Lung Disease

person with lung disease on oxygen

Lung disease is not always caused by our own bad habits. There are people with Cystic Fibrosis, COPD, Lung Cancer, Pulmonary Fibrosis, Pulmonary Arterial Hypertension, Asthma, and Mesothelioma. In fact, according to the Lung Foundation there are over thirty types of lung disease.

https://lungfoundation.com.au/

Whether or not a person has smoked, he or she can suffer one of the many lung diseases.

The Stigma of Lung Disease

Over 40% of people with lung disease feel there is a stigma from the view that lung diseases are self-inflicted and smoking-related.
Not always true.

However, from my experience using oxygen, I would have to agree with that statement. There is a stigma. The reaction of some people when I am out, usually in a shopping centre, is varied. Some people are embarrassed and look away, a few smile, while others clearly are repelled by the sight of me using oxygen.

For most people with lung disease, before oxygen therapy, breathing could be likened to trying to breathe through a plastic bag.

lung disease struggle to breathe

Oxygen and Lung Disease

Not everyone who has lung disease uses oxygen. The criteria for being prescribed oxygen is much more than breathlessness. There is a series of tests which are done to assess whether or not oxygen will help. If it will help, a respiratory physician will determine how often and how much oxygen will need to be used.

I need oxygen 24/7, and this is described as palliative care. However, on ‘good’ days I have a reasonably normal life. Getting used to trailing around an 18 metre (59 foot) tube was a challenge and is quite a ‘trip hazard.’ But it is one that can be met.

(I share my experiences, the challenges and solutions in Living at the end of an Oxygen Tube.)

oxygen tubing

Use it or lose it

This common term really is true when it comes to living with chronic illness whether it be lung disease, back problems, or many of the debilitating conditions that make us reluctant to move.

It is not easy to make the effort some days. Especially the days when it is a struggle to breathe, or when the herniated disks make walking difficult.

Attitude

This is the key – the attitude of the person with lung disease, and those who care for them. It is natural to grieve the loss of ability, but it is not wise to become bogged down in self-pity. And it happens. However, life with lung disease, whether on oxygen or not, can be quite fulfilling. Some days it is more of a challenge than others. But rise to the challenge. And if you are someone who supports/cares for someone with one of the many varieties of this disease, recognize the difficulties, don’t gloss over them. Then encourage your ‘someone’ to become involved… join a club, write an article, or take up a hobby. And be aware, there will be many days when going outside the home is not possible.

However, it is true… Life with lung disease can be fulfilling.

Susan

About the writer:

Susan M B Preston is the author of several award-winning Biblical fiction novels.

The Apostle John Series

Hold the Faith (1st in the series. Award winner)

Grow in Grace (2nd in the series)

Light of Truth (3rd in the series. Award winner)

Keep the Flame (4th in the series. Double Award winner)

Hell Shall Not Prevail (5th in the Apostle John Series.)

Novellas:

After the Thirty Days

No Evil Shall Befall You

Clash of Faiths

Shadow of the Past (coming soon.)

Non- Fiction:

Living at the end of an Oxygen Tube.

Guess what. I feel human

feel human when you meet others

I feel human for the first time in eighteen months or more. If you think that an odd thing to say, then praise God you have never lived with a life-limiting disease. There is a hidden cost… some life-limiting diseases are not obvious so they bring with the disease/limitation a psychological challenge of dealing with others who do not think they are ill. Now that I am on oxygen full time I have an obvious condition, that was not always so… as others have shared.

Since writing the blogs on living on oxygen, I have heard from people who are not on oxygen, but can relate to the isolation that chronic illness or life-limiting diseases has on those of us in these categories. Some are isolated by what is called a ‘compromised immune system,’ and that makes us very vulnerable to infections that others could shrug off.

Sadly, many – other than the sufferers – do not understand the threat an infection poses and do not quarantine themselves when they have an infectious disease.

Another isolating factor...

…Is  the effect strong fragrances have on people with lung disease. Sadly, people do not always believe this, which leads to more reason to isolate ourselves. It is easier to avoid the situations than try to explain… and annoy others.

The effects summarized greatly…

“Scents enter our bodies through our skin and our lungs. The chemicals in scents can cause many different reactions. Even products containing natural plant extracts can cause allergic reactions in some people.”
Read more…
https://www.lung.ca/lung-health/air-quality/indoor-air-quality/scents

And on household products…
https://www.lung.org/our-initiatives/healthy-air/indoor/indoor-air-pollutants/cleaning-supplies-household-chem.html

To be honest, I do not think you will understand if even if you have some of these problems mentioned, but have regular contact with people outside the medical profession.

