Life as a Carer

Life of a Carer is lonely

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. And if the person being cared for is on supplemental oxygen, will the cylinder have enough oxygen to last until the return home?

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

Carers often have to learn…

Carer learning
  • 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. (If possible, talk about the information needed with the person you are caring for and write the questions down… and take them with you.)

Contact with other Carers. 

This can be by phone, by arranging respite for even a few hours and meeting others, or another, who is in a similar position to yours. 

Some ideas on this site

My experience as a Carer

One of my huge frustrations, and my late husband’s also, was that the specialist/doctor or whoever 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 saw deterioration in his condition, he did not.

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

Long list

Something else a Carer needs – is understanding – or at least acceptance.

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

  • They cannot make arrangements to have friends come to visit, or go to visit them. So 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 grey 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 offence if they do.
  • Be a person they can trust with their feelings.

 

The life of a Carer is one of service

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.

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 near people. It is a lonely place to be.

Remember, there are some options and help

 https://www.carergateway.gov.au/help-advice/getting-help#a3

Susan

PS

I had to give in and let my doctor send me in to the hospital.

This post was written for last week, the 17th October, 2020 but after discharge I was still unwell and unable to sit at the computer for long enough to upload it. My apologies.

Staying out of Hospital, just!

staying out of hospital, had enough of this

As the title says.. I am ‘staying out of hospital… just.’

This is why there was no Sunday post last Sunday. 

My doctor has increased medications and will be ringing me twice a day. No improvement, and it will be hospital. 

Staying out of hospital for this reason

And this is the reason I do not want to go to hospital! Well, one of them.

My doctor’s reason is that I am too vulnerable and could ‘catch something else.”

I very much appreciate her!

I am not a ‘fan’ of prednisone. It has too many side effects, but in the short term it seems to be working. Although it is boring to so what I am told… as little as possible, my oxygen sats are not dropping as low as they were, and that’s when walking a short distance in my home.

By the way, I started separating the non-fiction oxygen writings to another website. It’s not finished by a long way, but it’s started.

You can see it here… https://smpreston.com/

That’s it for now, thank you for reading.

God bless,

Susan

Back soon

Back soon

I will be back soon…blogging, and writing my new series.

First I have to recover more energy and as much strength as will be possible.

Back soon - from where

Well, I have to admit I will not be back to ‘normal’ health. I had to adjust to a  ‘new normal.’ 

However in the last month I have been hospitalised twice, but now with treatment at home am starting to feel better. How long that will last for is not in my hands. Like many with serious chronic/life-threatening conditions, I plod on.

But in the last two days it looks as if this ‘exacerbation’ is turning around. Praise God… well, I do. 

So, pop back and have a look soon. I will be back soon… I hope.

Now comes the thunder. So turn off time.

God bless 

Susan

Face Masks or Nasal Prongs?

Face masks or nasal prongs blog

What is worse, having to wear those face masks or nasal prongs carrying oxygen? To be honest, it was only when I heard a friend talk about the frustration of having to wear a face mask that I made the comparison. Well, with one thing that was mentioned… the loops around the ear hurting. That is something I can relate to. I wear nasal prongs twenty-four hours a day, every day, and have done for almost two years. Behind the ears can become painful.

So, which is worse?

Wearing face masks or nasal prongs

First, a face mask

For someone who is claustrophobic, the face mask might be worse.

Conversing while wearing a face mask is difficult, and I have seen people pull them down to talk.
This is against the guidelines, but then – are people told the way to use them safely and effectively?
Some hints here… https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/how-to-wear-cloth-face-coverings.html

If sore ears from the elastic loops is a problem, then the ideas at this site might inspire you https://www.health.com/condition/infectious-diseases/coronavirus/how-to-stop-face-mask-irritating-ears

Some have problems if they wear the mask for most of the day because, if worn properly’ they breathe in their own CO2

Speaking as a person who is partially deaf, if I cannot see your lips when you speak, I cannot hear what you are saying.

The upside of the face mask… when you are at home, or other safe area, it can be removed.

Nasal prongs

face masks or nasal prongs, the prongs

There are several categories of users of nasal prongs. Basically, these are…

  1. Using oxygen via nasal prongs only on exertion
  2. Only at night
  3. When needed
  4. Sixteen hours or more per day
  5. Continuously

I fit the last category, and that’s where I related to the comment about the sore ears. Mostly, my ears are fine, but there are many types of   nasal prongs and some types hurt my ears. Plastic are the most difficult to cope with because they are hard to begin with. Soft vinyl is easier on the ears (and the nose.) Then there are ‘straight’ prongs or ‘curved’ prongs. (I discuss all these in the Memoir/Help guide Living at the end of an Oxygen Tube.)

