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

Balancing the Books

time for balancing the books

These days balancing the books means making sure I write down all the appointments. Then, that done, I have to arrange transport to those appointments. 

LOL – yes, my life is more complicated nowadays.

It is also more difficult to keep track of things, and I find there is a reason for that.

Background: I have two life-limiting conditions that see me hospitalised from time to time. (Three times in this last year.) The last admission was for the CCF or CHF, the other condition stayed in the background, the COPD, but the coughing, which is always there, is annoying.

I noticed this article… https://www.ncbi.nlm.nih.gov/pubmed/20856825/

“CONCLUSION:

COPD is a major risk factor for cognitive impairment. Among patients with COPD, hypoxemia is a major contributor and regular use of home oxygen is protective. Health care providers should consider screening their COPD patients for cognitive impairment.”

Aha! There is a reason for my forgetfulness. <smile>

Balancing the books of living - mmm

This is more difficult with so much to keep track of. Despite this challenge, if everything is written down at the time – it is possible to balance those books.balance the books by keeping them up to date

As I mentioned in Living at the end of an Oxygen Tube 

“It takes the planning ability of a Field Marshall or a 5-star General to organize my life now.”

Every outing, even if it only to the local doctor (1 km) away, needs a plan, a time estimate and sometimes help to accomplish it.

I will be able to run a small town by the time this is over.

Now that I think of it, I need to go do some balancing with next week’s books. There is a bunch of appointments to check, plus fitting in the services to sort out. Then I need to check if I need oxygen cylinders replaced and ensure the POC batteries are charged.

Keeping the cognitive impairment at bay,

Susan

Self-Absorbed or Narcissistic?

Self-Absorbed or Narcissistic?

Is being self-absorbed the same as being narcissistic? Sometimes, but not always. Looking at the dictionary definitions… Self-absoribed is “absorbed in one’s own thoughts, activities, or interests” https://www.merriam-webster.com/dictionary/self-absorbed

Narcissistic

Having or showing an excessive interest in or admiration of oneself and one’s physical appearance.
https://www.lexico.com/en/definition/narcissistic

They sound pretty similar, although narcissism is also described as a personality disorder.

Being self-absorbed

Could be a pre-cursor to narcissism, or it could be a self-protection check. What do I mean by the latter? I mean that if you have one of the many chronic, or life-limiting diseases it is necessary for you to monitor what is going on inside your body. Are you well enough to…

  • Go out to the shops
  • Go to the cinema
  • Go for lunch with a friend
  • Have a friend, or friends, to your home for a visit.
  • Do some chores?

Being Narcissistic

Self-Absorbed or self love

From the Mayo Clinic…
“Narcissistic personality disorder — one of several types of personality disorders — is a mental condition in which people have an inflated sense of their own importance, a deep need for excessive attention and admiration, troubled relationships, and a lack of empathy for others. But behind this mask of extreme confidence lies a fragile self-esteem that’s vulnerable to the slightest criticism.”
https://www.mayoclinic.org/diseases-conditions/narcissistic-personality-disorder/symptoms-causes/syc-20366662

Self-Absorbed monitoring

I have many friends and acquaintances with life-limiting conditions that I am glad I do not have. However, I can ‘speak to’ having to monitor my breathing.

I can go nowhere without an oxygen delivery device. In my home, it is an oxygen concentrator. Then when I go out it is a transportable version, or an oxygen cylinder. Given the amount of oxygen I now need per minute, the oxygen cylinder allows me to be ‘out’ longer. This is necessary for hospital appointments, but has the drawback of being impossible for me to manage alone.

So, what do I need to monitor?

