Life as a Carer

It is lonely being a Carer

Anyone who is chronically ill needs a carer, or carers.

Last week I shared an item that I reacted to… that of a man, who was refused a flight booked by a hospital for a lung transport.

The news article (Adelaide Advertiser, South Australia) which prompted the blog was about a man with Pulmonary Fibrosis who had come up as a match for a lung transplant and been refused a seat on the flight the hospital doing the transplant had booked. I will not go into the details of that post, although I do need to make an observation.

One… there might not have been oxygen available on that flight for the man. This seems strange since the flight was booked by the hospital who would have done the transplant had the man been able to arrive there in time.

However, it also stirred up my thinking about the Carer… the person or people who care for the person with a chronic illness.

Unless a person who has a chronic illness lives alone and has no visitors, that person has at least one Carer.

Life as a Carer…

Life as a Carer often involves being a ‘parental’ figure. Often the person being cared for does not have an accurate view of his or her condition. This is a hard part of the carer’s job. Being the one who assesses what is needed for every hospital appointment, how to travel there safely and what medications might be missed/needed during the time away from home.

But carers often have the unenviable role of ‘nurse’, and – there’s more…

Carers often have to learn…

Carer has to learn

About the disease, its treatment, and management

About the medications prescribed including what they are for, any special instructions and potential side effects

Sometimes these put the Carer into the role of ‘antagonist’ to the person they are trying to support, often the person they love.

The carer needs…

  • Skills to help manage the fatigue, pain, frustration, and isolation that people with chronic disease often get – as well as their own.
  • To be able to communicate effectively with health professionals by answering questions accurately, asking your own questions and making sure you understand the information provided to you. (Talk about the information needed with the person you are caring for, if possible, and write the questions down and take them with you.)

One of my huge frustrations, and it was my late husband’s also…  was the specialist/doctor wanted him to answer questions. However, he did not understand the terms they used, and having been a nurse, I did. But, at least to begin with they did not want to hear my observations on his condition.

This had a counterpoint (opposing viewpoint) – sometimes my observations and his – clashed.

I remember attending a workshop for carers… At the beginning we were given a list of all the roles a Carer performed. It was a long list.

Something else a Carer needs –

… Understanding – or at least acceptance.

If you know someone who is a Carer – try to ‘cut them some slack’ – one of the first things to happen is they become ‘unreliable.’

  • They cannot make arrangements to have friends come to visit, or go to visit them. Many times they will have to cancel any arrangements. So, either the friends drop them, or they withdraw rather than face the embarrassment of having to cancel… again.
    • You will have to understand. (Or give up on the person.) It would be kinder to expect nothing and accept that it is a black or white spectrum. There are no shades of gray in this kind of life.

If you decide to care for the Carer… and the person.

  • Be understanding.
  • Accept that arrangements might change without notice, and do not take offense if they do.
  • Be a person they can trust with their feelings.

Being a Carer for a loved one is a very difficult ‘role’, so you need to accept that it is a way of life – their way of life. Lives which revolve around medical appointments, tests, medication times, and sometimes hospital admissions. These are the ‘outings’ for the Carer and person being cared for.

Being a Carer – or a person needing a carer is a very lonely place to be. Ask any Carer and they will tell you how difficult it is to hide their feelings and struggles from the person they are caring for. Ask anyone needing care and, depending on their insight about their Carer, they will tell you how much it hurts them to see the person caring for them struggling to cope with their care.

Whether the person is a Carer of an adult, a child, or someone in between, caring for someone with Alzheimer’s disease, or any form of dementia – in spite of differences in the type of care, they face the same loneliness. Sometimes the Carer never ‘gets’ their friends back. Without a supportive family or network, isolation sets in and becomes a way of life.

On the outside, isolated, although near people. It is a lonely place to be.

Loneliness of a Carer, in a crowd

Just thinking, and sharing.

Susan

Shame on you Qantas! Shame!

Pulmonary Fibrosis kills, and not in a pleasant way.  There is a strict criteria patients with pulmonary fibrosis have to ‘fit’ before being referred to a wait list for lungs. Some patients can survive with a ‘partial’ transplant… i.e, one lobe. Others need a double lung transplant – like the man who was the subject of the brief report on Saturday evening news.

There is a long list of criteria a prospective recipient must meet. (See list at the end.)

The subject of the news report, at 66 yrs of age is at the upper end of being suitable for a lung transplant…

“The man’, rushed to Adelaide Airport with wife son on Thursday to catch a flight to Sydney.

