Sunday, December 30, 2012

Sleep in heavenly peace...

It's taken me a few days (five in fact) to get myself together enough to write this post.

On Christmas morning, my beautiful mother, Isobel, slipped quietly away from this world. I was having breakfast with the family next door, having enjoyed the fashion parade from the girls showcasing all the clothes they had received for Christmas, when the hospital called. The nurse told me that Mum's time was close, and I should come in soon. Ten minutes later, she called again to say Mum had passed.

As I was sitting at the table taking in the news (and we all had a bit of a cry together), I received a text message from a ministry colleague back home, and in response told her that Mum had only just died. She replied with, 

This day of birth becomes her day to be born into the next life. 'no more pain and death; God himself will be with them'.

Mum was more than ready to go, and I am rejoicing that her suffering and pain are now finally over, and she has found peace.

During the last couple of days of Mum's life, we shared some special moments. She moved into a private room on the Saturday afternoon. The Sunday was the last day that she was able to use words to communicate. Late morning, her friend Janice and husband Frank came to visit. When they arrived, I said, "Mum, look who's here," and she said, "Janice" very quietly. When Frank came in and said to Mum, "It's Janice and Frank," Mum's response was a very emphatic, "I know!" I couldn't help but giggle. When they left, Mum raised her hand in a wave, and said quietly, "Bye Janice."

Later that afternoon, we had a precious exchange, when I was holding Mum's hand, and feeding her pieces of ice (the only thing she was able to cope with by that stage). I said to her, "I love you Mum," and she replied, "I love you too". These were the last words she ever spoke to me, two days before she died. A special moment that I'll never forget.

The next day, Christmas Eve, was a bit busy, as a cousin and his wife made the trek from Coffs Harbour to visit Mum that morning. It was a traumatic time, as they hadn't been in touch with Mum through the year, and only found out about that she was sick, and indeed dying, the previous day. So there was still an element of shock that they were coming to terms with as they sat at Mum's bedside (and to be honest, it was the kind of angst and trauma that I really could have done without at that stage).

An hour or so after the cousins had left, Des the hospital chaplain popped his head in. He came in for a chat, and prayed with us. I was very grateful for his calming presence, and felt that my equilibrium was restored by the time he left us. Soon after that, we had a visit from a miniature horse, who came clip-clopping up the corridor to visit all the patients and their families. The horse's owner brought him right up beside Mum, and took her hand and stroked it down his muzzle, as by that time Mum was too out of things to do that in her own strength. In her younger days, Mum used to ride, and she loved horses, so I hope she enjoyed that visit (even though she wasn't able to respond in an obvious way).

After the doctors' visit a little after that (I suspect the horse would have been a hard act for them to follow, but still they persisted :-), I went home for lunch and a bit of a break. I came back a couple of hours later, and as I walked into her room, Mum's eyes met mine, recognition dawned, and a huge smile spread across her face, showing how glad she was to see me. My heart melted.

Even though Mum wasn't able to communicate with words any more, I knew that she heard and understood everything that I and others said to her (which was obvious when she responded strongly to something that the doctor said to her that day). When I said goodbye to her as I left that evening, I told her that tomorrow would be Christmas, and that I would be having breakfast with the 'grandchildren' next door, and then coming in to spend the day with her.

I kissed her goodbye, and that was the last time I saw her alive.

I'm not sad or angry or disappointed that she chose to leave this life on Christmas Day. As some of my friends have pointed out, it's a special day for a special lady.

I'm also not sad or disappointed that I wasn't with her when she died. Whilst it certainly would have been nice to be there holding her hand as she breathed her last, I think she chose her moment to slip away quietly when she was ready. And she also knew that she was surrounded with love and prayers, and didn't die alone.

The last few days have been taken up fielding phone calls, and making funeral arrangements. Tomorrow is my birthday, and I have a few fun things planned for the day, but I will miss her terribly.

Mum's funeral will be held on Friday, 4th Jan at 2pm at North Ryde Community Church in Cutler Pde. 

Saturday, December 22, 2012

It's time...

"If you want to say goodbye to Mum before she dies, I suggest you come up sooner, rather than later. Her time is close."

These are words that I never in a million years imagined I would ever be saying. But I said them a number of times today, as I rang various friends and relatives to let them know how drastically Mum's condition has declined during the past few days.

So, this morning, the parade of final farewells began. And this afternoon, thankfully, Mum was finally moved from the four-bed, shared ward into a private room. So we will at least be able to enjoy some peace and quiet, and privacy, during her last days.

Despite having many months to get used to the fact that Mum is going to die, and six months of living here in Sydney with her, witnessing first hand the gradual decline of her health, there's still a part of me that just can't believe that she is really dying, and doing it NOW.

I guess it will take a while yet before I fully manage to take it all in and accept it. 

Thursday, December 20, 2012

How long, O Lord?

This is my current cry to God.

Mum has been in hospital for a week now, and it is obvious now that she will certainly not be coming home. Both her physical and mental states have deteriorated significantly since her admission, and she hasn't eaten anything since Friday (not that she was eating any real food before that, but at least she was having some nutritional supplement drinks, which she is now refusing).

