The fears, the worries of finances, the guilt, it goes on and on…
With high-risk illnesses there are different levels of unanticipated surprises, unexpected twists and turns that will occur along the way. How to maintain mental emotional toughness plays a big role in the quality of life for the patient and everyone who is involved.
Spiritual Quality of Life
Having faith in a higher spiritual power is the core to acceptance. Life is not a random act. Yet when bad things happen in life the typical reaction is to ask why me. When a sudden change of life occurs acceptance and working with the illness is front and center. It is a time in which to reinvent the quality of life an often finally live life to the fullest.
Thoughts from a patient with high-risk myeloma
Some, (many) do not deal very well with the changes because they are so set in their ways (to not accept change).
It is easier to be flexible and flow. The body has limitations. The mind has no limitations unless we allow it.
“ I work on being the best person I can be to myself and others and receive in kind the kindness and joy from others which brings metal and emotional comfort”.
Quality of life takes on so many colors
Comparing one person’s problems to another person’s is impossible. It’s a matter of how complex their life is in the first place before a crisis.
It’s so very different for single people verse those with families or children watching illness escalate. Kids dealing with family illness (such as a primary parent) get very frustrated and worried about not seeing their parents for weeks on end and having to stay with relatives.
How to deal with life changes when it happens
How to communicate with the family, the kids.
How to find support outside to vent (support groups are so important).
Caregivers Are Overlooked
Care giving can be sad and overwhelming. Patients get cranky, don’t want to eat this or that and frustrations and anger can easily arise. Taking this on should be carefully thought out.
Each of us has our own view of what constitutes quality of life, but most of us would agree that extreme pain is not desirable. The aim of hospice care is for people to live the last months of life with the least amount of suffering possible.
The time when people know they are dying can often be quality time with loved ones because their pain is controlled. Then, emotional fences can be mended and goodbyes said. It’s a time to reaffirm love.
If you have siblings or other family members it will help everyone involved if they all understand the goal of hospice care which is to provide a comfortable and dignified end-of-life experience. Your local hospice will have information and staff members will be happy to talk with your family.
Living the remainder of one’s life well, rather than existing in pain, is what most of us want. For a terminally ill patient that generally means comfort care for the body, mind and spirit.