Waiting for them at St Vincent’s Hospital were the donor lungs he had been wanting for 26 months. The man suffers the suffocating lung condition pulmonary fibrosis where scars on lung tissue reduce oxygen supply to the blood resulting in perpetual shortness of breath.
The Adelaide Advertiser with identifying details removed.

The hospital had booked the flight from Adelaide to Sydney where an ambulance would take him from the flight to the hospital. But when the family arrived at Adelaide Airport what is called ‘a booking mixup’ denied the man the flight. He was booked on a later flight…”

but too late for the transplant!

The news report says… ‘Suffocating lung condition pulmonary fibrosis’   yes, it is correct, ‘perpetual shortness of breath’     this is correct as far as it goes.

Pulmonary fibrosis and normal lung compared

However, pulmonary fibrosis kills… and it is not a pleasant death. Someone suffering from this lung disease is smothered by his or her own lungs. All the ‘speckling’ on the lung on the left are areas where the fibrosis has taken the normal elasticity of the lung. In other words, breathing is already limited.

Pulmonary Fibrosis is a death sentence!

Put your head in a pillow case and see how long you are able to cope before tearing it off so you can take a ‘proper’ breath. People who suffer from pulmonary fibrosis can never take a ‘proper’ breath after the disease takes more and more of the lung(s). I know, I was sitting with my husband when he died from this dreadful condition.

Lung transplant is the only hope for sufferers.

The man on the news had been waiting 26 months.

Availability of donor lungs

Some patients will only wait a few days or weeks for their transplant but most will wait between 6 -18 months.

“Not everyone who is accepted on to the waiting list will receive a transplant. Unfortunately, some 10-15% of patients on the waiting list will either become so sick that they could not receive a transplant safely, or they will die from their lung disease before a lung becomes available.”
Lung foundation, Australia. http://lungfoundation.com.au/wp-content/uploads/2014/01/Lung-Transplantation_FS-Dec2015.pdf

Qantas has been in contact with the family to offer support in the difficult circumstances.

LUngs
Found on Pinterest

The truth of the matter is that Qantas was the cause of the man’s inability to obtain the double lung transplant. What support can they give… another set of lungs? That would be the only acceptable compensation to the dying man and his family.

In the unlikely event of another pair of compatible lungs being available, another wife will sit by her husband’s bedside as he literally fights for every tiny bit of oxygen his diseased lungs will be able to extract from the oxygen therapy he will be on.

I have walked that road.

                                                                                                           Susan

Shame on you Qantas!

DISCLAIMER:
I write from the point of view of a wife whose husband died from this dreadful and cruel disease.
Therefore I admit to having a bias because of my knowledge of the disease. I have no knowledge of the circumstances of the person or persons in this report.

 

Details about lung transplants…

“While a transplant center is free to set its own criteria for transplant candidates, certain requirements are generally agreed upon:

  • end-stage lung disease;
  • has exhausted other available therapies without success;
  • no other chronic medical conditions (e.g., heart, kidney, liver);
  • no current infections or recent cancer. There are certain cases where pre-existing infection is unavoidable, as with many patients with cystic fibrosis. In such cases, transplant centers, at their own discretion, may accept or reject patients with current infections of B. cepacia or MRSA;
  • no HIV or hepatitis;
  • no alcohol, smoking, or drug abuse;
  • within an acceptable weight range (marked undernourishment or obesity are both associated with increased mortality);
  • age (single vs. double tx);
  • acceptable psychological profile;
  • has social support system;
  • financially able to pay for expenses (where medical care is paid for directly by the patient);
  • able to comply with post-transplant regimen. A lung transplant is a major operation, and following the transplant, the patient must be willing to adhere to a lifetime regimen of medications as well as continuing medical care.

The potential recipient will also have to pass complicated medical tests including tissue typing and blood types must match also.

Leave Schapelle Corby alone!

Kerobokan prison where Schapelle Corby served time
Kerobokan prison, Bali

I turned on the TV last evening (Saturday) to watch the evening news and thought my clocks must be wrong. I changed channels. The media circus was on all of them. Schapelle Corby had fulfilled her parole period in Bali and had to go through the hoops to be deported. It was apparently the end of a ‘special broadcast.’

My first thought?

Will the media never learn?

The police had to clear the media out of the way in order to lead Schapelle to the waiting transport. (I don’t know how many times that part was re-shown while I prepared the evening meal.)

My thoughts were of the media frenzy that – depending on how you see it – either led to Princess Diana’s death in that Paris tunnel, or made her life extremely difficult even when she was no longer an in-law to the British royal family.

When the last night’s evening news did come on it was more of the same about Schapelle Corby… except now the media were pursuing the convoy of police vehicles transport this woman.