A catheter was inserted two days ago, as she hadn't passed any urine for a day and a half, and today the doctor said that a syringe driver would be implemented tonight for the administration of the bulk of her medications, as she has been having more and more trouble swallowing pills over the past few days, and her constipation seems to be having a deleterious effect on the absorption of her oral pain medications (resulting in more breakthrough pain episodes for her over the past couple of days).

Yesterday Mum lamented to the doctor that she is totally fed up and just wants to die. The doctor very beautifully and gently reassured her that they are doing nothing to prolong her life, just trying to keep her comfortable. She seemed satisfied with that.

For some time now I have been praying for Mum to die, and have asked my praying friends to do likewise. My biggest prayer for Mum throughout her whole illness has been that she wouldn't suffer too much with it all. Well, it's certainly gotten to the point (and has been there for a while now) where her suffering level has become unacceptably high.

It's been interesting observing the dynamic in Mum's four-bed hospital ward. Mum seems to be the most advanced in her illness, in that the other ladies are all eating quite well, and have been reasonably mobile and able to move around, even if with a bit of assistance. Mum is not able to do any of that. She remains in bed, only moved as nurses are able to reposition her, and the only thing she is currently consuming is sips of water, and sucking on ice chips. Yet, she is also much quieter than the others. When the lady opposite Mum is in pain, the whole room knows about it, as she moans and groans very loudly until she gets relief. (Don't get me wrong, I'm not saying this is a bad thing, but just so foreign to the way Mum is managing her own pain and misery).

When Mum is in pain, she doesn't say anything, and in fact, usually doesn't even ask for pain relief unless someone (myself, a nurse or a doctor) specifically asks her if she's in pain. One of the nurses said to me the other day, "your mum is pretty quiet isn't she? She doesn't complain, and rarely makes demands of staff." 

And that's the kind of person Mum has always been. A quiet achiever, who never makes a fuss. Some things that are part of a person's core character never change, even when everything else is stripped away.

This evening after I left Mum, I spent a few minutes sitting in the hospital chapel. They have a prayer book there, where people are invited to write prayer requests. I wrote in the book: 

Lord, please take her, she's ready to go.

That is my prayer from now until God sees fit to call her home.

Feeling like a real failure in the domestic goddess stakes

Today for the first time, I was actually glad that Mum won't be coming home from hospital.

Since Mum's admission on Friday last week, my usual daily pattern has been to go into the hospital in the morning, spend a few hours with her, in order to catch the doctors' rounds, have a pre-lunch drink from the Jolly Trolley*, eat her lunch (the meals at Greenwich Hospital are yummy, and Mum's not eating anything any more) and then sit with her for a bit before heading home in the early afternoon for a bit of a break (and to run errands, do some basic chores at home), and come back to the hospital in the late afternoon for a couple of hours.

Today I decided to get a haircut in my early afternoon break from the hospital, so popped into the hairdresser that Mum goes to, on the off chance (which paid off, as I was able to get a cut on the spot). When I got home, I decided to dye my hair.

Some weeks ago, I became a victim of advertising, and purchased one of those new-fangled home dye kits that involve mixing a liquid with a colour powder in a plastic shaker and shaking vigorously to mix it up. After all the shaking, the resultant colour treatment is a foam, and the advertisement says that this makes it easier to apply ("just like shampoo"), and less likely to drip than the usual cream hair colorants, and it's supposed to be kind and gentle on the hair.

Well, let me tell you what happened. Firstly, after shaking vigorously the number of times decreed by the instructions, when I opened the shaker the concoction had not mixed all that evenly, and there were numerous lumps of unmixed powder throughout the mixture.

The 'foam' was also not as stiff as I thought it should be (as it appeared in the TV ads), and in fact was a tad watery (and when applying it to my hair, it was in fact more prone to drip than the colorant creams I have used in the past... and drip it certainly did :-( )

But the worst thing was that with all the drips, I managed to get some of the dye on the sole of my shoe... (are you cringing as you anticipate what's coming next, dear readers?)

Yep, you guessed it... when I had finished applying the dye, and had wandered out to the loungeroom to sit down and wait for it to do its thing... I saw them... some spots on the carpet... on the NEW, plain beige, carpet... vibrant RED spots. The worst was just outside the bathroom, and another about a metre from that, and two small ones in the dining room. At first I sponged them to try to remove the dye, and they didn't look too bad... but then, after the dye time had elapsed for my hair, the spots were much darker on the carpet (understandable, I guess, as the colour had developed on the carpet pile over that time :-(

I had another go at them with a special carpet stain remover... but they are all still very obvious :-( 
(so, needless to say, I'm very open to any suggestions for getting the stains out of the carpet, noting that the hair dye is of the permanent variety :-/ ).

Oh, and I also managed to get a smear of the dye on the white trousers I was wearing.... and some spots on my purple T-shirt. Have just put them through the wash, with copious amounts of spray on stain remover, and napisan in the machine, but haven't looked at them yet to see how successful that was.

So today I am feeling like soooo NOT a domestic goddess of any kind, and have resolved that from now on, the only colour that goes on my hair will be put there by a hairdresser in the safety of a salon.

