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.

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