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…
- 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.
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.
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.