Like I said above, I'm glad that Mum won't be coming home, so she won't see how I've managed to so obviously spoil her lovely new carpet. I also won't be telling her about this incident, as I figure it's going to be my problem in the long term, so she doesn't need to be bothered with it now.

* Every weekday, just before lunchtime, volunteers at Greenwich Hospital bring around a drinks trolley to all the wards and day clinics, with all manner of alcoholic beverage, soft drinks, cheese and crackers, chips and chocolates. I was sure I'd written about this in an earlier blog entry, but can't find it.

Friday, December 14, 2012

The beginning of the end?

This past week has been very hard. Mum’s condition has deteriorated significantly, both physically and mentally. She has been having some very disturbing and distressing dreams (e.g., the other night she woke in the middle of the night, terrified, and convinced that someone was in her bedroom, wanting to do her harm). 

Today she was admitted to Greenwich Hospital for symptom management. At this stage I’m not sure how long she will be there, as there are two possible scenarios: 

The first is that she may have a urinary tract or other infection that could be responsible for her increased weakness, fatigue and mental confusion. The hospital will be performing tests to check out this possibility, and if it is the case, there will be a relatively easy fix, with some simple antibiotics, and she may start feeling better and be able to come home soon. 

The second scenario is that the symptoms are just part of the next phase of Mum’s all-too-gradual decline, and if that is the case, the doctor predicted that she probably won’t come home from this hospital visit. 

I am exhausted and emotionally wrung out, and whenever someone asks me how I am, my standard response is to burst into tears and say, “I was ok till you asked me how I am”.

The day before yesterday I posted all Mum's Christmas cards, with a note inside to catch people (who she only has contact with once a year) up on her cancer situation. I predicted to someone that once these cards reached their destinations I would be deluged with phone calls. Just got home from the hospital and the first of the, "I was so shocked to get your letter. Call me," messages has arrived. I might think about calling back tomorrow or maybe Sunday. 

(A friend has given me some wise advice to change our answering machine message to say that things are hectic and it might take a while for me to call back, and tell the hospital and close friends to call my mobile rather than the landline... But right now I'm curling up with some single malt scotch for a quiet night.)

I’m glad Mum’s in hospital, even though she’s not at all happy to be there (but she said that she’s glad that it will at least give me a break). The team at Greenwich are amazing, and once again I am very grateful for the things that they are able to offer Mum in so many aspects of her care. 

I hate that Mum is generally miserable, and suffering so much with pain, extreme weakness and mental confusion (and especially that she is sharply aware of the fact that she’s losing the plot mentally). Everything is such hard work for her and she has very little quality of life right now. For a while I have been praying for her to die, that she will let go and allow God to take her. For those of you who are praying people, I ask that you please do the same. It’s just too cruel to see her the way she is now.

You know what I hate? You know what I hate? You know what I hate?

This was the catch phrase of '80s comedian Rodney Rude... and in the spirit of Rodney Rude, I feel the need to preface this post with a strong language advisory, as I may end up getting a bit ranty. 

I hate the fact that I have to watch my strong, smart, independent, funny mother fading away to a shadow of herself; both physically and mentally. It's all so fucking unfair.

I hate the way well meaning people keep telling me to 'be strong', or 'stay strong'. I know that they're just trying to be nice, or supportive, but do they really think I'm not already doing the best I can on that front?

I hate that I can't look at Mum, talk to her, or talk about her to anyone, without bursting into tears. So much for being strong, eh?

I hate that Mum woke up terrified in the middle of the night last night; convinced that there was someone in her room, wanting to do her harm.

I hate that my knees are giving me so much trouble- making it difficult and painful for me to get around the house and do the basic things I need to do in order to care for Mum. 

I hate the indignity of constipation, and then diarrhoea, and not making it to the bathroom in time, that causes Mum to live in perpetual fear of embarrassing herself.

I hate that I am so tired all the time, and now am almost afraid to go to sleep, in case Mum has another disturbed night and needs me.

I hate that everything is such an effort for Mum; that she can't even get up out of her chair without needing time to catch her breath. 

I hate that even though there are many people who have offered to help, (and I know that they genuinely do want to do whatever they can), whenever I ask one of them to do something, like sit with Mum so I can go out to do some shopping, or have some 'me' time, or to do anything else for us, it feels to me like I am somehow failing, or being selfish to want some time to myself (even though I know how necessary this is).

I hate that cancer is such a slow, sneaky bastard of a disease, that is having its way with my mother, and taking its own sweet, fucking time about it. 

Tuesday, December 04, 2012

Please God...

This past week has been hard. Mum continues to wake up in increasing pain, and although the fentanyl lozenges initially seemed to provide hope of a more rapid relief, after a few days, they were not as effective as we'd hoped. 

So this week, we had our usual visit from the home nurse, but because of some of the complications of dealing with Mum's pain and some other symptoms, we had a second visit, from the nursing supervisor, the next day. She rang the doctor from Greenwich whilst she was with us, and made arrangements for a prescription for a stronger dose of fentanyl to be faxed through to our local pharmacy.

I rang the pharmacy to give them a heads up that the prescription was on its way, but because it was late on a Friday afternoon, it was too late for the special order to make it for next day delivery, so we had to wait until this afternoon for the new meds to arrive. This meant that for Sat and Sunday mornings, Mum had the lower dose fentanyl lozenge, and I was told to also give her a usual dose of Endone, so that if the fentanyl didn't have a satisfactory effect, at least the Endone would kick in...  eventually.