Hopefully, I can explain.

I have lung disease, heart disease, adverse reaction to fragrances, and I am socially isolated.

So, why did I feel human This week?

Because I went out socially, not to a clinic or doctor appointment, nor for scans, tests or medical reviews.

If you have read any of my blogs on the subject, you will know that I live my life attached to a tube… an oxygen tube.
field marshall hat, planning abilityIt has been a learning curve adjusting to this way of life, and it has been very isolating. (I mention in my book, “Living at the end of an Oxygen Tube” that it takes the planning abilities of a 5-star General, or Field Marshall for even a simple trip out.)

A care agency supplied a support worker to take me out for three hours. As I said, not to an appointment, but to catch up with awesome people for coffee. I knew how long my batteries last on my ‘flow rate’ and took the number I would need.

Now, this does not mean I do not appreciate support I receive from family in the UK, the ‘digital’ support I receive from far-away friends and brethren, I do, and it helps me cope. So, also does my contact with ‘The Friendship Club,’ but the ladies I met up with this week… well, over the years, until I was unable to attend,  we supported and encouraged each other. We knew many of the other members well, and some more closely than others.

cartoon man listening to music

I feel human

I feel human, music note

Age is not the only reason for being, or becoming housebound. Perhaps it is a back problem,  and please do not dismiss ‘back problems’ or other mobility issue because they are serious and affect our ability to go out. On the other hand, it could be heart problems, continence problems, or grief issues, or even a loss of confidence in going out. Sometimes it is financial, lack of transport, friends died, family moved away, or some of the reasons mentioned at the start. There are people with various auto-immune diseases and those people are much more vulnerable to infections. Some of the medications for heart and lung disease reduce the body’s ability to fight off infections. So…

  • It does not take long for the world to shrink to the size of your home.
  • Sometimes it feels safer to stay home and try to avoid infections.
  • There are times when it is so difficult to walk… pain, oxygen saturation dropping dangerously low.
  • It is easy to ‘fall through the cracks’ when everyone else seems so busy.
  • For all those reasons and more it is easy to stay at home. To isolate. The longer the door is closed on the outside world, the harder it is to go out.

Walking groups are friendly places

Well, the one I went to is…

Mall walking group

That is where I went earlier this week… to a walking group I used to belong to, but have been unable to attend since August 2017.

This one is a mall-walking group and the members have varying abilities. Some, like I did the other day, attend for the social support and friendship as well as exercise. Many enjoy walking in a safe environment while others are ‘champion walkers’ – but all are friendly.

It takes courage

When a person has been isolated socially for a long time, it can be frightening to consider going out among ‘other humans.’  If you fit this situation…

  • Recognise the reason for the fear/anxiety
  • Is there a way you can reduce it?
    • I contacted people I knew in the walking group when I knew I could definitely attend.
    • Estimate what you will need. Is it oxygen? Is it medication? Is it continence aids? If necessary, make sure you have an angina spray (that is not out of date) in your handbag.
    • What do you need to do to reduce your stress?

Go forth, face your anxiety, and enjoy being human, and talking to other human beings!

Susan

I feel human!

Home Oxygen… the Beginning

Oxygen flow control

The technician who brought my home oxygen set it all up, set the flow rate on the machine and told me not to change it.

He handed me a cannula with nasal prongs on the end of a long green tube connected to the machine. The oxygen was flowing, but I really had no idea how to put the ‘headset’ on.

While I was working that out, he set up the ambulatory oxygen cylinder (for going out) and warned me not to touch the button to change the flow rate.

With what felt like an encyclopedia of information in a foreign language he had me sign a form, handed me a booklet and was gone.

My home oxygen therapy had begun

I had prongs in my nostrils, part of  a cannula attached to a long green tube that followed me wherever I went. That was only the beginning of the learning curve to living at the end of an oxygen tube.

It also had a habit of ‘catching’ itself on the strangest places and I would come to an abrupt halt when my nose jarred.

I felt like Manasseh in the Bible.

Manasseh with hook through his nose

So the LORD brought against them the military commanders of the king of Assyria, who captured Manasseh, put a hook in his nose, bound him with bronze shackles, and took him to Babylon.
2 Chronicles 33: 11 Berean Study Bible

(I was not bound by bronze shackles though.)

All the same I was ‘tethered’ – I could go no further than my tube allowed.

Yes, the oxygen was there to help me, and it did, and does… but I had no idea of the learning curve that would be required of me.

There is a trick to cooperating with an oxygen tube.

  • Have enough tube to reach all the places in your home you need to go normally, wind up the excess. The more that is out the more risk of tripping.
  • If you are not carrying something, wind up the tube as you go… and learn to be aware of where the tube is all the time.

