photos of Maplelawn to post tomorrow. Dad says that mum is particularly proud of the fact that the plaque says "Government of Canada." I'm sure it pleases her no end that a "little peasant girl from England" has been officially recognised by the government of the second largest country in the world. :)

Still Tired

I was saying to someone earlier that it's hard to establish any patterns when we are dealing with such short timelines. Mum was very tired today. It's hard to know if this is part of an overall slow down, or if she'll rally again tomorrow. But even when she's tuckered out she always smiles when someone shows up at the door. We continue to take things day by day, try to take full of advantage when mum has energy for visitors, and let her rest peacefully when she's tired.

Tomorrow morning I'm going to stop at the blood donor clinic to make a donation and then go see mum. Mark arrives tomorrow night (Air Canada permitting) and will be here for a couple of days.

The nursing staff are excellent. They are attentive, friendly, and have come to know mum well.

Mum has always hated taking pills. She has to take a lot of them at the moment.

As a treatment for her dry and sore throat, she was given ice cream and a popsicle. I was thinking of faking a little cough, but I don't think it would have worked.

The Maplelawn folks gave her a pot of flowers that could live outside her window and wouldn't require any maintenance.

Thursday April 14th

It's not getting any easier to write these daily updates, seeing Nancy today was ... I'm not sure my vocabulary is big enough for this - because it is not sad, it is not hard but it is certainly not easy seeing her like this either.

I got to the Hospice at around 11.30 and found John and Adam chatting outside residence. I went to see Nancy - knowing I might have to leave again if she was asleep, but I bumped into Christine who was going to see Nancy to let her know that she'd be in to see her tonight and we went in together.

Nancy really felt the need to clean her teeth and I asked if she'd let me bring everything to her instead of her trying to find the strength to go to the washroom. I raised the bed - and she fell against me and just let me sit there holding her till she found enough strength to lean back. Even little things are getting tiring for her.

I left her to sort herself out - dignity is a big thing and one we don't want to let go till we absolutely must so I went and got her fresh iced water. When I got back she was happier for having done what she really wanted to do. I lay next to her for a while chatting - she had been sad this morning and we talked about how this is a battle she cannot win and that would be hard on anyone to accept. She feels teary about this today. Thankfully Christine promised to come back to see her tonight - this I hope will help and give her some peace of mind.

While holding her I returned the phrase "this too shall pass" and she just nodded gently ...

love,

B

Wednesday Afternoon Rally

I don't have any photos of mum sleeping this morning. I arrived around 1300h and she was tired but awake. Within an hour or so she was back to sitting upright, doing her email, chatting with everyone who knocked on the door, reading the newspaper, etc. She was visited by the nurses, Dr Hacker, Christine the therapist, and the foot massagerer.

The doctor did something to mum's nose to try to stop the bleeding which left her sore and stinging temporarily. Later, the massage therapist, wearing tie-die pants and crocs, offered to give her some "Reki up there to help focus the energy channels."

As Mark said, "it's not that it takes all kinds, there just are all kinds." :)

Wednesday April 13th

Today was a lovely day for me - because I got to spend serious quality time with both John and Nancy - individually.

I got to the hospice around 11 and Nancy was fast asleep. She only just opened her eyes a tiny bit and I (again!) removed her glasses which she was sort of trying to hold on to while sleeping :) - I also managed to get a "yes please" when I asked if I could find a thin quilt to put over her.

John then asked if we should go to the river room and have a little chat - it was absolutely wonderful to have that time with him. He told me more of his ideas/plans/hopes for what to do when he soon is on his own, and he has good, solid, healthy ideas. I was overjoyed when he told me that he is thinking of doing a cruise to the UK - maybe with a couple of friends. I told him this would be my happiest news of the day. I also told him that I think he's doing great, grieving at times but also looking into the future, wondering and planning what to do when alone for the first time in many many years. He loves talking about the past and I find his stories interesting and fun - we have great laughs together and also shared a few tears today. John will be ok - because as I said to him, she'll always be there by his side in spirit and he said "that is for sure"!

After about an hour John decided it was time to leave and we went back to Nancy - she was still sound asleep. John said goodbye but she hardly registered it. I finally got to just sit with her ... watching her in her sleep and thinking sweet thoughts about her. She woke after about an hour - thirsty and grateful for some iced water.

She did dress herself again today - but I am wondering for how long she'll be able to do this - because the nurse today said doing this is what really exhausts her. I had a little chat with Nancy about not being silly, that a fall at this stage would be very unfortunate - and she promised me she wouldn't be "stupid".

