Family Portraits

I took these photos of mum and dad when they visited Vancouver last September. A number of people have asked for prints and I've been meaning to post them online for some time. As much as I'd love to run the prints myself and send them out, the truth is that they'd probably get damaged in the mail and it's going to be a lot more reliable to just let you print them yourself. (That way you can print them at whatever size you like, etc).

You can download the high resolution originals from my server.

I'm going to get prints made and buy a frame tonight to put in mum's room.

Mum's desk

Forgive me for getting sentimental for a moment, but mum's desk was something that I always loved to see when I visited. It was always busy and creative, but organised. It wasn't covered in junk and crap like mine always seems to be. The bits and pieces seemed carefully selected from what had been catching her attention or occupying her mind, and there was always a slow evolution going on. Interested and interesting. Of all the parts of my parent's apartment - a home that is so full of original and unique character - mum's desk may be the part I will miss the most.

Two days ago on the couch in the living room...

Hospice Day

Mum is at Maycourt.

She still tries to make sure she gets up and gets dressed every morning. She was surprised by her lack of energy this morning.

A tag-team of palliative doctors came by the apartment to do a full assessment this morning. Then around 1300h we packed up some clothes and a few favourite bits and drove to Maycourt. It was difficult for everyone, but we managed. When we got to Maycourt the staff were everything we'd heard - kind, incredibly attentive, plentiful. It was a hard decision but everyone is comfortable and confident that we've made the best decision.

Hopefully the next few postings will be better.

Hard day

Birgitte has more or less hit the high points. We four are all completely exhausted emotionally by the day's events. Tomorrow will be a busy and tiring one too, I imagine.

Here's Milo explaining the finer points of juice box protocol.

Birgitte has been beyond helpful. We can't describe how grateful we are to her and how fortune we feel to have her experience, knowledge, energy, support, and love.

Tuesday, 29th

Today has been spent trying to figure out why Nancy had no palliative doctor assigned.

I called Hospice at May Court and they have been beyond helpful - they right away told me they would hold a bed for her. This is literally like winning the lottery. She will be going in tomorrow some time. This was not an easy decision - it hardly ever is, as everything becomes very final once Hospice is mentioned.

I cannot stress enough how incredibly happy I am that Nancy is going to May Court. Not only because Nancy will be given the absolutely best care anyone could ask for at this stage in her life, but also for the boys - Mark, Adam and John. From now on it will only be about all the love!

For those of you who are far away - this is the link to May Court - I'm sure you can tell that Nancy deserves this. I love her dearly. Hospice at May Court

Nancy herself is ok but very tired. This is a hard thing to accept - going to Hospice is always a hard thing to say "yes thank you" to - but if Nancy is like the many other people who come into May Court, I can tell you all that she will relax within hours and be able to spend her last moments here on Earth in a calm, loving environment with the best possible care.

Love,
B

Safe at home

We're all back at our respective houses - MDM with B&B, me with mum and dad.

The doctor saw mum and as fate would have it she knew someone was available who could give mum a quick ultrasound. Between the blood work and ultrasound it was determined that it was a superficial thing and didn't require any more treatment than some tylenol and a cold compress to bring the swelling down. We were out of the place before 10:00pm.

Emergency rooms are such tricky places. If we'd called a doctor at 5:00 and he said mum needed to see someone and have an ultrasound, could we come in at 9:00 for an hour we probably would have been delighted to get to see someone so fast. But emergency rooms are all about waiting and that awful uncertainty that is inevitable in a situation like that. It's exhausting for everyone.

We're all relieved to be home.

Monday, March 28th

It is 7.45 pm and I have just gotten home from the hospital.

Nancy was seen by the nurse this afternoon. Nancy has a clot/lump on her leg and the nurse was concerned it might be a blood cloth, so she send Nancy to the General at 4 pm this afternoon. Apparently she believed it would take a couple of hours but by 6 Nancy was still sitting in the waiting area in Emergency.

I went over there armed with big pillows and to see if I could at least find a doctor to talk to or maybe make some sense of a very confusing situation. It seems pointless to many of us that Nancy with the time frame we have been looking at for the last 5 days, should be spending time in Hospital in Emergency sitting in a silly old chair.

I got to talk to the intake nurse who couldn't really tell me anything - I told her that with my hospice experience it seems crazy that anyone with very little time left should be spending it like this. That when in hospice any patient has a clot like that, they are given a blood thinner and then that is really it! She couldn't do anything but promised me Nancy was next to have a bed - if nothing more pressing came up.

