Ray N., A Caregiver’s Perspective | Survivor Insight Series
Ray and Mavis N. have been married since the fourth day of June in 1960.
For over 51 years they have shared their lives together. Even when Mavis was diagnosed with mesothelioma, Ray took on the duties of a caregiver.
We would like to thank Ray for speaking with us and giving us his perspective. Their last name is being withheld over privacy concerns.
How was adjusting to the role of a caregiver?
It’s been just over 2 years now and I am not sure I have adjusted to it. But I am getting used to it. I know that at this stage it’s too early to think I am good at it. Because I know it will get harder and harder as this disease takes its toll. I just hope that I am up to it when I am needed most.
What are some of the challenges in caring for a mesothelioma patient?
Challenges I am sure are similar for any carer and mine will arise when my wife is at a stage where she relies heavily on my physical support, I am no longer young and fit and as strong as I was. I think they will come when I need physical strength perhaps for lifting. Others will be emotional. Hiding my sad feelings as we travel this road together.
Have you had any experience of caregiving before?
None in any professional or medical sense. But a lifetime loving relationship between 2 is what caring for each other is all about. It comes naturally.
What was your response when you found out Mavis had cancer?
The moment that diagnosis hit my brain it was numbed. My stomach felt sick, the manner in which it was delivered was painful. We were told that the results of the tests and culture results were back. There are only 2 conditions that are a result of your condition. One is a lung infection the other is Mesothelioma. We have ruled out an infection YOU have mesothelioma.
What on earth is that then? You have Terminal Lung cancer he said. There was a long silence before I said, you just said Terminal, is there no cure. No Nothing was the reply. Oh my god how long have we got. He said 3 months to maybe 2 years. With that we were left alone to think. My world collapsed. This was the end of my world in just a few more weeks everything I had loved over the last 53 years will end. We looked at each other and held hands but the silence said it all. That pain is with me every single day since.
Where did you turn for care giving resources?
Nowhere as far as we knew there was nowhere to get help. This was alien to us. I just tried to do everything I could to minimise any stress both physical and mental that I could for her.
Were there many available?
I have no idea.
What type of support groups did you find helped?
The only support we have found was from friends and family. But we are members of a motorhome group. These have been so wonderful in their support. We have had so much support from people all round the world using groups of people involved in Asbestos related diseases and meso-warriors. Mavis has become very active in these areas. She has written a book and runs a daily blog which currently has received over 55 thousands hits and is read all round the world. We get so much more from facebook. What we would have done without the computer is unbelievable.
What are some common questions you have gotten about mesothelioma or care giving?
Where did she get it? Did she work with it? How long did it take to materialise. What are the symptoms? Is it painful?
We want to thank Ray for taking the time to share his story as a caregiver. Survivor Insight is one of the most requested and visited sections of our site. It helps build community, and allows others to learn from others. Are you strong enough to share your story? Reach out to us at outreach@asbestos.com.