Check it out here

When it all comes down to it… the best of these aids, face mask or nasal prongs, is the one you can take off at the end of the day and walk away without.

Some, like me, are stuck with the nasal prongs. But then the ‘upside’ of that is… it’s improving my life.

When all this is over, the face masks will not be necessary. But those ‘doing it tough,’ for whatever reason, will still be doing it tough. https://www.susanprestonauthor.com/covid19-doing-it-tough/

Let’s have a kindness day,

Susan

By the way, the biggest problem I had with the face mask – my spectacles steamed up.

COVID19 – Doing it Tough

COVID 19 doing it tough

Doing it tough applies to so many people and groups these days. Businesses, especially small ones are doing it tough. Of course that flows on to the people they employ, and there are a vast number (putting it mildly) of unemployed because of COVID 19. Surprisingly, to me ‘cos I never thought of it, sports players are doing it tough. They cannot play sports or train as a team ‘live.’

As time goes on, so many people are complaining of social isolation… sorry, I don’t mean to offend, but probably will. Beneath the layers of complaints are some groups of people I know of, for whom this is not a new problem.

Veterans are doing it tough

doing it tough, soldier

I have no personal experience of a veteran’s life, but since becoming aware of the problems, I have read some stories. The following comment, sadly, epitomizes people’s self-centeredness. It is shown so poignantly by a comment from a young veteran.

“I was watching the news one day and it was some trivial stuff about the price of fuel. I said to my dad, ‘I don’t get it, why is everyone so up in arms about the price of fuel when on the other side of the world there are people literally dying and no one gives a hoot?’ Dad turned around and goes, ‘Because this is their world’, and it just blew my mind. When he said that I realised that it was true, that deploying to warlike operations or coming back from war, no-one really gave a crap.”

Whole article here https://www.abc.net.au/news/2017-04-25/being-a-war-veteran-at-27/8467046

Think about it for a moment, and when you have thought, if you pray, then say a prayer for these people. If you are an employer, consider hiring a veteran.

Others doing it tough

Some, by ‘virtue’ of caring for the vulnerable, have to ‘self-isolate’ as a matter of course. I have a dear friend in this position. Her adult daughter is in the ‘high vulnerability’ category. She has had a serious health condition since she was in her teens. Now, she is more than twice that age and has to be extremely careful. Her mother has to self-isolate to protect her.

Another friend is a Carer for a vulnerable young man and has to self-isolate to protect him.

 

slave to age

People over a certain age are classified as being vulnerable, and in the ‘special category’ that others are supposed to respect. Most, people do, but others, thinking they will brighten up the lonely life of a friend, or acquaintance, ignore the warning. In spite of their good intentions, they are putting someone at risk.

Then there are ‘us.’

People with serious health problems whose lifestyle is isolated. Example…

My late husband and I suffer(ed) fragrance allergies. In those days it was seen as us ‘being funny,’ or exaggerating a dislike. Let me assure you, I used to like perfume, and my late husband used to like his aftershave. These were some of the many products we had to give up… and avoid people who would not respect our health conditions. It is a health condition.
https://www.fragrancex.com/blog/fragrance-sensitivity/

https://www.susanprestonauthor.com/fragrance-sensitivity-is-a-real-condition/

So many losses.

  • Our own lifestyle changes
  • Not being able to attend church any more
  • Nor could we attend movie or theatre performances
  • Even public transport became a nightmare.

It seemed that we became problems to our own families.

Another category

This has been brought to the front of my mind when I saw so many complaints from Facebook ‘friends.’ So many complaints about social isolation!

Some people no longer have a life! COVID 19 claimed their lives, and left their families grieving. Who cares about the people who have lost family members to this ‘plague?’

Then there are are many like me. Alone, chronically ill, isolated.

Since my husband died, over six years ago, this – and other ‘special’ times of year, I have had to celebrate alone.

Then, since my health took a ‘dive’ and I ended up needing an increasing flow rate of oxygen over the twenty-four hours a day I require it, I have been self-isolated. What is it the Americans say? ‘Suck it up.” Not quite sure what that means, but it sounds like what I have had to learn to do. Make the best of what I have, look at what I can do, and don’t bother complaining.

Most people are too focused on their own lives and difficulties to be interested in the lives of people like me, permanently in ‘lockdown.’

I am not insensitive to the difficulties of those unused to this way of life!

And I do pray for them to be able to cope with the separation. 