If you have been living in Australia for the last twelve years or more, it would have been very hard to miss all the media ‘blast’ about Schapelle Corby.

Quote from ABC News…

“Ms Corby was arrested in 2004 carrying more than 4 kilograms of marijuana in her boogie board bag and returns to Australia as a convicted drug trafficker who has served her jail time.

One of Ms Corby’s key defences put forward by her legal team and supporters was that corrupt baggage handlers had placed the marijuana in her bag.”

It is more than twelve years since then. Whether guilty or not she served the sentence.

Leave Schapelle Corby alone!

Stalk some criminals!

I remember after the divorce between Princess Di and Prince Charles, when she was still being hounded – I said to my husband, “Why don’t they just leave her alone?!”

We were in a supermarket waiting in a checkout queue at the time.

He pointed at the variety of magazines on display there – all with a picture of Princess Diana on it. He replied, “When people stop buying the magazines and wanting to read about her.”

He was correct. We are to blame.

For the media to leave Schapelle Corby alone, we must leave her to piece together a life again and stop buying the papers or magazines.

Susan 

Are we any different from the people who went to see the Christians torn by lions in the arena? Sometimes I wonder.

Loss, lost, living

signpost saying 'confused', 'lost', 'disoriented', 'bewildered', 'unclear','perplexed'

Emoji thinking
Plunged into loss, means loss of identity.

In the same way as most of my blogs come into my mind this one was stimulated by thinking of a dear friend and praying for her as she makes her way through the pains of new widowhood. My thoughts turned to my own experiences.

Looking at the people I have ‘lost’ in my life it would be hard to say which was worst. Each was ‘the worst’ at the time.

The first was my grandmother… first I lost her to dementia, as it was called then. I visited her, she looked my same beautiful granny – but she was ‘missing.’ She no longer knew me as her granddaughter. She welcomed me when I came, but as the ‘special’ nurse who came to visit. At least I had that. Then I lost her to death… and for the first time in years – she looked peaceful.

Cartoon phone ringing

By the time I lost my mother I had been in Australia for a number of years. Phone calls were expensive but we saved up dollar coins and went to phone boxes. The last time I spoke with her she was in hospital in the final stages of her battle with cancer. Blessedly, she had thought she had a stubborn ‘flu. It would have terrified her to know all those months before that she had terminal lung cancer. The worst thing about that last phone call… she was so breathless I could not understand what she said.

Next, there was my stepson. That was a long time after my mother, and he had been living with us. The shock will live with us. (I mean me) for the rest of my life.

However, the death of my much-loved and very patient husband probably rocked me the most. Other than when my grandmother died, which was before we met, he was a support, an encouragement – and with his son, we were fellow sufferers as we leaned on each other muddling our way through the ‘valley of the shadow of death.’

a dark valley image
Found on Flickr

It is a journey I used to think meant our own journey. Now, I see it differently. We walk through that valley as we grieve the loss of the significant person we have lost.

Sometimes it is not even to death – as is the case for those who mourn the living. The mother, father, husband or wife who is lost to dementia, or Alzheimer’s disease.

From time to time as these thoughts arrive I consider them, and pray for those going through that ‘valley’ – but there is more.

Whatever the loss… and sometimes it can be a loss of function, ability or job…

  • Our identity is lost.
  • We lose a role.
  • Most at risk are the people who are carers.

Let me give you an example, please.

I have chosen my husband because I was most involved with his care… but for others, for you – it could be a sick child, a parent… or it could be the loss of a job meaning losing the ability to be the carer or provider for someone else.

Do you identify with any of these statements?

When the funeral is over, or the time-card stamped for the last time – I no longer knew who I was.

In the case of a death…

  • The time I spent caring, accompanying him/her to hospital or doctor appointments is time I have nothing to fill. (Perhaps similar if it is a job loss.)
  • I lost sleep when the ambulance took him/her to hospital and worried if he/she would be alive the next day when I visited.
  • Our lives revolved around each other.
  • My life revolved around caring for his/her needs.
poem, saying goodbye
Found on Pinterest

As another friend and I shared experiences recently… when you are a carer, even shopping trips need to be timed and worked out to fit with the needs of the person you are caring for. How much time is there before you need to be back home?

Standing in a queue at a supermarket, or even attending your own doctor appointment can be too long.

You/I forget to care for your/my self.

So when there is the time, what do we do with it?

Would we not rather have less time and have the person we cared for back… rhetorical ‘cos it just does not happen.

Some of us make new roles, but for the most part, they are secondary to the ones that are lost.

Then when something special happens – the one you most want to share it with is no longer there.

The role of the redundant carer can be lonely… but new roles CAN be developed. What is gone is not something that can be found, but some of those functions can be channeled in other areas.