When I wrote the earlier blog about living on oxygen, I didn’t know it, I was only at the start of the learning curve.

As well as things to frustrate a person with tubes up the nose 24/7 – especially when the tube catches and yanks my nose, there are things to laugh about too… and things to wonder about also.

(I wonder how long it took Manasseh to get used to the hook in his nose.) Just one of those funny wonderings a writer’s mind can wander along.

The learning curve

… Is both physical and psychological and your home will be invaded by equipment that will help you to breathe but can be difficult to get used to having around. Your days (and nights) of quiet are over. The oxygen concentrator is noisy – I read somewhere 40 to 50 decibels… and that is a constant background noise when using the oxygen.

oxygen concentrator and oxygen cyclinders

There is a great deal to adjust to, and to learn, but when you get used to trailing your tube around, you will start to notice the health benefits.

I would have liked to have talked to someone in the same position, but that is a little difficult unless you find out about a support group of people with similar conditions.  If you hear of such a group, go, even though it takes a lot of planning even for a short trip.

I mastered the steep part of the  learning curve, and am plodding through the smaller, daily, challenges.

Books on living with home oxygen

The only books I could find were written by doctors or other health professionals, but I did not want to know all the technical stuff, just what I could do and could not do. I wanted a book written by someone who had walked the journey before me.

Because I could find none, I wrote my own. I am publishing it for others like me, for the people who come to help, but have no training.

So many people have encouraged me to write this, and helped me with the project.

Connie, if you read this… thank you, it’s for you too. And thank you John and Mariela for a much better cover than the one I paid for,

Currently my website is ‘feeling fragile’ so I am unwilling to create another page as I might have to rebuild the website.

If you want to see what the cover looks like, as well as the blurb – you will find it on Amazon.

Living at the End of an Oxygen Tube

Some days at the start it felt as if I was being sucked into a vortex and that is what the cover is meant to represent.

So, for this week… 

God bless and be safe!

Susan

Awards, memories, and oxygen

Awards, memories and oxygen

When you live connected to an oxygen machine, little pleasures are great, big surprises are better.

There was a big surprise this year. Keep the Flame was Solo Medalist in the New Apple Book Awards, 2018. It is the fourth book in the Apostle John Series, and I looked back over the years to the writing of the first book.

My husband died when book three in the series was almost finished. When he was in the hospice he told me “hurry up and finish Light of Truth if you want me to read it.” He was as invested in the people in the series as I was.

Such a lot has happened since then. He would be surprised at my life now, having to live my life attached to oxygen machines. I also think he would be pleased at the success those books have achieved. His encouragement spurred me on, then the characters needed their stories finished.

Looking back at the series

It is 92 AD, and the Apostle John still lives! The Temple where he walked with Jesus and the other disciples no longer exists. It was destroyed by the Romans in 70 AD

John is proof that the sect the Jewish authorities had hoped would die following the crucifixion of their leader, did not happen.

The temple that was (dare I say it) almost like an idol to the Jews of the time.

Many of those early followers of the ‘Way’, later to be called ‘Christians’ in a derogatory term, had fled under the persecution from the Jews. With the destruction of the temple and Jerusalem, came the Diaspora and many escaping Jews joined their fellow Jews in various cities around the Roman Empire.

The fiction calculations for the book that became a series

Using biblical principles I worked out that John, the apostle, could have been married. (Most people do not believe he was, but I found some interesting opinions on his wife from other websites when researching the book.) I ignored them, and decided on a fictional wife, who had died.

Working out his age in 92 AD was relatively simple, so calculating the age of any children, and their children was again worked out using the knowledge of the age when Jewish men married.

Daughters were married off far earlier, often soon after puberty, but men had to be mature, settled, and able to support a wife and family.

Thus, although the Apostle John is a key figure in the series of books, he is not the main character. Readers have identified Benjamin, the great-grandson I ‘gave’ John, as the ‘hero’ of the series.

The setting of the series

I chose Ephesus for the location as most of the evidence pointed that way.

Someone I knew declined to show any interest in the book because her pet theory (which I did consider) was that John had gone to England.

Historically, I could not find enough evidence to support that, so the setting was Ephesus.

As a child I loved history as a class subject, and as a young person, I devoured books on the Tudors, some of the French ancestry, Scottish history and a long series on the Popes. The Medici and Borgia families fascinated me.

My home town of Peebles, in the Scottish Borders is not only a beautiful town, but one steeped in history… and the birthplace of many famous people.

But that is another story.

The Apostle John Series

Never did it  occur to me that I would be writing Christian, historical fiction.