But when all of this is over,  their lives will continue.

The lives of people like me and those others mentioned in this blog will continue on in isolation.

This is not meant to offend, although I am afraid it might, and it is not the post I had intended for this week. However, I guess reading all those complaints about how difficult life is under these restrictions stirred me up.

doing it tough, woman alone

Closing thoughts… these restrictions might be saving lives… perhaps the life of one of your dear family members.

I hope so,

God bless

Susan

Slaves to a System

Slaves to a system

Slaves? Sadly, yes. We are all slaves to some system or other. Can you identify?

It might be to…

  • Debt
  • Your workplace
  • An addiction
  • Your health

There are lots more that could be added. Such as some of us are slaves because of age. What does that mean? No longer being able to do the tasks, or enjoy the pleasures you once had.

Slaves to other people’s opinion.

Over the years I have known many people with what are now called ‘hidden illnesses.’

These includes chronic physical conditions such as arthritis, asthma, diabetes, fibromyalgia, and others including brain injury after trauma. It can be very difficult for sufferers of these conditions who, in other’s eyes, have nothing wrong.

I thought the idea at the link below an excellent one.

https://www.headway.org.uk/news-and-campaigns/news/2019/sunflower-lanyards-take-off-for-passengers-with-hidden-disabilities/

Then we have those who think the elderly, especially if they are chronically ill, should be given a ‘death pill’ at a certain age. (Honestly, I read a discussion about that online.)

I am a slave to aged care

slave to age

When we are in the aged care system, it seems like it is the ‘luck of the draw’ whether or not you receive the help needed.

My several ‘life-limiting’ conditions are managed, albeit with a bit of difficulty some days, but I have one ‘condition’ that is either not believed, or not understood. A very strong sensitivity to fragrances. As I blogged about once before, Fragrance Sensitivity is a Real Condition https://www.susanprestonauthor.com/fragrance-sensitivity-is-a-real-condition/

My serious sensitivity to fragrances has cost me a home care provider. (They could not provide me with a carer who  was willing to not wear fragrance.)

So, what am I a slave to?

The sensitivity, or people’s opinions about whether I am or not?

My home is one of the few things in my life I have control over. Fragrance sensitivity is life-limiting in a different way from my ‘will-end-up-dying’ from the other conditions.  There are so many place I can no longer go… cinema, theatre, public transport, celebrations too because other people will wear some variety of fragrance. It’s worse than having the coronavirus… that will finish, the fragrance sensitivity is something that sufferers are stuck with. Some things can be controlled in my environment, but when other people come into my home wearing something that sets off my ‘allergies’ it is a nightmare to endure… and also life-threatening because I cannot receive the oxygen I need through my nasal prongs when suffering allergic rhinitis.

And if the person knows I am fragrance sensitive but chooses to ignore it – well, isn’t that a form of elder abuse?

Read the information at the links below if you have the time. Perhaps it will open your eyes, or perhaps not.

https://www.news-medical.net/health/Perfume-Allergy.aspx

https://www.health.com/condition/allergy/fragrance-sensitivity-health-effects

https://www.healthdirect.gov.au/blog/perfume-stinks-how-fragrances-can-affect-health

Some people are kind, others are rude. I have met, and had to deal with people from both ends of the spectrum and at various points in between.

What are you enslaved to?

  • Debt
  • Your workplace
  • An addiction
  • Your health

To some extent, most of these can be ‘worked on.’ Age is debatable, but the hardest to deal with is other people’s fixed opinions and refusal to consider anything but their own opinion.

Something to think about.

Susan

Not giving up, giving

Coronavirus – what do we know

Coronavirus threat

The first death from ‘the’ coronavirus has just been recorded in Western Australia First Australian death

The man was in the same hospital I was in last week. Am I panicking? No. In fact there is a great deal of somewhat confusing information about it, depending upon which source you read, listen to, or watch on TV.

About coronavirus

Coronaviruses are a large family of viruses which may cause illness in animals or humans.  In humans, several coronaviruses are known to cause respiratory infections ranging from the common cold to more severe diseases such as Middle East Respiratory Syndrome (MERS) and Severe Acute Respiratory Syndrome (SARS). The most recently discovered coronavirus causes coronavirus disease COVID-19.
https://www.who.int/news-room/q-a-detail/q-a-coronaviruses

There is a lot more information at that site if you want to find out more.

How dangerous is this ‘new’ strain of coronavirus?

Simple answer…

Authorities say “we do not know enough yet and will not know until more data becomes available.”

