AboutMargot RN BScN CGN Expertise I nursed my own Mother and Grandmother at home when they were dying so I have personal experience with the emotions involved. I have also spent the last 15+ years as a Registered Nurse caring for The Elderly and Terminally Ill and it has brought me great satisfaction. I am willing to answer any questions I can.
Experience
Past/Present clients Hundreds of Long Term Care Residents as well as hundreds of Cleitns and families in the community (including my Mother and Grandmother).
Question I am going to ask you a question about my sister who has this disease and lives with me. It is very rare. It was diagnosed by her donating blood to her self for a knee replacement surgery. After she was home they sent her to specialist. She refused chemo and radiation and even with that, they gave her 18 months. It has been nearly 2 yrs, she does not take any meds and really ticks off the oncologist who can't believe she is still alive.
This is my question: She has lost massive amounts of weight without dieting. Like 60 lbs. Her bones hurt her all the time. Lately, she is doubled over in pain at the site of her liver. She has tumors on both sides and last visit he told her she was at the beginning of stage four.
They gave her oxycotin for pain. She does not take it but she was in so much pain today I made her take it and I told her (I don't know if I am right) that the higher the pain level the pain meds don't always make you sleep like if you were not in that much pain. She took it and she says it helped.
She will not take a hospice referral but I told her maybe she does not want it but I need it. I do not have anyone to talk to. She will not let me talk to her dr. I have never met him.
I just do not know what the signs are that it is getting worse. Is the liver one of them. I know about the other signs of shutting down etc because we both took care of my mother with lung cancer. She is always cold, very tired but really pushes.
I hope I am not sounding like I am pushing her to die. I am not. But when the time comes for the process to begin, will she sort of take to her bed and it will slowly start or what.
Your patience is a god send and luckily I found this site by accident. Any info would help me cause I don't know what to do for her. Her spirits are very good and niether of us are afraid of her death. I think we are afraid of the process and knowing when has it started.
Thank you. You are a blessing.
Answer Hi Marti and thanks for writing,
I'm sorry to hear about your sister, she sounds like a brave lady.
Obviously I am not familiar with her condition, but it does sound to me like her Cancer has spread and she is already in the end-stage of her disease. Everyone's experience is individual, but most people basically follow the same process but at different speeds. She will grow weaker and spend more and more time in bed sleeping - her appetite will decrease and her pain will most likely become less tolerable.
The most important thing to watch for is comfort - you want to make sure once your sister can't move herself, that she is moved regularly (every two hours) to promote comfort and prevent cramps; you also want to watch for wrinkles or crumbs in the sheets as these little things can cause discomfort. You'll want to do Range of Motion exercises 2-3 times a day to stretch her muscles to promote comfort and prevent contractures. Get a bed-cradle to keep the weight of the sheets & blankets off her feet as this can cause drop-foot which is very painful. You'll also want to watch her skin carefully to prevent bedsores - make it a part of the daily routine to do gentle massages to her whole body with special attention to pressure points (hips, buttocks, shoulders, heels) - massage gently with a little moisturizing lotion in a circular motion and report any redness right away to the nurse or doctor. Also watch her urine for signs of infection (odour or discoloration and treat infections to promote comfort). Talk to the nurse about thickeners for food and fluids to prevent choking as it's very important to make sure your sister gets adequate food and fluids without force-feeding her. You should also talk to her about taking something to promote her comfort - Oxycontin can be sedating, but it is a wonderful pain medication.