I told her about John - about his plans, I shared with her how we talk about her as always being there - that John believes she'll continue to be by his side. I also shared with her that in my training there is a lot of time spent on the caregiver - things to look for, signs that the death of a loved one is too traumatic. That one of the things we have to look for is whether the caregiver has future plans - and John has many ... maybe none of them comes true, but he is able to see a future without her, he thinks of how to continue life. This calmed her so much. It makes her incredibly happy when I can tell her about my chats with him. She knows I don't let him get away with "I'm fine" as she says and I promise her I'll continue to "keep at him".

Adam arrived - we had a nice little chat and then I went home.

Nancy was more tired than I've seen before - maybe that is a sign of what to expect over the coming days?

Love,

B

Tiring day

Today was a tiring day for mum. I believe it was the cumulative effect of trying to mentally get a good grasp of all we learned yesterday from Dr Hacker and the fact that she continues to try to remain independent and mobile but the effort is starting to be come unmanageable.

Christine the therapist came by in the morning and had a talk with mum. Christine is very attentive, cheerful, realistic, and knowledgeable about end-of-life issues. Mum always seems to enjoy talking to her.

Birgitte and I went for lunch. We talk frequently during the day but we haven't really had a chance to just sit down and talk to and about each other. We had a very nice lunch on Bank Street. When I got back to Maycourt, mum and dad were in the sunroom. Those two are just so sweet together these days.

We left mum to get some rest. Dad and I went to Lapointe in Bell's Corners for fish and chips.

I dropped by Maycourt again this evening for a short visit. She looked sleepy but comfortable. I hope to talk to her tomorrow about how to best use what energy she has so that she doesn't make herself worse unnecessarily.

Oh... and one more thing...

When Christine was talking to mum a bird came and grabbed a piece of food from the birdfeeder. I suspect it might have been a chickadee. We didn't see any more activity, but it does suggest that the birds know it's there now. Hopefully we'll get some more coming soon.

Tuesday April 12th

Today was different.

I got an email from Nancy early in the morning. Another request to help her understand this illness and the timeline. I tried my best to reassure her but have very little new information to share with her.

She had a shower and then wrote me another email - it was all over the place, very confusing and mixed up - I wasn't sure why and didn't quite realize that the shower had really knocked her out.

I went in to see her at 11.15 - she was asleep and I didn't want to wake her. I sat in the hallway waiting for Christine - the Family therapist. I know her so well - and I wanted to have a chat with her. She finally emerged and I jumped in while she had lunch!

She had a good chat with Nancy this morning - trying to make her understand that Nancy belongs in hospice. That no matter how long we are looking at she belongs there. That she does not need to feel that she's taking up a bed longer than anyone else. Christine reassured her that one of the other patients has been there for 4 months and Christine told me she immidiately saw Nancy relax. I understand Nancy has never asked for anything like this in her life, but it is a great hope of mine that she'll understand soon and accept that this is where she needs to be now and that she is no burden to anyone - at all!

The leukemia is "teasing" us all because it is not playing by the "rules". The doctors have thrown timelines that didn't come to be true, and the white blood counts are showing numbers that are too good to understand - but there is no doubt that what the doctors did do right is diagnose her and put her on palliative care. She is dying and although it is taking longer than expected it is happening. We are just going to have to accept that as with most deaths there is no norm, no timeline, no "right way" and we must find the strength, love and understanding for Nancy - because no matter how hard it is for us to watch from the sideline, Nancy is the one living it, and she is confused as to what to expect and how long to expect it for!

I literally saw her for 3 minutes. I went in and her speech was slurred and she was very groggy. I told her I was going out for lunch with Adam which made her smile and feel happy in that moment. I removed her glasses and made sure she was as comfortable as could be and left her to continue her snoozing.

I want to say I hope she feels better by tomorrow - but I don't know if that is the right thing to say because that would mean she'll be even more confused tomorrow. Poor Nancy, this is not easy!

love,

B

Facial Day

The day started with me and dad stopping by Nicastro's bistro to pick up a cold asparagus salad at mum's request. (Nancy will remember Nicastro's as the place we went to after our flight got cancelled where the power failed as soon as we arrived.)

We arrived at Maycourt to find mum in the middle of her facial.

She felt great and looked great afterwards.

Monday, April 11th

The days keep going by and Nancy is as smiley and grateful as ever.

I went in to see her this morning at 10 - Jane and I had arranged for a facial (her first ever!) at 10.30 and I think it is safe to say Nancy thoroughly enjoyed it. She felt - and looked - amazing afterwards.

John, Adam and I managed to have a little chat in one of the lovely rooms while she was being pampered. It was nice to be able to just sit and talk.