I wrote manuals to help my computer classes. But when listening to a detailed Bible study on the gospel of John, I wondered. “Could that be true?” and so started a long trail of research, which does become addictive.

What I found were the people and culture of the times in which these folks in the Bible lived! People who had been just stories until then. I found out what it was like living under Roman rule, being hated by Jews, Romans and pagans.

They were all people, and they all had trials and challenges.
(Which is why I chose to write from the omniscient view.)

It seems I succeeded in showing their humanity, because I have emails and reviews saying that.
(Although many reviews disappeared in the last Amazon algorithm review purge.)

There is a time to stop a series though, and that has come. A companion series, this time of novellas, completes the stories of the ‘other’ characters. The fourth and final one is ‘waiting in the wings.’

Researching the series

I consulted many versions of the Bible, Josephus (a former Pharisee, and prone to exaggeration according to many commentators). Lionel Casson’s ‘Travels in the Ancient World’ was amusing in parts.

I subscribe to Biblical Archaeological research newsletters and Biblical History newsletters.

Suetonius gives insights into the Roman emperors he writes about, as well as various Roman festivals and everything Roman. I have a shelf full of books and hard drives with gigabytes of research

The Awards my husband never knew about

 Hold the Faith – Finalist in Readers’ Favorite International Book Awards.

Thanks to some special friends, I went to the Award ceremony in Miami, Florida.

Book 3 – The Light of Truth – Finalist in the IAN Awards.

(My husband died before I solved something that needed to happen was worked out so he never knew the end.)

Book 4 Keep the Flame – Readers’ Favorite Finalist for 2017 (Yes, I went back to Miami.)

Then this year I was told it was chosen as the Solo Medalist in the 2018 New Apple Literary Awards.

I look forward to telling him.

Susan

Cooking now, then and way before then.

cooking, assembling spices

Cooking is now quite a challenge for me. Oxygen and flames don’t mix. This means being organized. Assemble everything beforehand, turn off the oxygen and light the gas. That is what I was doing earlier this week, a bit miffed that I could no longer multi-task and continue my preparations while the gas burner was lit.

As I was working, I was thinking.

Cooking a curry

Now – I buy ground spices. (I used to have a small grinder, but now I buy the spices.)

Then – In my mother’s day, I don’t remember eating a curry, but if curry flavoring was needed, this is what was on option.

Way before then – I doubt the Biblical cooks made curries, but they certainly made spicy meals. 

spices for cooking curry

They would have had to walk to the market, buy what they wanted, bring it home and grind it… probably with a hand mill. Spices were expensive so only a small quantity at a time would be bought.

Cooking Then

Growing up in the cold climate of Scotland, my meals as a child were starchy. Bread, bread rolls (they were a treat) and potato soup. (It was made with root vegetables, primarily potatoes.)

(Now, if I am able to keep the oxygen off, there are a lot more options.)

Cooking way before then

I did a great deal of research about this so that my books were as accurate as possible. Primarily, people of the New Testament ate vegetables, usually cooked in a stew, and often flavored with spices.

Most people probably ate meat only a few times a year, generally when animals were slaughtered for religious sacrifices, weddings or other special family celebrations or visits.

(In Hold the Faith, the celebratory meal after Benjamin’s baptism was chicken. What was left over was added to the next day’s vegetable stew.)

Cleaning and preparing the vegetables.

They were washed, but homes back then did not have indoor taps. Water had to be fetched from a well, so people would have been ‘water-wise.’

When vegetables were cleaned, they were cut, or chopped and put in a clay pot. Meals were generally cooked in clay pots in either clay ovens, or ovens made from earth. The most common way of cooking food was by boiling.

ancient cooking pot

Cooking was time consuming

Bread was a staple food.

It took possibly 2-3 hours of hard labor every day to make enough to feed a family with five. (In Hold the Faith there were six adults living in the home.)

Once the dough was made, it was cooked in different ways. One way was to cook it on the hot stones of a cooking fire.  Then there was the ‘jar’ oven.’ This was a huge clay pot that was smaller at the opening in the top; a fire was started on the inside to get it hot, and the dough was put against the outer part to cook. The pit-oven was a pottery lined hole in the ground that was heated with a fire that was put aside, and the dough was baked on top of the hot clay.

cooking bread in jar oven

Cooking now

So, by the time I pondered all of this, I realized how blessed I am. I have a gas cooker, a refrigerator and a freezer. I also have a microwave.

All of these, plus a telephone (even a land-line one) would have been very useful to warn of unexpected guests being brought home. (Again, as happened in Hold the Faith, and other books in the series.)