  • Is my oxygen saturation dropping when I walk from room to room? (If so, going out might be foolish.)
  • Am I well enough to drive? (Which includes loading the Transportable Oxygen Concentrator into the car?)
  • Will there be a lot of ‘fragrance’ where I am going? (This is not always possible to figure out.) Same with ‘Will there be smokers where I am going?’
  • How long will I be there? (Needed in order to estimate how much oxygen, or how many batteries I will need.)
  • If traveling by taxi/transport, will it be full of fragrance? (Most people with lung disease find it difficult to breathe where there is strong fragrance.)
self-absorbed needing a system check

“Chemicals used to add scents to products can cause serious health problems for some people, especially for people with lung diseases such as asthma or COPD . Being near a scented product can make some people sick.”
https://www.lung.ca/lung-health/air-quality/indoor-air-quality/scents

Perhaps the most difficult to deal with is the situation where someone says, “You’re looking well,” then treats you if you ARE well, although you are struggling to cope.

Some medical conditions are ‘invisible’ to others, but not to the person with the condition. That is why they need to be self-absorbed… and that IS different from being narcissistic.

Susan

When I first had to learn to cope with home oxygen it felt as if I was being sucked into a vortex and all the equipment piling in on me.

Eventually, I started documenting the learning curve, and I published it to help others.
https://www.susanprestonauthor.com/living-at-the-end-of-an-oxygen-tube

Bushfires and the Vulnerable

Season for bushfires

I read an article on the bushfires, one which gave me pause to think in a deeper way. Currently making the headlines are bushfires in New South Wales, Australia. Two people have died as well as the homes which have been destroyed… and more. California has fires too, and it was an article about those fires which broadened my understanding.

People lose homes, stock (animals) and equipment, but the article pointed out the long period of time without power. Food can spoil, shops lose their stock, the vulnerable – those who are dependent on electricity to run medical equipment can lose their lives.

Bushfires burn out power lines

Because I need to use oxygen 24/7 power outages are something I have to plan for. My home is registered as having life-support equipment, and I have a backup oxygen cylinder but it had not occurred to me what would happen in a bushfire situation. The backup cylinder would not last more than half a day.

Fortunately, a bushfire is unlikely where I live, although not impossible. But what about those people living where there are fires? If they are unable to make it to a hospital which has enough oxygen they will die.

“But the biggest fears were for the sick and older residents and those who rely on medical devices and equipment like electric wheelchairs.”
https://www.nytimes.com/2019/10/10/us/california-power-outage.html

firemen after a bushfire

Preparing high risk bushfire zones…

“Every year before bushfire season, our crews are hard at work preparing high and extreme bushfire risk zones to reduce the likelihood of a network-related spark that could cause a fire.
https://westernpower.com.au/safety/bushfire-safety/

However, it is not only residents in high risk zones who might be impacted by a power outage as the result of a bushfire. As the article says, some of the regional power lines are hundreds of kilometres long. So, if you, or a friend or relative needs electricity to power medical equipment, or a home oxygen machine an emergency plan needs to be in place before one is needed. Plan ahead.

  • Ambulances might be busy
  • The nearest hospital might not have power

Only the person who needs electricity for a medical reason knows how long he or she will ‘last,’ but might need help with the planning.

Something to think about,

Susan

P.S.

Living at the end of an Oxygen Tube has a new cover.

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

And another P.S. so it will be a PPS

https://kcbsradio.radio.com/media/audio-channel/el-dorado-county-man-living-oxygen-dies-shortly-after-blackout

The Lonely Life of a Carer

seeing a lonely life of a carer

Being a Carer is a lonely life So, unless a person who has a chronic illness lives alone and has no visitors, that person has at least one Carer. It is a task which is misunderstood or not understood.

Life as a Carer…

Life as a Carer is not easy, and is often lonely. Many times it 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's life involves 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.

In the lonely life of a carer...

He or she 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 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.

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.

A carer needs understanding – or at least acceptance.

With all the stresses of caring for another, and trying to cope with the many demands, it is so easy for the Carer to lose confidence.  The carer may feel alone, may feel like giving up, and that his or her own life does not matter.

If you want to understand how to help… how to pray for the carer and the person being cared for… read up on the condition.  Then you might have an idea of the ‘sandals they walk in.’

There is a section in a previous blog about ‘little things’ – they can hurt or heal.

A note might encourage them a little.

a carer needs encouragement

Alternatively 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.’

