From a woman who endured end-stage:
INFORMATION FOR PCa FAMILIES
[A woman who lost her father to prostate cancer advises how families can deal with the issues created by end-stage cancer.]
I'm a previous Circler who lost my dad to prostate cancer in April this year , so I have a 'specific'/unique/different perspective than most may who are on the list.
From my perspective, and from a CANADIAN perspective....
Folks must become aware that they must educate themselves about the healthcare resources and limitations in their area.
Folks must know how to advocate for their loved one when the systems lets them down - don't let it happen.
Folks must know they they are entitled to demand a doctor, when their loved one is in final stage pain, and not be intimidated by a system which is money conscious, not patient-centric
Folks need to educate themselves about palliative care - how wonderful, effective, worthwhile and loving it is in contrast to medical systems that are red-tape bound and that does not have / take the time to know the PCA patient's medical state and/or needs.
Folks need to learn who it is in their community to 'light a fire' under the other ones who have the political will and budget to put funding into PCa prevention, monitoring and care
Folks need to realize if they teach themselves about the final stages, it doesn't mean they have given up on their loved one's ability to 'beat' their PCa. It just means they have info that they can draw on later, should the situation arise. When they are in crisis or exhaustion, and have no time or energy to pursue it then . . . we as a society have to be told it's okay to cry - men, women, families, relatives, when life threatening issues arise. Some families don't express emotion. Some do.. All have issues that need to be vented one way or the other. Don't hold back. Let it out.
Folks who are caregivers need respite avenues pre-planned, before caregiving puts their health at risk. Public and private policy needs to be encouraged to support those who provide end-stage home care vs. burdening the healthcare system with $700 and up per day costs. Those savings should partially benefit the exhausted home care family members who have lost income, residence, career opportunity, savings, pension growth compounded, so they could care for their loved one.
Folks need to give themselves permission to 'stir up some dirt' if our societal systems do not support a gentle, compassionate, respectful and graceful transition into the beyond for our loved ones. It's the last thing we can do for them. Caregivers need to be cajoled, approached, and advertised to, to raise their awareness of resources available and supports available to them, e.g., online disc group, in person support group, books, videos, vs. them having to each start at 'square one' when a family member is diagnosed. Our doctors need to send families on their merry way with some INFORMATION about resources vs. "here is your diagnosis, see me in 6 weeks."
Workplaces must be accommodating for leaves of absence, and we the public must advocate for these. Survivors need ongoing grief counseling and support, sent to them by the doctor, hospital, government, home-care agency, church, or whomever was in the support team prior to the loved one's passing.
We need to learn what our physical limitations are, and learn how NOT to exceed them, causing burnout. We need to listen to our bodies
Women especially need to learn they are not Joan of Arc. It is not their sole responsibility to take on the care burden. In our family the two daughters did all the end-stage at-home caregiving. The three sons did none. This is not equitable. We need to change our priorities of who should bear the burden and women must ask and demand equal sharing of the emotional and mental and physical and spiritual burden that intense caregiving takes. I don't think there is one woman who would turn down the role of being caregiver, not for a second. But I also know that there are many male family members who have absolutely NO CLUE as to the burden and work that they have taken on, or else they would pitch in.
We need to value the provision of family-centred home care as much as office work, as our society ages.
We need to identify a 'top 10' list of things a caregiver to do when things get too heavy of a burden, to fend off depression, e.g., walk to park, crafts, favourite type of exercise, person to call, inspirational reading, so that if time comes when they are having a challenging day, they have this list to draw on when their mind is not in the thinking mode. We need to find out if those in small communities have access to hospice. Many do not. Let's keep families together at a most crucial and precious time
Another day, I could go on and on. This stuff rolled off my head in 10 minutes or so.