Ever wondered why the best people who understand what you are going through are such an encouragement?

Probably because they have tread the road before you.

Take hope, that person survived. So can you.

No one has ever suffered your loss, walked in your shoes. They walked their own, and know how difficult it is.

Tread softly

Susan

Book covers, the Apostle John series

Disclaimer….

Susan M B Preston, author of the Apostle John series says…

Although I do not think of people I know or have known when writing my novels, the experiences make their way into the novels. There are many places where I cry when writing or proof-reading some of the books. Although they are fiction, when writing I peeled back the layers in the New Testament and found the people. Guess what. They were people with emotions, like us.

Drawer full of memories – or clutter

 

Actually, they are both memories… and clutter.  At least, mine are.

I have a large drawer full of cards.

Picture of my dresser drawer

Every card that was sent to my late husband and I is a special memory. They are so pretty, the words are beautiful, inspiring, comforting – or all of the aforementioned. They also conjure up images of the people who sent them.

But when we keep them for years they are clutter.

Having come through World War 2, my grandmother kept all the buttons off garments. I loved playing with ‘Granny’s button box.’ Hand knitted jumpers (sweaters) were carefully unpicked, then unraveled, made into hanks, washed, rolled into balls and made a new jumper. If there was not enough to knit a new jumper, then another color was added, and my brother and I had striped jumpers. There were all sorts of ‘useful’ things that were kept because they might come in handy one day.

So, was she a hoarder, too?

Probably. But the house had a ‘lumber’ room. A bit larger than I have seen in Chicago called a closet. (In my childhood in Scotland a closet was a lavatory, but it isn’t in Chicago.)

Still, I learned a valuable lesson in my childhood… one I still struggle to shake off. If you throw something out, you will need it within a couple of weeks. My grandmother proved that time and time again. It also happened to me recently.

Memory Flashback

A long time ago whenever we bought something, we had to keep the box it came in during the guarantee period. “Return in original packaging” was the condition for warranty repairs.

Shed door

Our ‘storage’ room was accessed from the carport, and my late husband had ‘charge’ of it.

 

“What do you want done with this dear?”

“In the shed.”

One day he said, “There’s no room in the shed for anything else…”

We checked the warranty status on some of the goods… and realized the boxes had now reached clutter stage.

One day he said, “I am going into the shed for a couple of hours, please don’t come in.”

After a while, I cannot remember how long, I decided he must be thirsty by now and made him a warm drink… and took it in.

Whilst he appreciated the drink, he didn’t appreciate what I said, “You are throwing that out?”

Yes, they were memories, but we hadn’t looked at them for years. A program from the Phantom of the Opera, drawings the children had done, part of a dinner set… in case we ever bought another the same and needed more settings.  (Slight exaggeration, but I am sure you could relate.)

Storage shed of memories

Now, it is my turn. I have a blower/vac that will no longer blow. It will suck but there is a hole in the bag. There is a box full of X-Rays that I have no idea how to dispose of… and neither does anyone I have asked. The winter oil heater is in there and it will need to come in soon as we are heading for winter here in Western Australia. On the other hand, a pedestal fan will have to take its place.

There are a couple of large plastic storage boxes. A while after my husband died, someone advised me how to deal with the difficult task of sorting through his things. Make a memory box. “Put in it things that you are not ready to part with yet.” I did that. I have one for my husband, and another mixed, for our son.

Am I ready to deal with these yet? I don’t know… but I have to clear up the other stuff to get there. There will be a ‘roadblock’ in the way. At the bottom of the shelves are a couple of archive boxes of photographs. Some from my childhood, stretching through the years of my children’s lives maybe. Maybe the family would like those memories.

I would like to add… it is true. Throw something out and you will need it within a couple of weeks. I decided to dispose of a three year old box for my netbook. Into the recycle bin it went.

A couple of weeks later on the news it was announced that International travellers from Perth to the US would not be allowed to take laptops as cabin luggage.

I had heard of what happened to the laptops of people who packed them in their suitcases.

Computer box

“Oh, if only I had not thrown that computer box out. The small case in it would have been a good protection.”

A couple of days later I remembered. The recycle bin had not been emptied, it wasn’t full. Needless to say, I went and rescued the box.

I do not know if I will be able to travel this year… but if I am – there is the protection my netbook needs.

 

One more thing… I closed my eyes and put the cards and associated memories in the recycle bin.Memories no, only clutter

Having given myself a lecture, I decided that poring over memories is looking back. I will always have those special memories in my heart, but it is time to look forward, minus the clutter. As for the rest, I am working on them.

