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.