  • In the end, they cannot make arrangements to have friends come to visit, or go to visit them. This they have learned from the many times they will have to cancel any arrangements. So, either the friends drop them, or the Carer will withdraw from relationships outside the home 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.

See the lonely life of a carer?

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.

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. A life which revolve around medical appointments, tests, medication times, and sometimes hospital admissions.

Sadly, these are the ‘outings’ for the Carer and person being cared for.

A lonely place to be

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 Carer and they will tell you how much it hurts them to see him or her struggling to cope with their care and neglecting their own needs.

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 being isolated near people is a lonely place to be.

Bur they will probably not admit it.

lonely life of a carer

This post is written from experience, and in recognition of the many friends who are currently living the lonely life of a Carer.

It is also for all Carers out there, and for the people needing them.

God bless

Susan

For Better, For Worse

For better for worse, start in hope

For better for worse used to be part of the promises made when a couple married. With the ‘fluid’ attitudes to relationships these days, I am not sure this applies anymore, but I am going to look at some instances where it does, and not only in marriage commitments.

‘For Better, for Worse’

It is easy to keep a relationship puttering along when all is going well, when we are ‘in tune’ with each other. We agree, we plan, we do things. However, this does not always last… we are human.

Have you ever considered the parable of the wise and foolish man? The wise man built his house upon the rock.

“Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock.
Matt 7: 24, 25

I remember as a child singing the chorus, with actions like these boys.

https://www.youtube.com/watch?v=zAjEjxX-DhA

But I want to focus on one section…  ‘The rain came down, the streams rose, and the winds blew and beat against that house;’

Even though the builder was wise, it did not protect him or her from the rain and the wind beating against the house. This is when a relationship is tested.

‘For Worse’ Has Arrived

How will it be handled? All of us have experienced some of the ‘for worse’ in our lives. However, what about the people for whom the ‘for worse’ does not improve?

Many of these are ‘Carers’ – the men, women, and even children, who help a key adult in his or her life.

In the image the climber looks as if he will be successful. A great deal of effort has been put in to reach this point, but effort does not always change things.

The Life of a Carer

A Carer sees what others do not see. A Carer feels the helplessness of not being able to ‘fix’ the problem. It is not that they do not want to ‘fix’ what the other is suffering, it is that they cannot. Oh, there are little things that can be done to alleviate some things, or symptoms, but the underlying cause of the problem remains.

Sometimes the problem is definable and the sufferer and the Carer know the problem.

  • It could be pain so ongoing it affects every part of both their lives. I talk here about the relentless pain that disturbs sleep, and limits daytime activities.
  • For some, it might be caring for someone with a debilitating chronic illness that slowly worsens.
  • Perhaps it is caring for someone with cancer.

And what about those for whom there is no ‘diagnosis?’ Only debilitating symptoms. The Carer sees but there is no ‘label’ for whatever is wrong.

Each one of these, and many others could be a blog on its own.

Over the years I have written on some of the ‘for worse’ aspects of relationships. However, I could keep writing and never cover all of them.

Links to previous blogs

Dementia… https://www.susanprestonauthor.com/mourning-the-living/

Trials https://www.susanprestonauthor.com/trials-have-a-purpose/

And surviving loss https://www.susanprestonauthor.com/grieving-what-no-one-is-talking-about/

And many more writings dealing with the difficulties  of living, loving and caring.

Still, they only scratched the surface. How is it possible to put into words the pain, the exhaustion, the frustration, and even the guilt when you are a Carer, and choose to stay through the ‘for Worse?’

It is not possible, although sometimes the words can ‘touch’ the heart of someone going through the ‘for worse’ season.

Many of my experiences, my training, as a Mental Health Community Sister, a computer trainer and assessor, and my years of experience as a Carer, have gone into the books I have written.

If you know a Carer, reach out. It might not be possible to visit, but how about sending an email, make a phone call, send a card. This is how we love one another. If you have suffered you will know that THIS is when you most appreciate love.

Forget me not flowers

Susan

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