Looking forward to the future and reunions

Susan

The Donnybrook adventure

Why did I choose to drive myself to Donnybrook? Anyone who knows me, knows I do not like driving to places I have never been before. They probably also know I find it easy to ‘mislay’ myself. (Okay, I admit it… I get lost.) Perhaps some of it is to do with the problem I have with my left and right hand directions. Tell me to turn left, and I will probably turn right.

pulling over signpost cartoon

I have met many people who have the same problem… perhaps I should form a club.

Mary (not her real name) has been a friend for many years. We belong to the same type of church, and there were some special ‘days’ coming up. This year she invited me to come visit her – in Donnybrook. That is in the south-west of Western Australia. The only time my late husband and I went to Donnybrook was by mistake. We had been at a church festival in a town down south, I knew we had to find South West Highway to return home, (it was before the freeway went that far) and I found it. As we travelled, and the miles passed, and passed… there was nothing we recognised as looking remotely like the approach to the Perth suburbs.

Donnybrook signThen we saw a sign saying ‘Donnybrook welcomes you.’

“I don’t remember Donnybrook on the way down.”

A hotel had a sign out front advertising morning teas, so we parked the car and went in. When the waitress brought our coffees (I don’t like tea), I asked her, “If we keep going on this road, will we reach Perth?”

She smiled and said, “You will reach Esperance.”

Esperance was on the south coast of WA. I had been driving the wrong way!

Now, however, the freeway goes all the way to Bunbury… well, it changes name a few times but it is a straight road down. Till the big roundabout before Bunbury where I had to turn left… and I knew, in advance, what way I was turning. “There is a dedicated left lane,” Mary had said… and so had others.

Google map of Eelup roundabout

Mary had given me directions… but something didn’t quite add up. All was well until I had to turn left up South West Hwy.  and I did. Looking at the map detail now I finally can see what went wrong. The exit (left) for South West Hwy that I took was for the separate one going north. A little further on from where I turned left, was the next left turn, for the South West Hwy going south.

Google map, South West Highway

There are two separate left turns into South West Highway… and no markings as to which direction it is heading. (I noticed I was going the wrong way when some of the towns, which had exits from the Freeway on the way down,were coming closer.

Donnybrook – at last!

Ah well, I did arrive in Donnybrook and it was a wonderful time meeting people I had not seen for years, resting – yes, even writing some of book 5. (A new section to add to the existing draft.)

Cover imaage of award-winning Hold the Faith
Oh, Mary had recommended Hold the Faith (book 1 in the series) to a minister acquaintance. While I was with her she received a note from him. Amongst the other comments he made, he said that he had found Hold the Faith reminded him of Lynn Austin’s series Chronicles of the Kings. Mary was a bit unsure of the comment.

 

 

“If he thinks I write like Lynn Austin I take that as a compliment,” I said.

Lynn Austin’s series – the one he referred to, is about King Ahaz, King Hezekiah, and his son Manasseh. My late husband and I read them as they were released… they brought those people to life. Yes, like my series, they are fiction, but she too had done a lot of research.

So, it made me think – as well as feeling blessed, I will look up Lynn Austin and other writers in my genre and maybe even share my thoughts on them in a blog.

Till then, farewell.  I am safely home from Donnybrook and the return trip was much less complicated.

Keep smiling

Susan

PS – Book 3 in the series, The Light of Truth is available in print now on Amazon. So that Reader’s Circle members could receive a discount, I released it at a discount. On the 1st of May it goes to the ‘normal’ price of $14.95.

So… blog readers, you now have a chance to grab a copy at the reduced price.

Here is a link for you to check it out…  http://amzn.to/2pY0uZ5

 

Death and Grieving

Death and grieving

…is not something that normally dominates my mind, although it is always there. From experience, I have known the death of loved ones, and I also know the grieving journey is personal. It is something that is individual, painful, and affects everyone in their own way.

There is no ‘right’ or ‘wrong’ way to grieve. There is your way, and my way (which was stumbling through the process, wondering how I would survive.)

As for the ‘stages’ of grief, maybe some people have them, but in my experience they were not clear cut.

Why think of death now?

Two reasons this subject came to my attention again recently – one, in my book series, one character is about to explain about the death of another… to John. (Don’t want to give spoilers) was in this last couple of weeks hearing of so many people who had a parent who died.

The other reason was in this last couple of weeks hearing of so many people who had a parent who died.

One was the postmistress at my local shopping centre. While she is still feeling vulnerable, a customer came in and told her the sad tale of the loss of her own father. Jane (I will call the postmistress) sympathized and, I guess they shared their feelings. On the way out the customer stole something very expensive and was never seen again. Not yet anyway.