So we did this for Saturday and Sunday mornings. I gave Mum the Endone pills first, then the fentanyl lozenge, and sat beside her on the side of the bed, rubbing her back, as she sucked on the lozenge and waited for the pain relief to start to kick in.

This morning (Monday), it was a bit different, as we had run out of the fentanyl lozenges, so all I was able to give Mum this morning was the Endone pills. As much as she was excited by this (as she doesn't really enjoy the process of sucking the lozenge), it meant that she was in agony for almost two hours, until the Endone kicked in. 

As I sat, rubbing her back, and then helping her in the bathroom, she whimpered that it was too cruel, that she just wanted to die, and be out of this misery. I cried. I also prayed. I prayed like a desperate woman.

Throughout Mum's illness, I have never prayed for God to take away the cancer; to miraculously heal her, but only for her not to suffer, and that her death would be peaceful and quick. Today I reminded God of this- that I had never prayed for him to take away the cancer, but now I was praying for him to take away Mum's pain. Please.

To make things just a little more complicated, this morning I had an appointment for a mammogram and ultrasound at 11:30. I was planning not to tell Mum about this, as she has enough of her own stuff to worry about, but given that I had to leave her at a time when her pain medication hadn't fully kicked in, I felt I needed to tell her why, and couldn't really claim to just be going shopping.

This afternoon, I wrote on Facebook:
I know it probably sounds terrible, but I'm actually praying for her to die. She is suffering too much- she has excruciating pain in the mornings that we just can't seem to get on top of; she isn't eating, and is weak as a kitten, having trouble getting up out of her chair, or doing just about anything, and is generally miserable, and we both want it all to end. Needless to say, today hasn't been a good day.

I'm now hoping and praying that tomorrow morning, the double-strength fentanyl lozenge will do the trick for Mum's pain, and bring her relief quickly. I guess I'll just have to wait and see... and keep praying.

Thursday, November 29, 2012

Central Station?

Today our next door neighbours popped in for a visit and commented that lately our house has resembled Central Station, with all the comings and goings of various people.

I suppose it takes someone from outside to point out the obvious, as it hadn't occurred to me that this was happening... and then I thought- today we had three lots of visitors (including said neighbours).

And overall this week:
Sunday- the neighbour from the other side of us dropped in
Monday- we had the podiatrist come
Tuesday - we had the cleaner
Today- we had the neighbours, a councillor/support worker, and a friend of mine who dropped in
Tomorrow- we have the nurse coming
And of course, I've been in and out a few times.

Hmmm... and this has been a relatively quiet week....

Tuesday, November 27, 2012

It's been a hard day

Mum woke up in excruciating pain; I sat on the bed with her, rubbing her back as she groaned, for about ten minutes, waiting for the fentanyl to start to take effect.
It was a rugged start to the day.
I cried.

Our cleaner came this morning, and because Mum was a bit late waking up and getting going, I had to have a quick shower before the cleaner arrived, so didn't have time for a good cry in the shower.

Mum had a little mishap this morning, and just as I finished cleaning things up the phone rang. It was Bettan, the coordinator of the counselling and support service run by the agency that provides our cleaner (Catholic Community Services). Bettan often rings to see how we're going, and especially how I'm travelling in the role of carer. I told her what had been happening today, and she commented how strong she thinks I am to be caring for Mum so closely through all of what she's going through; and that in her experience this is pretty rare. She said she has seen so many people in similar situations to Mum struggling along on their own, even though they may have children. She said that she admired me for what I'm doing.
I cried.

After all this, I felt the need for a bit of space and a change of scenery, so after lunch I went to the local shopping centre. First stop Medicare office to make a claim, but some problems with the details of the paperwork, so will need to get the receipt reissued, with additional info on it, and then go back and try again in a couple of weeks. OK, not so good, so next stop- coffee shop.

Up to the Loft level, with thoughts of rich, sweet, chai latté (and something naughty but nice to nibble). After such expectations, I felt like crying when the latte arrived, and it was a bit on the tepid side. I probably should have said something, and asked them to make it hotter for me, but that would have been too hard.

Next, a lap of the ABC Shop, where I was about to spend too much money on some fun DVDs and other treats, when my phone rang. It was the doctor from Greenwich returning my call from earlier in the day. I told her what had been happening for Mum, and shared my suspicions about some of the new things going on.
And I cried. 

After a couple of other stops, including some grocery shopping, I called into the chemist, to collect a prescription for Mum. Our lovely pharmacist asked me how I was going, and how Mum was... and I cried.

Then I got home. Mum was comfortable and peaceful. I helped her bathe, and then had a very LARGE gin and tonic.

I am so weary, and hope that tomorrow is a little easier.

Sunday, November 25, 2012

It's Sunday afternoon...

It's a hot, Sydney, almost-summer Sunday afternoon (the thermometer reads 36C on the back deck). I have been to church this morning, and joyfully celebrated the reign of Christ, the climax of the liturgical year, and am now relaxing at home with my feet up, and the aircon on.