5 minutes later the RN nurse came by to get Nancy. She needed to look at the lump and to take some blood tests. None of us went with her as it was a small area.

When she came back she told us that she wasn't really sure what it is - but that the tests might show. She suggested that Nancy would be given a bed fairly soon but it could still be a little over an hour.

I had a lovely chat with Nancy - she is still in good spirits but my, is she ever exhausted and I am upset that she is spending any kind of precious time left like this. They are still looking at hours ...

Nancy asked that I left - "it would be silly we all sit here waiting" and I promised her from day one that I will respect any wish she has, so I left. I told Mark to feel free to use the "Birgitte volunteers at May Court Hospice" as it does make people listen that little bit more - because they feel we know what we're talking about.

John needed a nice, long, warm hug and was a bit teary - this is hard on him. I am beyond impressed with him - told him I know it takes everything he has not to lose his temper when he has to sit there with her, helpless as can be. We had laughs but certainly this is the first time I have seen him struggle a bit. He says he is ok so long as I don't come along and start being too nice to him :) He is remarkable around her - there is more love than I think anyone has ever seen from these two and I told him that she will leave this place a very happy woman - feeling very loved by everyone!

I got home to a clean kitchen - my tupperware tidy (hasn't happened for years!) and obviously Dom has a job as a babysitter any time. The kids are just amazing - they know everything that is going on because Dom and I are talking about it in front of them - they are allowed to ask questions but honestly I feel they are all very ok with what is going on.

I will let you know what the outcome is - when I know!

love,

B

A thought for Jerry and Jane

Jerry's family is going through some very difficult times at the moment. While we're here taking care of mum our thoughts and love also with him and Jane.

Dreadlock family

Everyone took turns finding out what they would look like with dreadlocks.

Birgitte was a bit more resistant to the idea, sadly.

Monday Morning

Quiet morning here. Mum is up and dressed and sitting on the couch. She seems quite tired and I think it's clear that she's slowly winding down.

The weekend was very busy with lots of visitors. Lots of laughing and smiling and chatting. Mark and I went to fetch Jill for a visit on Saturday. Mum had a couple of Maplelawn friends visit moments ago. Best wishes and love are coming in over the Internet from all over the place.

Things are good here. Lots of support and love. Mum is comfortable and happy.

Sunday March 27th

I have just taken David to the bus station - he's flying out from Montreal tonight.

We went by the apartment to say "bye" before he left and I had a little time with Nancy on my own. The nurse was there when we got there - and she was suggesting that Nancy had extra pillows in her back as she'll be able to breathe better that way. I also suggested extra pillows under her arms as she really is too exhausted to hold up her body, and a supporting pillow is a great help.

Nancy is still in good spirits. The smile doesn't leave her face for many moments before she finds another reason to bring it back. She is much the same as when I saw her yesterday. However, she was expressing how upsetting this is, because it is happening too fast for her brain to compute.

I had her laughing as I told her about the party at our house last night - and she went on to tell me she is so grateful that everyone can just stay here - I told her that she must remember that we enjoy being together, and that of course there are tears but that there is also a whole lot of laughter and stories shared. She was happy to hear this - that we are not sitting around worrying all the time but actually enjoy being together.

All in all - it is strange to see her doing so well when at the same time we have the information that she has very little time left. I am so proud of her for showing such strength. She seems determined to bow out with grace and dignity. And so far she's doing just that.

with love,
B

Quiet Moment

I'm sitting on the bed with mum. She's sleeping, I'm chatting with Nancy (who is waiting in the departure lounge at the Vancouver airport) and sorting photos.

I've got Skype going most of the time. If you'd like to say hello you can find me as "adampwsmith".

The nurse came by today and checked up on mum. Everything is sorted out and unfolding as it should.

Friday March 25th,

Bob has arrived back in Ottawa and we managed 20 mins in the apartment before we had to go pick up our little "sausages" ...

The nurse had just been to see Nancy and had given her some kind of meds - she was very dozy and asked that we left her after a very short while. That is absolutely ok - she is still smiling her lovely smile - but with the meds she seemed more ill than when I saw her last.

Bob is happy to have made it back and to have seen her. As he puts it, there is nothing he needs to say to Nancy or do, as both him and I have told her time and time again over the last 3 years, how much we love her and how grateful we are to have had her in our lives on such a regular basis.

Adam told us that the kids are now allowed to see her - guess that is both good and bad news because somehow that means they no longer worry about secondhand infections I guess. Maia is very happy to have been told she can see her - I'm hoping we can go by tomorrow at some point. We'll see - Dom and Milo are arriving shortly before 6 pm today and Nancy Miki tonight at 11 pm. 

with love,

B

Friday morning

Mum is awake and much much more alert than yesterday. "I'm not taking anymore of THOSE damned pills." Dad says her temperature has come down to normal.