It is possible that the customer had indeed ‘lost’ her father, and in her grief had stolen the goods. It is hard to say, grief does strange things to us.

First death I experienced

Although I trained as a nurse, my grandmother, who was a patient, was the first person I ever knew who died. I was living in the nurses’ home, not far from the hospital and I had asked the ward staff to let me know if she deteriorated. (She had dementia, and was very ill with pneumonia.)

I always went to the hospital before my shift was due so I could go to my grandmother’s ward and see her. One morning I did, and her bed was empty, stripped. She had died and no one had told me.

My duties that day were in a psycho-geriatric ward in another part of the hospital. It was quite far into the shift before I realized that the reason the shift was going so badly for me, was that I was nursing other old people… they were alive and my beloved granny was not.

That was the only time I felt anger when grieving.

 

Australia, map with flag

 

When my mother died, I had been living in Australia for many years. She died of lung cancer and I remember how helpless I felt because I could not afford the fare to Scotland. (In those days the fares were a horrendous price, and I had a family here in Australia.)

 

Grieving a childImage tears in a bottle, from Paslms

My stepson, who lived with my husband and I, died. The police knocked on the door at 4.00 am. My husband heard the knocking. At that time I was a heavy sleeper, but he managed to wake me. I thought he was dreaming. He was not.
It took a long time for it to sink in. ‘Gone’ didn’t mean ‘run away’, it meant dead. He was sixteen and a half.

Everything passed in a blur, but although first my husband, then I were hospitalized with the shock, we made it through the valley of the shadow of death. Sleep was something that only came as the result of sleeping pills, and then not for long. Two, maybe three hours, then a blessed moment of unawareness before I felt the ton of bricks fall on me. “’Bill’ is dead.” That was the end of sleep. Yet, my husband and I were part of the ‘lucky’ few, the blessed ones whose marriage did not fall apart because of it. In fact, we grew closer as we stumbled through the pain, the agony, and all those guilt feelings.

The wondering ‘if I had done this’ or ‘if I had not done that…’

My husband wrote a poem in the note pages of his Bible. His words can still bring tears to my eyes. As he once said to me, “I have lost my future, not just the past and present. I will never see him married, never have grandchildren from him…”

 

Death of my husband

My husband was never a completely well man. Very few people knew the struggle he had with the pain of a crumbling spine and herniated disks. He did not parade his health problems. It wasn’t the pain that killed him. For years he had been in and out of hospital, sometimes near death, but the doctors could not decide the cause of his lung problems.

I remember now, the pleasure he felt when finally, a diagnosis was reached. So many people had said that it waas all in his mind. But it was not. It was Pulmonary Fibrosing. Or, as they called it then, Fibrosing Alveolitis. Little did we know it was a death sentence. And I am glad of that. There were so many things we did in the last years of his life we would never have attempted had we known how serious, how fatal that lung disease was.

Lung with fibrosing alveolitis
There were times when what was happening to him frightened us, but still, no one told us what was going on inside his lungs.

Not until the last 6 weeks of his life.

 

But that is another story. Suffice it to say, it was something of a shock to be told that his lungs were smothering him.

After a couple of years, when reliving his death became less painful, some of those feelings went into the Prologue of one of the books in the series I am writing. A character asked how he could live with the person who was dying, knowing she was dying, and not knowing how to help.

And still, it continues…

In fact, in the fourth book, published last year, when I came back to it to read it over before sending it to the lovely lady who edits it, I noticed there was a huge bit missing. After the death of a much-loved character, it stopped. The next chapter started months later when all the intense grief was easing.

sign falling off cliff

 

 

It felt as if I had fallen off a cliff.

 

As I puzzled over the manuscript and why it was like that, I realized. I could not have written it before. ‘Killing’ the character off was difficult enough, but exploring the grieving of the various characters her life affected, had obviously been too much for me to look at before then.

With several revisions and many tears, the ‘missing’ part of the book was written.

As for my own grieving

As for my own grieving. Only the one time, after my granny’s death, was I ever angry.

Neither my husband nor I were ever angry with our son, or with God… although people assured us it was okay to be angry with God. One well-meaning church member briefly cut the feet from under us by saying, “God could have prevented it.” Well, I guess He could, but we have all been given free will.

Death and grieving

Death is the end of our human lives. Grieving is part of coping with death. I guess I will go to my grave grieving. But on the other hand, grateful to have had such love in my life.

If you are grieving, accept what is happening. There is no specified order like it says in the books about death and loss. Sometimes you might flip from one to another in a matter of hours. It’s a roller coaster, it will eventually slow down and become acceptance.