More musings

Susan

Hold the Faith is the first in a series of five Christian, historical fiction novels. They are set in the late 1st century AD and are followed by four novellas, (only three finished.) The novellas follow the lives of some of the ‘side’ characters.

I am asking people to buy, or recommend these books as I am currently fundraising for a Portable Oxygen Concentrator. Please ignore the Amazon review status. Many of my reviews have fallen victim to the unknown bot that Amazon uses to remove what they consider reviews from friends, family, or purchased reviews. Some people who have told me their reviews have been removed, I have never met, nor am I likely to meet them. Still, I think even Amazon does not know how this algorithm of theirs works.

Link to the fund-raising page, so that you may read about my current setup and my goal.

Thank you.

Fund-raising page for POC

Living with oxygen 24/7

let us fly

It was slow, almost unnoticeable at first, my need for oxygen. However, my difficulty climbing stairs, or walking uphill eventually increased until even walking on even ground made me breathless.

Then dressing or undressing meant I had to have a ‘break,’ a sit down, and making the bed was done in stages.

Then two things happened. My physiotherapist noticed my difficulty and took me on a six-minute walk test. We did not go far. My oxygen levels dropped quickly. Her comment… ‘You need to be on oxygen’ and she sent the result to my doctor who was on holiday at the time.

Then, rather reluctantly, I took my son’s advice and underwent a sleep study. The result of that had the person giving me the results say I needed to see the doctor immediately, my oxygen levels were dangerously low. She had me ring the surgery from her office.

In the metropolitan area a General Practitioner cannot prescribe oxygen so I was referred to the hospital. In the meantime, so that I could be factual at the appointment I bought an oximeter (Measures oxygen levels) and discovered my oxygen level is normally low, exercise takes it to an extremely low level.

Start of the journey to home oxygen

Well, first there was a hospital appointment to Pulmonary Physiology. I was there last year for a flight simulation test, and I had spent a lot of time there in previous years with my late husband. He had the tests done every six months. 

I also had arterial blood taken. It’s painful. (Mainly because the artery is deep and the doctor has to find it.)

“An arterial-blood gas (ABG) test measures the amounts of arterial gases, such as oxygen and carbon dioxide. An ABG test requires that a small volume of blood be drawn from the radial artery with a syringe and a thin needle…”
Wikipedia

oxygen testing blood gases

Then came all the breathing tests. At least nowadays the ‘box’ the patient is shut in for one of the tests is clear.

oxygen breathing test

Yes, a peg on the nose is used.

Oxygen at home

oxygen concentrator and oxygen cyclinders

A truck delivered an oxygen concentrator, three medium sized oxygen cylinders – a word about them later – and a large one in case the power goes out.

The medium-sized ones are for going out. Portable is not a word I would have used. At five kg it is a challenge to lift, never mind to put in my four-wheel walker.

Living alone, the eighteen metre (fifty-nine feet) tubing is reasonably easy to not trip. Roll it up going one way and unroll it the other way.

Bed, well that’s more of a problem. I have to make sure the tubing crosses the bed but is not in the way on the floor if I have to get up in the dark.

Breathing...

This is ‘sneezin’ season here, and since there was a lot of rain all the trees, shrubs and ‘the bush’ is alive and beautiful with blossoms. (Pollen-causing blossom.)

When my nose runs or is blocked, the oxygen cannot get through. Then there are the nosebleeds. (I won’t show you the pile of tissues from the last nosebleed. Blood thinners clearly aggravate the problem.)

So, living with oxygen is a challenge

As my home help said, ‘You think it is going to be simple, and you are going to be able to breathe easily, but it’s not, is it?”

No, it is not, but it is not impossible. It is just a question of finding work-arounds – and paying for home delivery on shopping.

The first few hours with the noisy machine purring, hissing and popping away had me glowering at it from my study and wondering how much electricity it was chewing up. It is on twenty-four hours.

There is a whole list of safety rules:

Clean the filter once a week.

Keep the oxygen bottles away from any source of heat.

Stay three metres from my gas cooker. So, it has to be briefly turned off so I can cook.

Stay away from smokers. There are rules in Australia about not smoking near entrances to shopping centres, not allowed at all on hospital grounds – but smokers are not good at keeping the rules. Not having a go at smokers, for many it is stress relief as well as addiction. But if that ‘lady’ had kept coming at me the other day – would she have blown us both up? Maybe. There were nine hours of oxygen in that bottle. When I asked her to stay away because I was using oxygen, there was a torrent of abuse directed at me.

There is a book with all the do’s and don’ts, but it is the simple daily things, like showering and hair-washing, bed making and simple household chores which contribute to the learning curve.

Another learning challenge

Susan

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