Will probably think of organising some lunch soon; for me, some sweet and sour pork and fried rice, left over from a takeaway treat, and for Mum (once I wake her up), some rice custard, brought by cousins who visited yesterday.

Mum has had a relatively good morning (and not only because I left her alone for a couple of hours when I went to church). She woke up with severe back pain (a daily thing now), but the new pain relief medicine gave her some relief after only 10 minutes, and after an hour, she said she suddenly realised she was pain free (which is much better than the other medication that takes 2 hours to kick in fully).

So, with all this, I'm on a bit of a high... feeling good about life in general; glad that, finally, something we have tried to help better manage Mum's breakthrough pain has actually worked; and am looking forward to a bit of snoozage later in the day. 

But before snoozage, I think I might go to the gym... something I haven't been able to do for over a week, due to my knees being a bit painful... and actually I'm quite looking forward to it... what a strange thought!

It must be a good day! Thanks be to God.

Saturday, November 24, 2012

Another ranty post, this time about death, language and misconceptions of palliative care

Yesterday one of my Facebook friends (who is a minister in a different denomination, in a different state) posted a status update speaking of how he never uses euphemisms to speak of death and dying, because using terms like 'passed away', or 'passed' or 'she was called home' etc imply a phobia of speaking of death.

Now, I can relate to this in some ways, and I tend, in most cases, to call a spade a spade (to use another euphemism) and use the words 'death', 'died', 'dying' etc. I am also a strong advocate of truth-telling at funerals (ie not pretending that the deceased was a saint in all things, and if there was conflict or difficult relationships that need to be healed, to name them, in a pastorally sensitive way, and not pretend that this wasn't the case). 

My friend later commented that the rationale for his pronouncement was that 'Language has power, and the more mysterious or distant we make death, the harder grieving will be when we all go through it.' However, whilst I certainly agree that our society is not good at handling death, or grieving, I believe that there are some times when it's just not appropriate to be 'in-your-face' blunt in our language, when people might need some gentleness and TLC.

The ensuing comments on my friend's status basically teased out these ideas; touching on things like truth and 'telling it like it is', pastoral sensitivity etc. Whilst I didn't necessarily agree with all that was said, I was ok with this discussion... except for one comment (made by another minister, also from a different denomination to me).

Her comment was:
We remove death by sending people to hospital and further removing them to palliative care, so afraid is our society of the reality of death. It is a spiritual ignorance and weakness.

Now, I agree totally that society does not do death well. I remember when I was still in Hobart, there was an excellent seminar presented by a hospice care organisation that made this exact point, that people in our time and culture tend to die in hospital, where everything is sanitised and formal and removed, rather than at home (where it used to happen), and many people, (and especially children) are shielded from death. And in fact, most people today would never have seen a dead body (whereas in the past, it would be normal for a deceased person to be laid out in state in their home, and for friends and family to visit, and pay their respects).

So on the surface, I agreed with most of this comment... until she mentioned palliative care. Maybe it's just me being over-sensitive, but in this comment, it seems to me as if 'palliative care' is being used as a kind of 'dirty word', as if it's somehow a bad or shameful thing to engage palliative care for a person who is dying; that in doing this, a person is somehow shunted away, or 'further removed' from normal society.

Because I have experienced, at very close and personal quarters, what excellent palliative care is all about, I took objection to this comment. In fact, I became quite angry at what I believe is a serious misrepresentation of palliative care, and was planning to write a ranty response to it on my friend's Facebook page... but then I took a breath and decided to let it slide... at least in that context.

But, when I was writing my last blog post about the amazingness of the care Mum has received from Greenwich, the anger came back to me, and so I felt that this forum would be a more appropriate place for me to have a rant, and also, more seriously, to talk a bit about what palliative care actually is (as I think this person's comment above indicates- to me at least- a lack of understanding of the full nature of palliative care).

Firstly, to say that people receiving palliative care are 'further removed' from ... well... anything...  is so wrong. Mum has been receiving care from the Community Palliative Care Team at Greenwich Hospital for almost six months. For all of that time she has been living at home, having spent only one brief period of a week and a half as an inpatient at Greenwich Hospital, for symptom management.

When I was preparing to come to Sydney to care for Mum, she was still quite well. She was eating normally, was able to move around freely, cook, wash, drive and do just about everything else she normally would have done (except play tennis, something she had to give up some months previously). Because Mum was still so well, it hadn't occurred to me to engage any services like palliative care, or even the home nursing service. It was actually an old school friend of mine, who is an RN who works with the Northern Sydney Home Nursing Service, who suggested that I make a referral to their service, as it was not too early for Mum to begin developing a relationship with the service.

And interestingly, the suggestion to refer Mum to Greenwich came, not from her oncologist, but rather from the home nursing service, and I'm very grateful that they set that process in train for us.

The thing is, the moment Mum's illness was diagnosed as terminal, the focus of her medical care became palliation, especially after it was discovered that the chemotherapy did nothing to slow down the progression of the disease. Palliative care, as far as we have experienced it, is about maintaining some degree of quality of life, and freedom from pain and other nasty symptoms, as much as possible. It's a complete paradigm shift from the usual quest to find out why certain signs and symptoms are manifesting, and trying to 'fix' the cause.

