Family Caregivers in Cancer
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I did write a longish post in reply to this and about some of my experiences in my 11 years and counting of being a carer but it turned into a bit of a rant so I deleted it. It was also quite depressing, lengthy and a bit angry as well but maybe one day I will write a full post or something on it.
I agree with much of what was in your link marion but some of the stuff in it was alien to me. Like the bits about carers getting support to help address their needs etc. A carer review sort of thing has never happened to me in all of these years. Must be different in the US I think.
Hugs to all,
Gavin
PS – Lourdes, get back on yer soap box!!! If you get a bigger box then I’ll join you on it as well!!
Lourdes…not a soap box at all. Your are bringing up valid points. The majority of patients are tended to by their loved ones, finally there is some recognition and support offered to those providing invaluable care to their most precious people in their lives.
Hugs
MarionMarion,
Thanks so much for posting this! The link is definitely a wealth of key points, that address so many aspects of being a caregiver, and the sub-roles or within the larger Caregiver role.As I was reading this, I was mentally doing a checklist of all the things I remember doing, and then again what my mother did as her role as well. What just stuck in my mind was the section on the role of Communicator, and how it’s important to communicate with the medical team, but again how cultural differences may impact the way information may actually be communicated.
It made me remember when we had our first palliative team meeting, and my dad, although given pain medications where he wasn’t fully awake, was able to look at me when he noticed I was getting annoyed with the team of individuals, and shook his head to tell me not to argue. I know that part of this response was the way of thinking, that if you don’t respect them (the medical team), he wouldn’t get the treatment that was necessary, or would be treated in a less than positive way. I think just this piece is so cultural as sometimes in certain cultures we see the medical team as the utmost source of information and knowledge. I think it’s so important to remember as caregivers, that we too have so much knowledge about our loved ones, and we have put so much effort into staying up to date on the most recent research, that we too have a lot of knowledge about the disease.
Sorry, off my soap box now, it’s just the point to stuck with me the most while I read.
I do hope others read and discuss further as in a way, I truly do believe, once a caregiver, always a caregiver. Our perspectives change, for the better, in my opinion.
It’s important to recognize that helping the caregiver also helps the patient.
Family caregivers usually begin caregiving without training and are expected to meet many demands without much help and often neglect his or her own quality of life by putting the patient’s needs first.
The family caregiver has many roles besides giving the patient hands-on care.
He/she faces the tough job of taking on new roles and challenges as the patient’s needs change over time.
The caregiver takes on different roles so that the patient gets all the information, support, and treatment he or she needs.
Decision Maker
Advocate
Communicator
In addition to giving the patient hands-on care, caregivers also manage the patient’s medical care, insurance claims, and bill payments, be a companion to the patient,
accompany the patient to doctor appointments, run personal errands, cook, clean, and do other housekeeping chores.
They find doctors and specialists needed and get information that may be hard to find and help
the patient connect with family, friends, neighbors, and community members.It’s important for caregivers to ask for help when they need it. Many people who were once caregivers say they did too much on their own. Some wished that they had asked for help sooner. The best time to find out where to get help is when the patient is diagnosed with cancer. All through caregiving, it’s important to watch for signs of caregiver strain and get help right away. Caregivers who take care of their own needs have the strength to carry on and be a better caregiver.
Today, many health care providers watch for signs of caregiver distress during the course of the patient’s cancer treatment because; when caregiver strain affects the quality of caregiving, the patient’s well-being is also affected.
Please read more and let’s discuss:
https://www.cancer.gov/about-cancer/coping/family-friends/family-caregivers-pdq#section/_4Hugs
Marion
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