There is no ‘getting over’ losing a child, a grandchild, sibling, niece, nephew, or a spouse, and generally, we only have one set of parents. We become used to being without them in our lives, but in losing that person, we have lost part of us. The person who created us, the person we created, or the love of your life and best friend.

There is no right or wrong… unless you steal – as mentioned the customer did at the start of this post.

Tread softly, vulnerable people are easily crushed.

Before you speak… think

Susan

 

Meet Lois, representing women

silhouette of women walking

International Women’s’ Day is almost upon us for another year. Last year, over a four-week period, I featured several women. This year, I introduce you to one. She is fictional. She is Lois, who has been in all four of the Apostle John series from her first appearance in Hold the Faith.
She is my featured woman for International Women’s Day 2017

Why choose quiet, kind, helpful, unassuming Lois? Because, in many ways Lois embodies many women. I have no picture of Lois in my mind, but I know who she is… and she has a backstory that is only hinted at in the books.

As a child, Lois was the victim of abuse… physical and emotional. In the time setting of the series there was no social welfare, no child protection agency, no help. (Well, for Lois there was. She was rescued… but that is in the book, and the backstory available to members of my Reader’s Circle.)

Nowadays there are many agencies to intervene in the cases of child abuse. I have written before about the long-term effects of emotional abuse. Bruises heal, broken bones mend, but emotional pain spreads its tentacles through the life of the person who has been abused. I have experienced some of the effects, and seen it in many others.

During my time as a Psychiatric Nursing Sister I saw many results. Young women who repeatedly tried to commit suicide. (After all, if parents abused them, or close family members did and parents wouldn’t believe the child, obviously the ‘abused’ did not deserve to live.) One woman suffered such abuse she fragmented into multiple personalities.

Back to Lois…
In the series, Lois is not based on any one person. Although she is a fictional, historical person, she is a composite of many women in my life. Not one, a blending of experiences over many years.

silhouette of women walking

Something I read by another older writer… she said she had lived long enough to have had lots of experiences. (I do not remember her exact words, but I connected with what she had written.) I have a vast ‘mental database’ of experiences and when I create a character various aspects of the character is drawn from this ‘database.’ None of the ‘people’ in my series are people I have met, but the traits of many people end up stored in my mind. Somewhere.

Why choose ‘Lois’? She is ordinary. She is a kind, helpful and encouraging person – with people she knows and has learnt to trust. With strangers, she is timid, even a bit afraid. You could say she is introverted, but it is more than introversion – there is some lingering damage there. Oh, and she is in her early thirties. Old to be unmarried in those times.

(You would have to read the books to find out more about Lois and what happens to her.)

However, generally speaking, Lois is like so many women. Hard-working, choosing to be self-sacrificing and much loved by those who know her and appreciate her quiet kindness.

Lois is not a key character in the series… but she is WOMAN.

Praise God for all the unsung, perhaps taken-for-granted women who live their lives caring for families or friends and all that entails, but never receive medals or accolades.

Please take this as your medal.

image of a gold medal

Susan

I invite you to wander around my website and see what my books are about.
(They are fiction, based on researched facts)

A Grumbling Stone

Grumbling stone
Grumbling stone

This follows last week's blog on Trials. I discovered so much about rock tumbling... My imagination took over. The stones were given voices and one grumbled.  

Please enjoy my whimsy!


“I have to go back in the tumbler again,” complained little stone.

 


“We all do,” sympathized the lumpy old stone.
We have to be fined down with all the grades of grit.

stone, large lumpy

“But I have to go back in with the coarse grit! The first one again," grumbled the small stone.
He glowered at the lumpy stone and protested,
          "It’s not fair.”

The lumpy old stone, sighed but did not answer.

Text, Hey!

Hey! I am talking to you. I said, I have to go in again with the coarse grit.”

The lumpy old stone gazed sadly at the smaller stone.
“And you will keep being put back in for the first stage until that big chip is smoothed out.”

“Do we all have to go back with coarse grit?”

“What the gemologist does with each of his stones is nothing to do with another. We have to be tumbled and smoothed until he is pleased with the result.”

“That doesn’t seem fair!” grumbled the little stone. “What about that one?” he asked, pointing to a larger stone who was beginning to show a pattern on the surface.

Overhearing, the half-polished stone asked, “What’s it to you?”

half polished stone drawn into grumbling

“You bumped against me more than the others,” grumbled little stone.

“Maybe you need more bumping,” replied the larger stone.

Some of the other stones decided to join in the grumbling.

“It doesn’t matter how much you grumble, all of us will be put in the tumbler until we are the the way the gemologist wants us to be,” the lumpy stone intervened.