So when Mum was an inpatient at Greenwich, for the whole time she was there, noone ever took her obs (blood pressure, pulse etc) which is usually done at least daily in a general hospital. The only thing that was important was if she was comfortable; was she in pain? were her bowels moving regularly? was the oxygen helping her to breathe more comfortably? etc.

One of the main symptoms Mum needed addressed whilst in hospital was extreme breathlessness whenever she exerted herself even slightly. As soon as she was admitted, and we told the nurse Mum was breathless, she was put onto oxygen via nasal prongs, which made a huge difference. The doctor said to us, that if we wanted to find out the root cause of Mum's breathlessness (possibly a clot on the lung, which apparently is common in pancreatic cancer), she would have to have a CT scan (at another hospital, as Greenwich didn't have that facility), and then if it was shown to be the case that her breathlessness was caused by a clot, she would need to have daily injections of blood thinners. This would probably not get rid of the clot, but just stop it from getting any bigger. OR, she could just continue on the oxygen because it made her feel better (and increased her blood oxygen saturation), and not worry about what the cause of the breathlessness was. After discussing the options, we chose to go only with the oxygen, and the doctor later told us that this was probably the better option for Mum's comfort and quality of life.

And that's pretty much the palliative care approach: focus on the symptoms, make the patient comfortable, and don't worry too much about trying to get to the bottom of the symptoms, unless it's likely that such an investigation might reveal something that can be dealt with relatively easily that will improve the patient's quality of life by relieving symptoms.

Whilst palliative care is about looking after people at the end of life, it's much more than just that. 

Mum's palliative care has involved working with a physiotherapist to strengthen her muscles; working with a dietician to try to stimulate her appetite and help me to provide food options that would be of best benefit to Mum; having a physio and OT assess our house for ease of mobility for Mum as she started to lose strength (resulting in the loan of a wheelie walker, shower chair, bed railing and raised toilet seat); conversations with social workers to ensure that we are aware of, and connected with all the services and help that we need; 24/7 access to nursing staff I can call for advice if Mum has problems with pain or other symptoms (and I have made use of that service a number of times). In addition to all this, there is the regular contact with the doctors from Greenwich, and since Mum has been housebound due to her dependence on oxygen, the doctor has made a home visit, and called me a number of times to discuss Mum's symptoms and medications.

All of this time, Mum has been living at home, where friends and relatives have been able to come and visit her, and phone her. She has been enjoying the sport on Foxtel (especially now that the cricket season has started) and she is able to sleep in the comfort of her own bed.

We are hoping that Mum will be able to stay at home for as long as possible, and the Community Palliative Care Team from Greenwich is supporting us well to help this to happen.

So from our experience, palliative care is definitely not a dirty word, but quite the opposite.


Thursday, November 22, 2012

All this, and psychic too?

I know I've sung (very loudly and tunefully) the praises of the Greenwich Hospital Community Palliative Care team before, but I think I need to add another verse to that song today.

All of the staff and volunteers who we have encountered have been amazing, and I couldn't possibly wish for better care for Mum than that which she's receiving from the team at Greenwich.

Since entering the care of the Greenwich team, Mum has been seen by five different doctors. Ruth was the first staff specialist that Mum saw in the day clinic, and each appointment we had with Ruth lasted at least an hour, as she talked to us about every aspect of Mum's health and care; especially the ubiquitous issue of pain meds vs bowel meds, and advising me how to balance and tweak these.

Ruth is now in Nepal, working for Médecins Sans Frontières with her husband, so Mum moved into the care of a different staff specialist, Kat. Like Ruth, Kat was in no hurry in the consultation we had with her in the clinic, and when Mum was admitted to Greenwich for symptom management, Kat visited her a number of times during the week and a half she was there. Mum's comments about both Ruth and Kat have always been along the lines of how nice they are and how lucky she is to have them as her doctors.

During her stay as a inpatient, Mum was also seen by two junior doctors, Brigitte, the registrar, and a resident (whose name I can't remember). One or both of them visited Mum every day she was in the hospital, and were also very nice.

Since Mum's discharge from hospital, she is housebound, due to her requirement for oxygen, so now rather than going into the clinic at Greenwich to see the doctor, the doctor has to come to us at home. Enter a new face, Trish, the registrar. Kat was planning to visit Mum during the second week after her discharge, but due to illness of some of the junior doctors, Kat was required to focus on hospital rounds, so asked Trish to visit Mum. Once again, Trish was lovely, and would have spent a good hour here with us, talking through some of the tricky issues Mum's been having with pain in the mornings, and we discussed some possible strategies to deal with that.

A few days later (Tuesday afternoon), Trish rang me to see how we were going with the new strategies (which didn't make much difference), so we talked about some other options for me to try.

When our community nurse came to see Mum today, I told him about the tweakages of Mum's medication dosages and times Trish had suggested to try to manage Mum's morning pain, and that after one or two days, this didn't seem to be working. He suggested I give it another day, and then if no better tomorrow morning, to ring Greenwich to talk some more about other options.