I had yet another chat with yet another nurse today - I didn't learn much that we haven't already been told - but it is confusing for all of us to see Nancy continuing to be her old self, but at the same time noticing that she is getting incredibly exhausted by the tiniest of things. There is a feeling of being in limbo - of not really believing that this could be over real soon, and Nancy continue to ask me every time I go in how long I think it will be. Waiting for the end of life is hard work - it is confusing and upsetting and in between filled with lovely visits and nice experiences.

She told me that today she had to go back to her bed 4 times during her morning rituals. Just to catch her breath. She also told me that there is still no pain but an incredible heaviness that she can't explain any other way. She looks good and still continues to eat - I made another batch of Cucumber Salad which makes her so happy - she continues to comment on how happy she is that she got her appetite back, and she just loves looking forward to dinner.

with love,

B

Bacon Butties, Clean Teeth, and Jane

The morning started with the delivery of a bacon butty, delivered straight from Donna's Express by dad.

I've said it before and I'll say it again - food is not the Brit's greatest contribution to the world.

Mum devoured most of it and then went to brush her teeth to make sure she didn't smell of bacon for Jane.

She started standing and then fairly quickly asked for her chair. Maycourt provided her with this walker/chair so that she could sit down to brush.

After she finished brushing she quickly stood up, moved hand over hand to the bed, and feel into it. She lay exactly as she fell - in a kind of a question mark shaped curl. It didn't look uncomfortable, but it was not a natural looking position. I watched as her energy slowly came back, her eyes opened, and she straightened herself out again. After a few minutes she was back, sitting upright in bed, bright eyed again.

Dad and I took turns lying on the bed beside her. Here's a rare picture of us two together.

And a sweet one of her and dad.

Jane arrived and we had a nice visit all together.

After a little while, Jane and I slipped out and went to Bank Street for a coffee and a chat. It was such a huge treat to have her here. She must be somewhere over Quebec as I write this, on her way back to the UK and all the myriad things that await her return.

When Jane and I got back from coffee, I found mum and dad both snoozing happily.

Field trip

It was a mild morning, so mum bundled up in her coat and we took her outside for a bit. She's been craving this for days.

We walked down to the end of the block.

To Ana's house, which is just on the corner. Only a block away from where mum is. We had a look at her garden, which is just starting to wake up.

Back at Maycourt we stopped at the courtyard where the daffodils are coming up and there are a bunch of other flowers that must be just days away from coming out.

It wore her out a little bit. We sat in the sun room for a while. I gave her and dad a little time alone and then we got her back to her room. She'll have more visitors later today.

Her eyes look a little darker today and the slow down continues, but her cheeriness is unstoppable.

Friday Pictures

Jane was in to visit at least three times today. It's great to have her here.

Friday April 8th

As Adam said - Jane is here now and I took her in this morning to see Nancy at 9.30.

Oh the hugs Nancy gives. So long, so warm and so much love - she really holds you, and makes the effort to stand up when people come in. Luckily I got one too :)

But I wanted to let you know that what I'm seeing is certainly what the nurses has been telling me - Nancy is declining every day - for every time I see her there is a noticable decline. After those two hugs this morning she had to lie on her bed, close her eyes and take a few minutes to catch her breath and find some strength to visit with Jane.

I left them to have a nice visit and when I picked up Jane we agreed, like everyone else has, that Nancy is still "all there" - her mind is sharp, she's as interested and interesting as always but she is losing this battle - a little more every day.

Jane, Anna and I had lunch together in Westboro and I then dropped her off at the hospice again - Adam is there and I'm sure there'll be a little picture or two from the visit between aunty and niece!

Love,

B

A visit from Ana

The woman on the right is Ana, who mum refers to as her "nearly step sister." If I've got the story right, Ana's mother was courted by Mum's dad after he left Nana Mote. They met in Ottawa by the most unlikely and unrelated of chances.






Mum is, as seems customary these days, cheery but losing more mobility. Brushing her teeth wipes her out now she says.

Jane arrived safely last night. She's been in already and we missed her. Shell be coming by the apartment for dinner tonight.

Thursday visit

Another day with mum in great spirits. She continues to lose mobility, but she's as sharp and cheerful as ever.

Jane arrives late tonight.

Wednesday pictures

Mum starting up my new iPad for the first time.

Playing with the bed controls. OK... Maybe "playing" isn't completely accurate. "Operating" the bed controls. If it were me, I'd be running the thing like it was a roller coaster.

Mum and Birgitte in the sun room. Nice and bright, but also very warm. It's hard to keep your eyes open after five minutes in there.

Christine, the message therapist.