I was in the process of writing my blogs when a question from a conversation I had had with my mother that morning crossed my mind.
That question was – Quality of life, what does it mean to people?
During the conversation with my mother we spoke about my fathers’ current health and his recovery after a recent bout of pneumonia, which then led to diagnosis of emphysema. I should add at this stage that he has also got Alzheimer’s.
Currently he is taking a medication for his Alzheimer’s, as well as steroids to help his lungs. This combination of medicine, my mother has explained to me, has made my father more awake, engaged in TV and films and less confused.
However, she is concerned that since today is the last day of his steroids, he will decline again and she will end up rushing back and forth to hospital.
So I said then maybe they should look at giving the steroids full time if he does go downhill; as quality of life is so important.
My family knows that my dad will deteriorate, and know what to expect. We will ensure that his choice are respected, and that we all love him as we always have.
Yet, whilst we must ensure that he has quality of life, we must never forget that my mother (his main carer) is entitled to her own quality of life.
Of course she is happy he seems much more aware and awake, but it has impacted on her ‘quiet time’ as she calls it. In the past she would assist dad to bed and then have time for herself to surf the net, embarrass us on Facebook and to watch ‘Hollyoaks’ but at the moment she isn’t having that. She confided in me that she was feeling Guilty about feeling Selfish for wanting her ‘quiet time’
But do you know what she isn’t selfish and she has every right to have a Quality of life also.
As a loving, and caring, carer, who looks after her Husband each and every hour, of each and everyday. She should not feel selfish, if her ‘quite time’ is disturbed.
It’s this ‘quite time’ that enables her to recharge her batteries, have a bit of ‘Me Time’, and is vital for her own well being, health and mental health.
It is critically important that she is able to communicate her thoughts and feelings and not be judged, but instead be listened to and supported.
I believe quality of life is key to my dads and mums continued happiness. My mum will ensure my dads quality of life, my family must support and listen to my mother to make sure that she has her.
That support is vital to all carers in this world.
Don’t forget to care for the carer. Don’t let them silently blend into the background.
So in conclusion I feel quality of life to me is about:
• Maintaining identity: ‘See who I am!’
• Sharing decision-making: ‘Involve me!’
• Creating community: ‘Connect with me!’
For both the person who is being cared for and the carer
Let me know what you think? Share your understanding please.