So I wrote in my diary to ring Greenwich tomorrow (not because I'm so busy I need to diarise such tasks, but because my memory for such details is pretty hopeless at the moment). Then this afternoon, the phone rang, and it was Trish, saying that she was returning my call from this morning... except I hadn't called ... but I took advantage of her serendipitous timing (saying that I was planning to call her tomorrow anyway... is she psychic? :-)

One of Mum's issues at the moment is that she is waking up in quite severe pain, and it takes a good two hours for the breakthrough pain medication to kick in. (Once it kicks in, Mum is pain free, but it's that dreadful two hours of unrelenting pain, which is such a horrible way for Mum to start the day). During our phone conversation today Trish mentioned that there is a particular medication that is much faster-acting than the meds Mum is currently on, but this medication is only available to palliative patients on special authority, and is not cheap. I told her cost is not a problem, and anything that would help is worth a try. She asked me about our local pharmacy, and whether they would be able to help us out by getting this medicine in (which of course they will, because they are amazing).

So at the end of our conversation, Trish said she would phone the pharmacy, and arrange to fax through the authority script for this medicine, so that they could get it in, and then to us, as soon as possible.

We are indeed blessed to be so well looked after.

Wednesday, November 21, 2012

Just call me Miss Bossy Boots

Yesterday, as Mum was snoozing in front of the TV, I noticed that her breathing suddenly became strange and strained, her eyes were  half open, and it was hard to rouse her. She eventually woke up, and told me that she'd been having a dream. A very strange dream. It starred me, and I was apparently shooting her. 

Of course, dreams are interesting things, and the human psyche that manufactures them; who can understand it? My guess is that I starred in Mum's dream because I am the primary figure in her life at the moment (and the naughty part of me suggested to her that what I was shooting her with in her dream was not bullets, but rather tablets, since I thrust more than 35 tablets upon her in the course of any given day. We both had a bit of a giggle at that).

But seriously, there are times when I feel like, at best a Miss Bossy Boots, and at worst, a heartless bully, as I continually force Mum to 'eat', to take tablets, to have showers, to get up and get dressed every day. After every 'meal', Mum has to suck an antifungal lozenge to combat the thrush infection that coats her tongue. She hates these lozenges, as they taste sickly sweet and she finds that hard to bear. So I feel heartless when, three times a day, I ask her, "are you going to have your sucky tablet?" in a tone of voice that will not take no for an answer.

She keeps reassuring me that she doesn't mind me reminding her to take these tablets, but still, I feel like a bully.

Tonight, as Mum was getting into bed, she said to me, "Don't think for a minute that I mind you telling me what to do, especially at this time of night, when I can't remember what I have to do next."

I love her so much, and she has put herself into my hands so completely; sometimes I'm at a loss to know how to respond to such unconditional trust.

Tuesday, November 20, 2012

More simple things

Sometimes the simplest things can brighten our spirits and bring a kind of healing and lightness.

Flowers are simple things whose beauty can have a surprising effect on so many things.
When Mum came home from hospital, one of her tennis ladies brought her some roses from her garden. They were lovely; two very full yellow blossoms, a dark crimson one (with the most amazing scent) and a pink bud, which opened the following day. 

It was lovely to have these roses in a little vase on top of the unit in the lounge room, where we could see them all the time. Mum kept commenting on how beautiful they were.

From the small to the huge- the jacaranda tree in the backyard is now in bloom, and is absolutely stunning. The fallen blossoms form a violet carpet on the grass, and the birds and water dragons love to frolic amongst them.

Then today, another friend of Mum's visited, and brought with her a bowl full of gardenia blossoms, which we now have in a floating bowl on the dining table. The white blossoms are pretty and their delicious scent permeates the whole house, and it's wonderful. The scent is a reminder that it's spring; and the warmer the weather, the stronger the fragrance. It is also a reminder of the care and kindness both of the friend who gave them to us, and all the others who care for us in so many ways.

I love flowers, and when I'm at home, am grateful to my predecessors for the work they put into the manse garden that allows me to have roses, fresias, irises and others in vases around the house at various times of the year. So it's been delightful to have some flowers in the house to brighten things up as Mum journeys through this dark time.

Monday, November 19, 2012

She cracks me up

One of the aids Mum has to make life a little easier for her is a railing that attaches to the side of her bed, so she can pull herself up, and lower herself down into bed. It's great, and she really appreciates the help it is to her. But having this railing on the side of the bed means that at night when I help Mum into bed, and she's lying down, I have to lean over the railing to kiss her goodnight. Sometimes it's a bit of a stretch, especially as I didn't inherit Mum's height, and I'm not exactly thin. On some nights, as I stretch up on tippy toes to lean over the rail, Mum has said things like, "Don't fall on me".

Tonight, she was holding onto the rail, and as I went to lean over, she moved her hand, so that it was on the section of rail I was about to lean over... then I changed my angle of attack to avoid squashing her hand, but she moved it too, and it was a bit like a wacky waltz for a minute, where I kept bumping into her hand, and Mum said, "you do get in the way, don't you?" at which point I just lost it. 

I got the giggles.

Which made it even more difficult to lean over the railing to kiss Mum, and I missed her mouth the first time. 

And I giggled some more.

But eventually I managed to kiss her goodnight, and she settled down to sleep. 

These are precious moments, that I'm so grateful to be able to share with Mum.

