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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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

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.

Dementia… Alzheimer’s Disease, a cruel condition

Sometimes thoughts flutter in like a bird, other times there are flocks. I prefer the one at a time variety… there are so many associated memories to sift through. Mostly, I can make sense of mine – people with Dementia cannot.

Thoughts about this condition were what came gently flying into my mind the other morning Dementia – or Alzheimer’s disease. It is a cruel condition, where families mourn the living.

When I was training as a nurse, I did stints in psychogeriatric wards. Back then, it was called Dementia, usually Senile Dementia.  Alzheimer’s disease referred to early onset dementia.

image saying dementia umbrellaStill whatever it was named, or is named currently, living with it is not easy.

Most times our thoughts are with the person who cares for the ‘sufferer’… and it is no easy task. Simple things need to be explained over and over again. And it is hard to remind someone every few minutes of how to do what you asked them to do.

But…

Have you ever seen the look on the face of someone suffering this debilitating condition when you lose patience with him or her?

It could be fear, or panic, or puzzled hurt.

Let’s imagine it is a mother. You asked her to turn on the dishwasher – ten times.

Ten times, you have told her how to do it.

Then, when you come back from sorting out the washing you find her standing there trying to remember what you told her to do.

She’s in a twilight zone… lost in her mind.

[spacer height=”20px”]

Before you yell at her… think.

Dishwashers were not a part of her life when she was your age.

Remember when you were a child, a very young child.

  • Was this puzzled, confused woman the one who day after day, patiently taught you to tie the laces on your school shoes?
  • Did she sit night after night telling you the same bedtime story – because it was the one you asked for, over and over again?
  • What about toilet-training? You probably do not remember it, but consider, how long that might have taken.

As our lives become faster and busier, it is all too easy to be less patient.

A hurried instruction is not only confusing; it can be frightening to someone who has memory problems.

I read a short story published in a writer’s group publication while in Texas. The writer had memory problems and described a scene. He was walking through a fog and came to a bridge. After crossing the bridge, he looked back. The fog had closed around it and it was no longer there. That is how he described his memory.

signpost saying 'confused', 'lost', 'disoriented', 'bewildered', 'unclear','perplexed'What is it like in the mind of those who have dementia or associated memory problems? I can only guess that, as the sign says… Confused, lost, unsure – all the others mentioned – and perhaps frightened should be added to the list.

One of the first things I had to learn as a student nurse in a psychogeriatric ward was to treat the patients with respect. Yes, even when I had to bath the old lady who had soiled herself. That old lady had lived a life and survived a war, had been headmistress of a school, raised a family and now needed care.

If you know someone who is caring for a relative in ‘the twilight zone’ perhaps sending him or her a card, making a phone call. Simply giving some of your time and listening to the caregiver would be a kindness you could do. Being a caregiver can be a lonely position.

Think on this… the caregiver in such a situation is mourning the living. The sufferer might also be mourning the losses. No one with any form of dementia wakes up one morning and has no memory. That is a different condition. No, dementia in all its guises sneaks up, frightening the sufferer.

This is a quote from a wife… it could have been my neighbor, but it was not. Perhaps it is all the wives, or husbands whose ‘other half’ is missing, not dead.

“He was here, sleeping in the same bed, eating at the same table, — a living, breathing presence, if not a fully present one. His mind was not working so well, but the familiar body was fine, and his heart still tried to be what he had been. Until one day, he could not…”
LILLIAN B. RUBIN

And from me, a rose for you whether you are a carer or a sufferer

Susan