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…
- 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.
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.
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
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.