Quarantine

One thing that seems clear is that over the years we have lost the knowledge, or motivation, to quarantine ourselves, or a disease. Once upon a time parents ‘quarantined’ a child with an infectious disease. In the past people refrained from attending church services if they suffered a severe cold or flu. Nowadays we are urged to take a pill and ‘soldier on.’ Most people have no choice due to economic constraints.

(I have written about quarantine before… https://www.susanprestonauthor.com/)

Coronavirus and face masks

The general consensus of opinion is that most of the facemasks available to the public to buy are ineffective. They are ‘surgical’ masks and designed to protect a patient from a nurse/medical worker’s mouth borne germs.

Coronavirus and facemasks

What CAN we do?

  • Be sensible.
  • Be considerate.
  • If you have symptoms of a respiratory infection, stay home.
  • Be careful with your hand hygiene.
  • Avoid crowds

If you have a chronic health problem you are more ‘at risk’ so take the precautions seriously but don’t panic.

Plodding on,

Susan

About last week’s missing ‘post’ – I was in hospital. By the time I came home the five days of violent summer storms had started, and the computer was more ‘off’ than ‘on.’ In the last few days the NBN has been ‘down’ so I have a limited service, and no phone.

The runaway train came down the track…

runaway train, oxygen blog

It was not actually a runaway train, it was a runaway wheelie-walker.

It was carrying my oxygen cylinder, and the nasal prongs were in my nose when the wheelie-walker decided to ignore the brakes were on and take off down the travellator slope.

The runaway train?

travellator

Well, as I said, it was not a train, it was my wheelie-walker that decided to run away.

The brakes were on, and I had used this particular travellator many times before without incident. My back was sore and with one hand I was holding onto the rail. I must have lifted the other briefly from the handle of the walker and it took off down the slope.

wheelie-walker with oxygen cylinder Paula screamed, but could do nothing because she was behind me. A one and a half metre nasal tube connected me to the cylinder on the front of the walker, and I know from experience how much it hurts when the nasal prongs are ‘yanked.’ Fortunately there was no one in front to be hit by the oxygen cylinder, but there was danger. (Other than to my nose.)

Worse than a runaway train

In any accident an unrestrained oxygen cylinder can become a ‘penetrating missile.’ As the technician who set all my equipment warned, “In an accident it will go off like a torpedo.”

torpedo

It was restrained on the wheelie-walker, but the wheelie-walker decided to make like a runaway train, dragging me by the nose. Painful.

Saved

I grabbed the nasal tube and pulled. Fortunately, the tube stayed connected to the nipple on the regulator. This stopped the walker’s flight and I was able to catch up with it, and safely exit the travellator.

A new complication in life at the end of an oxygen tube.

Lesson learned… don’t trust the brakes on the 4 wheel-walkers.

Please understand...

If you have a friend or relative who is oxygen-dependent, or chronically ill in a different life-limiting way, please don’t think they are making excuses when they say they cannot do something.

Several times I have been invited to coffee with the group in a shopping centre café and had to try to explain why I cannot join them. The shopping centre is built on a rather steep slope. Although I am assured the café is on a flat part, reaching it would mean walking, or trying to, walk up a hill at some point.

In my case I also have to ‘factor in’ how long I will be out of home so that I can work out the oxygen required, or number of batteries that will be needed for the portable oxygen concentrator.

A couple of resources

To help you understand the challenges and planning required by someone on oxygen 24/7

https://www.susanprestonauthor.com/living-at-the-end-of-an-oxygen-tube

About that runaway train… it was a song frequently played on Children’s’ Favourites radio programme.Listen here… https://www.youtube.com/watch?v=TFJ3KayeUTc

The words… https://www.flashlyrics.com/lyrics/vernon-dalhart/the-runaway-train-11

Another ‘adventure’ in life at the end of an oxygen tube.

Susan

Fragrance sensitivity is a REAL condition

fragrance sensitivity cannot cope with these

Yes, fragrance sensitivity is real in spite of the anger it can arouse in someone who loves to ‘marinate’ in their favourite perfume or deodorant.

“Marinate’ in perfume was a term used by an Internet friend many years ago and since it describes what it seems like, I remembered it.

What is fragrance sensitivity?

Fragrance sensitivity can be defined as an irritation or an adverse reaction to chemicals in a perfume or other scented products such as air fresheners and cosmetics. Sensitivity to strong odors can make allergic people severely ill. People with asthma or other respiratory illness can be more susceptible to fragrance allergies compared to healthy individuals.