“It looks like you will need a lot of tumbling,” a half-done stone said snidely.

A few of the others snickered.

stone, large lumpy

“I am too big and too hard to be put in with you smaller stones.
I have to wait until there are enough my size and type.”

“Oh, you think you are better than the rest of us, do you?” the little stone accused.

“No, not better. But you are different kinds of stones. If the gemologist put me in the tumbler with you, I would damage you.
I have to wait till the gemologist decides where I fit.”

“But we are not ALL small.”

“No, there needs to be different sizes so that we all bump each other, not tumble in a group.”

“So why can you not be tumbled with us.”

“As I said, I am much too large and hard. I would damage you. The gemologist knows what will suit the purpose.”

“Well, I don’t think it is fair,” little stone protested loudly. “Why should we have to do what the gemologist wants? I’ve had enough!”

“The gemologist knows what he wants each stone to look like. There is a place for all of us. We have been chosen for that purpose."

Harrumph!

"Little stone, you look like you might be a diamond, which is something highly prized by the gemologist.”

The door opened and the sound of feet crossing the floor echoed in the room.

The lumpy old stone looked at the little stone wondering if it would try to roll off the table.

With an abashed glance at the lumpy old stone, little stone rolled back to join the few other stones who were to go back into the tumbler with the coarse grit.

Several months later...

polished stones

Leading Cast

Grumbling stone

Little stone
(Grumbler)

stone, large lumpy

Large, lumpy stone

half polished stone drawn into grumbling

Half-polished stone

Trials

selecting a stone, for trials

Thinking, pondering… for consideration.

“For many are called…”
Matt 22: 14a

Image of stones

 

The second part of the verse above says

“… but few are chosen.”

selecting a stone, for trials

 

Considering the growing number of people on my prayer list, I have been considering. Here’s my conclusion.

Many are called… could be most people.

Few are chosen… Chosen for what?

Trials?

I have discussed this with some people… Looking at the severity of what people are going through, and considering their situation, these trials are tailor-made for the people going through them.

The trials are tough!


Many years ago I met someone who did rock-polishing, which is what came to mind when I considered all the trials my brethren in the faith were going through.

Since I only had a vague memory of the process of rock-polishing or tumbling, I looked it up.

It is a much more complex process than I thought.

One site had information that a variety of shapes and sizes was needed so that the rocks would tumble and bump against each other.

My tangential thinking can take me off in many analogies here, but I won’t burden you with my imaginings.

Out of all those stones, some are chosen… and picked over again. The selected ones are put in the tumbler with the coarse grit and water… then tumbled for seven days! At the end of the tumbling, the stones are removed and the grit washed off. The tumbler is also washed free of the grit. According to some sites, if some of the stones are not what the person doing the tumbling had in mind… they go back into the tumbler with the coarse grit.

When the stones are to the person’s satisfaction (and all washed and free of grit) – back they go again for more polishing with slightly finer grit. Then later with finer grit again… then some people choose to tumble the stones with a very fine grit – called pre-polish.

One analogy I cannot help sharing is how much like life – and our trials, this process is!

The video I found on YouTube is a short one, no speaking – but have a look at all the packets of grit. Each of those is used for seven days.

(I counted six or so bags of grit!)

It is a slow process to make something beautiful from those stones!

Which leads me off on another tangent… As a child in Scotland, there was an old ‘children’s’ hymn.  It might have been ‘inspired’ by this scripture…

And the LORD their God will save them in that day As the flock of His people; For they are as the stones of a crown, Sparkling in His land.
Zechariah 9:16

The hymn is called ‘When He Cometh’. (Sometimes shortened to Jewels)

The first verse says,

When He cometh, when He cometh,

 To make up His jewels,

 All His jewels, precious jewels,

 His loved and His own.

The second verse says,

2 He will gather, He will gather

 The gems for His kingdom,

 All the pure ones, all the bright ones,

 His loved and His own

Is this what all our trials are? Are we being polished to be gems?

(There are several versions of this old-fashioned hymn on YouTube.
Here is the full hymn
https://www.youtube.com/watch?v=PIVQXIk-1lA

Interesting thought, and a challenge to look at our trials in this way.

And remember the Bible verse that says…

“Woe to him who strives with his Maker! Let the potsherd strive with the potsherds of the earth! Shall the clay say to him who forms it, ‘What are you making?’ Or shall your handiwork say, ‘He has no hands’?
Isa 45:9 NKJV

 

Trials are making us precious gems.

Sharing some thoughts

Susan

I invite you to wander around my website and see what my books are about.
(They are fiction, based on researched facts)