Mark arrived very late last night and is chatting with mum. It's a bright, sunny morning in Ottawa.

Adam here.

I arrived around 1900h and dad picked me up from the airport. A long hug and he was shaking, but he pulled himself together quickly.

Got home and mum was sleeping. She tried some of her prescription, but it completely wiped her out. She's never been a pill-taker, so it probably doesn't take much to overwhelm her. (I'm the same way - the stories of me in the dentist chair taking nitrous oxide are pretty funny.) She rallied enough to come into the living room and sit down on the couch. We talked a bit, but she's clearly just too zonked, so I said "don't worry... I'll be here. You let that stuff wear out and we'll talk then."

She looks great - very smiley and happy and lucid. It's good to be here.

Marks' flight was cancelled, so he's rebooked onto a later flight. I'll be going to the airport some time around 0100h to pick him up. He must be feeling pretty rough by now.

The prognosis for mum has changed rather drastically after they saw the haematologist yesterday (Wednesday). The leukaemia is progressing must faster than expected and any treatment won't have time to kick in before it takes her over. So the plan is to provide palliative care. The best guess is that she will be alert and clear for about a week and then slip into a coma as her organs finally give up the ghost. A day or two later she'll be gone.

In the meantime we're having a good visit and everyone is comfortable.

much love

adam

a little card from Maia ...

I thought I'd share this with you - Maia made this card at school today

Nancy and Maia ...

Kids are so uncomplicated and direct ... I love it!

with love,
B

Thursday March 24th

Please remember to check out the comments under my posts as they don't open unless you click on the link.

Nancy told me yesterday not to come every day but to phone instead and I thought this afternoon would be a good time to do so.

John and Nancy went out this morning to go to the bank and to organize a wheel chair. Unfortunately, John tells me, the place didn't have one ready and had to clean one up for her. This apparently took too long and John was getting quite concerned that Nancy was turning a shade of color he wasn't happy with. The wheel chair place was very apologetic and has promised to call when they have a better wheel chair for her. All in all they are happy with the service.

Nancy decided to try a morphine pill this morning. John says she'll never take another of those! She got very dizzy I think and it is certainly a very strong painkiller for someone like Nancy who doesn't take pills happily. Whether she might have to take another one later, who knows, but for today she had to have a nice long snooze to get rid of the effect.

John sounded in good spirits. They are happy that she'll be able to go outside - it is gorgeous here today and I'm sure the sun will have made her smile big time.

Mark and Adam are on their way - both arriving early this evening. Not sure if they will stay here, John has set up a cot for either of them in the office over there, so maybe they will both chose to stay there - if not we have made up a bed for them here. It will be lovely to know they are all together.

love,

B

March 23, 2011

I went over today to drop off little tubs of chicken soup and carrot soup - just like Nancy had requested. I doubt she'll eat much of it, but now she has little tubs in her freezer and she is grateful.


Unfortunately they had just come home from seeing the specialist who had given them the sad news that no treatment will be able to help her and that she has now been moved to palliative care.


Nancy was ok - still full of smiles, she is determined to get through this with a smile on her face - and so far she's doing just that.


I managed to ask if she is in pain and she is - she believes it is her spleen that is bothering her. This is why she is not breathing well, because it hurts. I'm thinking one of the many new pills will be to relieve this pain - I sure hope so.


I have agreed that I will go once a week - she needs her time "to think" as she puts it and I totally respect that. There will be plenty of visitors and if I can go in and help once a week with some practical stuff then I'm happy to help.


Lots of love,
B

March 23, 2011

I have sent all of you an email as well as an invitation to this blog. I wanted to make a safe place where everyone has a chance to get more frequent updates. It is hard being far away. Bob will of course see Nancy every weekend, however I am the only one who'll be able to go daily and I want you all to have a chance to know how she's doing.

I am happy to answer private emails - of course, and this is not an easy way out for me, but a chance to make sure that all of you get the same information at the same time.

You all know that Nancy is very dear to me - our relationship is a kind and loving one. I trust her and know she trusts me, I promise all of you that anything you want me to do for Nancy from here I will do so happily.

Also, please know that Nancy and John both told me yesterday that they really don't want any guests to stay at the apartment. Our home is yours for as long as you'd want to stay. We have lots of space and beds, and I will be happy to provide a key so that you can come and go as you please.

with love,

Birgitte