Friday, November 16, 2012

Sometimes it really is the little things

Oh, beauty!

These are the words Mum greeted me with when I brought her cleaned dentures to her this morning. Her enthusiasm was rather disarming. Let me explain why.

After breakfast each morning, I clean Mum's teeth for her, and when I bring them back from the bathroom, I bring a little mug of bicarb mouthwash and a swab for her to freshen her mouth. The nurse who visits gave us a number of special oral swabs, that have heads made of stiff foam/sponge that is cut in a corrugated, 'zig-zag' pattern (especially helpful for scraping the coating off her tongue).

When the nurse gave us these swabs, she only had a few, and gave us a number of standard cotton swabs with them (like giant sized cotton buds), and so we have been using these cotton swabs since Mum got home from hospital. Yesterday when our new nurse came, I asked him if he had any more of the foam swabs that he could give us, as these do a much better job than the cotton ones. He gave us what he had (which was only a few) and then today dropped in a bundle of them so we won't run out in a hurry.

So this morning was the first day that I was able to bring Mum one of these better swabs for her morning mouth regime, and she showed her approval accordingly.

Oh, beauty!

I think I was rather surprised by her reaction, as she had been in quite a bit of pain when she woke up (which was a bit later today, at 8:30am), so I guess the pain med must have been starting to kick in by that stage, and she was quite chipper.

Another thing that has surprised me, is how much Mum has enjoyed looking at the photos from Grand Final day. When our neighbours decked our halls in red and white, I took a number of photos using my iPhone (and I was sure I would have blogged about Mum's beloved Swannies winning the Grand Final for her, complete with pictures of our red and white house, but it looks like I forgot to do that... BAD DAUGHTER! I'll include a couple of shots below). 

Mum had been asking me for a while to get the photos from my phone printed, so she could enjoy them and show them to friends without having to squint at the small screen of my phone. I finally did that this week, and Mum has been quite excited by how well the prints came out.

The house- decked out in its red and white on AFL Grand Final day.
After the match- Victory is sweet :-)
 The other night, she was poring over the prints, muttering about how great they came out, and thinking about which ones she wants me to print extras of to send to a niece in the US.

This morning, when I went in to organise to clean Mum's teeth, she was again going through the prints, and saying that she can't believe how well they came out. 

It was quite delightful to watch her alertness and excitement as she was doing this, reminding me that my Mum is still there, inside the shrinking shell of a body she inhabits. It's been interesting for me to reflect on the fact that it's often the little things, like the photos and the mouth swab, that bring out this truth. 

So the little things really do matter; we should never ignore them.

In the shower noone can see you cry

It's now two weeks since Mum came home from her brief stay at Greenwich Hospital, and we are settling into a routine, albeit one that is slightly different to how it was BH (before hospital).

Mum has always slept well, and still does; which is something that we are both extremely thankful for. However, since her time in hospital (AH), Mum has been regularly waking up with quite severe pain. Sometimes the pain is in her back, sometimes it radiates from the back around to her abdomen, sometimes it's sharp, stabbing pain when she breathes in, sometimes it's a colicky, gut pain, and sometimes it's a combination of two or more of these different kinds of pain.

The medication Mum takes for this breakthrough pain is quite effective, but the problem is that it usually takes up to 2 hours to fully kick in. So this makes the first hour or two of her day pretty rugged going.

Now those of you who know me well, will realise that I am Not A Morning Person, especially these days, as my sleep patterns have been mucked about a bit since being here in Sydney, and I seem to have become even more a 'creature of the night' than I normally am. So it's been getting difficult, as Mum is becoming more dependent on me to help her get up in the morning.

This morning, I woke up to the sound of Mum calling me. When I got into her room, I found her sitting on the side of her bed. She asked me for a pain pill, as she was in a lot of pain and didn't feel that she could get up and go to the bathroom without my help. She told me she'd been sitting there for about an hour, and had called me a number of times, but I didn't hear her at first because I was asleep.

As I looked down at her frail, wasted body, wracked with pain, and the simple, gentle way that she explained how long she'd been waiting for me to respond to her calls, I just melted inside. After getting her a pain pill, I helped her into the bathroom, and then to get dressed. 

One of the hardest things for me right now is to see the extent that Mum's body has wasted in the last few months. When I dress her in the mornings, and help her in the shower at night, there is no hiding the sharp angles of her bones, that are covered by skin and not much else; her stick-like arms and legs, and how small and pathetic she appears as she looks up at me with such simple and complete trust.

After Mum is dressed, she wheelie-walks herself to the loungeroom, where she parks herself in her chair, and after I ensure that she's comfortable and settled (with the TV on Fox Sports channel), I give her her pre-breakfast tablets and then have my shower before organising breakfast.

This morning, the first drops to hit the floor of the shower recess were not from the shower; they were my tears, as I considered what it must have been like for Mum to be sitting in pain on the side of her bed for an hour, calling me, and receiving no response. The shower is often my crying place after being confronted by the reality of Mum's situation; a refuge where I can let it all out without having to worry about Mum's or anyone else's reactions. As I have told many people in the course of my ministry, a good cry can be quite cathartic, and for me, crying in the shower is a bit like crying at the beach- there's already so much water around, that you don't notice a little extra.