In the US Federal courts have ruled that an allergy to scents can be considered a disability under ADAAA (the most recent amendments to the Americans with Disabilities Act). Under this law, when an employee has a severe reaction to exposure to an odor or scent their employer must act on their behalf to remedy the situation
https://www.fragrancex.com/blog/fragrance-sensitivity/

A study by Anne Steinemann of the University of Melbourne, states, “All fragranced products that I tested . . . emitted chemicals classified as hazardous air pollutants,” Steinemann said in an email. “You may not realize you’re being affected until it’s too late.”
https://www.washingtonpost.com/lifestyle/home/bothered-by-fragrances-this-story-will-be-a-breath-of-fresh-air/2018/03/19/ace83e8a-26cd-11e8-b79d-f3d931db7f68_story.html

A sensory Assault

A horror to someone with fragrance sensitivity

For many people, repeated exposures can bring about a constellation of symptoms,” says Tracie DeFreitas Saab, MS, a human factors consultant with the Job Accommodation Network at West Virginia University.

Those symptoms, she tells WebMD, can range from classic “allergic” reactions, such as sneezing, runny nose, and watery eyes; to headaches, inability to concentrate, and dizziness; to respiratory issues, such as breathing difficulties and wheezing; to skin reactions, such as itching, hives, and other rashes.
https://www.webmd.com/allergies/features/fragrance-allergies-a-sensory-assault#1

Let’s get personal

Why am I writing this now? People who know me, know that I am one of the 500,000 people in Australia with fragrance sensitivity.

Two things happened this week. One, the bank. I went into my bank and stopped in my tracks. It smelled like a perfume shop.

fragrance shop

Even the care worker with me was surprised at the perfume that ‘hit’ us. I had to wait on a bench in the shopping centre mall and leave the care worker to do most of my transaction.

More surprising was the fact that the staff member I spoke to when she brought something out for me to sign said that the bank had installed the fragrance as a signature for their bank.

Really?

What are we coming to that bank branches choose to smell like a perfume shop?

I opened an account at a different bank after asking if they knew of any plans to have their bank branches perfumed. The answer was disbelief.

The second incident was on a different day with a Care worker who came into my home smelling strongly of perfume. My Care Plan specifies that no one is to wear a fragranced product when in my home or taking me out.

When I asked her to leave she chose instead to make a call to her supervisor, all the while her perfume was permeating the air in my lounge room.

When she eventually did leave she was angry and told me she would not give up wearing her signature perfume as she stomped out of my home.

reaction to someone with fragrance sensitivity

Psychological issues

In Australia, last year, people with fragrance sensitivities were 2% of the population. We are vastly outnumbered by people who love fragrances. We are often ostracized, or disbelieved, therefore isolated.

By the way… I used to like wearing perfume.

As for the physical complications, the articles referenced cover much of these, and you will find links to Canadian Lung Foundation documentation in the memoir/help book I wrote called Living at the end of an Oxygen Tube. 

I do not deny your choice to wear perfume, or strong deodorant, or any of the many fragranced products. All I ask is that you respect my need to avoid these odours. Please do not try to prove me wrong and wear something fragranced and come near me. It has been done before. Please know that long after you have left, whatever you were wearing is either still lingering in my home, or affecting me. This is not an ‘affliction’ I would have chosen, it isolates me and limits where I can go… and I am already more limited than I would like to be.

having fragrance sensitivity is isolating

There is much more I could say, but there is enough here, although I would like to hear your opinion… no matter what side of the fence you are on.

Struggling this week,

Susan

Dehydrated, I am told

Dehydration of the earth

Dehydrated?
I would describe the way I am feeling as having been run over by a ‘steam roller.’

Perhaps a steam roller is before your time, I remember them.

Well, this is how one looked, approximately.

being dehydrated feels like being run over by a steam roller

Why am I talking about being dehydrated

Because I have just had a phone call from the oxygen monitoring service and dehydration is what they figure I am suffering from.

(I have to log in online every day and enter a bunch of stats. Things like my oxygen saturation, flow rate of oxygen, and a bunch of questions to be answered.)

Cause: Fluid restriction, several days of 100 f plus days, lots of appointments.

Solution: Told to drink a bit more water, go watch a movie, or at least not do very much.

(When I was in hospital recently the consultant doctor said they wanted me to be dehydrated so that I would lose the fluid.)

Just looked at what’s on TV – not worth  wasting the electricity. Maybe read a book.

Since I do not have the energy to argue I will find somewhere to sit and drink some water. Preferably in front of a fan.

Hopefully, I will re-hydrate instead of dehydrate.

I have to smile,

Susan