Dear Classicalla: I am sorry to hear of your mother's illness and your own travails.
This is somewhat related. I recently lost an elderly pet and I was in a quandary about "when is it time?" The veterinarian gave me a checklist from the "Pawspice" movement (veterinary hospice) about quality of life issues. In the veterinary world, this checklist is meant for making the euthanasia decision, but that's obviously ludicrous in a human situation.
What I found interesting, however, was the checklist itself. I think it is valid for humans as well as animals. I will try to cut-and-paste it here. If the cut-and-paste doesn't go well then
here is the link.
Quality of Life ScaleQuality of Life Scale: The HHHHHMM Scale
Pet caregivers can use this Quality of Life Scale to determine
the success of pawspice care. Score patients using a scale of 1 to 10.
Score
Criterion
1-10
HURT - Adequate pain control, including breathing ability, is first and foremost on the scale. Is the pet's pain successfully managed? Is oxygen necessary?
1-10
HUNGER - Is the pet eating enough? Does hand feeding help? Does the patient require a feeding tube?
1-10
HYDRATION - Is the patient dehydrated? For patients not drinking enough, use subcutaneous fluids once or twice daily to supplement fluid intake.
1-10
HYGIENE - The patient should be brushed and cleaned, particularly after elimination. Avoid pressure scores and keep all wounds clean.
1-10
HAPPINESS - Does the pet express joy and interest? Is the pet responsive to things around him or her (family, toys, etc.)? Is the pet depressed, lonely, anxious, bored or afraid? Can the pet's bed be close to the family activities and not be isolated?
1-10
MOBILITY - Can the patient get up without assistance? Does the pet need human or mechanical help (e.g., a cart)? Does the pet feel like going for a walk? Is the pet having seizures or stumbling? (Some caregivers feel euthanasia is preferable to amputation, yet an animal who has limited mobility but is still alert and responsive can have a good quality of life as long as caregivers are committed to helping the pet.)
1-10
MORE GOOD DAYS THAN BAD - When bad days outnumber good days, quality of life might be compromised. When a healthy human-animal bond is no longer possible, the caregiver must be made aware the end is near. The decision needs to be made if the pet is suffering. If death comes peacefully and painlessly, that is okay.
*TOTAL
*A total over 35 points represents acceptable life quality.
I bring this up because I think, so often, the doctors focus strictly upon the treatment, what chemo they will use, etc. But I urge you not to let the medical staff forget about the quality of life issues. And I'm hoping this list might be helpful to you. Sometimes there are so many things to think about, it's helpful to have a checklist.
For example, you mentioned that your mother had fallen. Can you alert the medical staff to that risk, and get a care plan that will include anti-falling measures?
Will they set up a nutrition plan for your mom? Does she have pain? Do they have a pain control program? If she has to have chemo, can they control the unpleasant side effects?
I don't mean to be insulting, or anything, or make light of your problems. I've known several people undergoing cancer treatment and it's so easy to fall in the cracks, or to have what the medics feel is appropriate treatment but the patient herself has issues that really interfere with quality of life.
And so often, it seems that the patient advocate has to really demand things, to make sure that the patient is well taken care of. It seems that, by default if nothing else, you are the patient care advocate. It's a heavy burden. I hope this list helps. My thoughts and prayers are with you.
