August 31, 2016 at 5:32 pm #93123gavinModerator
Thank you Rangani for posting this here as well.
GavinAugust 30, 2016 at 7:11 am #12729ranganiParticipant
More details of diagnosis, progression and end of life details are given in a separate post. This post describes the care we gave our mother until end of life. The primary motivation was to keep her as comfortable as we possibly could.
BACKGROUND: Female, age 85 at time of diagnosis, Cholangiocarcinoma diagnosed and biliary stent inserted on 9th May to relieve jaundice. Complication of ascites continued. The doctors advised that no further treatment be given. This also took in to consideration my mother’s written wishes she be not entered to hospital, no nasal feeding tubes and only sedatives and pain killers. She agreed to the initial visit and the stent, only because home care and remedies including sedatives were not easing the discomfort of ascites and jaundice.
SETTING UP HOME HOSPICE ENVIRONMENT
In Sri Lanka, there is no formal hospice service for homes. The main cancer hospitals have a hospice for the patients, however we wanted to provide her care at home. We used a private home visit medical care for doctors to visit and check on her pressure, help with enemas etc. We also obtained services of nursing aides to help the family with care of our mother
PHYSICAL SET UP
We did not get a hospital type bed which though would have been easier for the carers, would have depressed my mother. She was in her own bed to the end. We did get a movable railing on one side of the bed as she did start to move involuntarily in her sleep. The bed was set up with an air mattress to prevent bed pressure sores. This proved to be a good decision as on last day we noticed, even with the air mattress, there were signs of pressure sores starting. A mobile bed side commode was kept so that she didn’t tire out walking to bathroom. An inflatable sink was used to wash her hair while she was in bed, this was used at latter stages.
The physical weakening was quite rapid. At the beginning she continued walking, but we realised she was tiring out halfway distance from her room to dining room, or outside. We started using a wheel chair about 4 weeks after diagnosis. This was at first just a mode of transport from room to where she wanted to go. Once there she would move to normal chair. However towards the end, getting in and out of wheel chair was too tiring so she stayed in chair. The last 10 days or so she didn’t move out of bed at all
From a few months before diagnosis, her appetite was slowing. Due to some dental issues she was eating food mostly blended. That continued at beginning. Gradually she started to eat less. We started adding Brands essence of chicken to each meal. She moved from blended food to more liquid form by way of soups. By end June, intake was largely liquid. Ice cream was a favourite. And chocolate. She was diabetic, but we kept an eye and managed the insulin so that she got to eat whatever she liked.
At mid stages, she found it difficult to open mouth though she did want to eat or drink. We moved to using baby spoons which had soft edges and were more comfortable to push food into mouth. Swallowing was slow. She was very tired at this point, so we did not make her talk to indicate she was ready for next mouth of food. We had to watch her throat movement and listen to sound of swallowing before giving next mouthful.
We supplemented water with fruit juices as her food intake was reducing. Pomegranate juice was the favourite which seemed to always refresh her. We made fresh juice. This was done by putting all the seeds in a clean, unbleached muslin cloth and squeezing the juice out. No added sugar or water. Towards the end, when she indicated she would take something, it was always pomegranate juice.
Initially she was drinking from glass normally. Then we moved to baby feeding cup and straws. Then when the effort of sucking was tiring, we moved to giving liquid also by spoon.
REDUCED FOOD AND DRINK
Latterly she was sleeping a lot and food and water intake greatly reduced and urine output also reduced. The advice we got from doctors and also read on medical sites was that a drip was not required. All my reading also pointed out that nasal feeding also would have increase discomfort. At end stages, the liver is shutting down. It is no longer producing digestive enzymes. The kidneys are also not functioning. Loss of appetite and lack of thirst seems to be natures way of handling the bodys inability to process food and drink. I believe that forcing food would have led to gastric discomfort. This I had observed many years earlier at end stages with my dad who did have a nasal feeding tube to the end. The medical literature I read indicated a drip could also have induced edema as the kidneys would have been incapable of flushing the water out of the body.
We continued to on an hourly basis wet her lips and swab her mouth to ease any drying. Artificial tears were put to her eyes to ease any discomfort of dry eyes.
BATH AND TOILET CARE
She had control during the day until the last three weeks or so. Even before that, we put diapers at night to ensure comfort. Constipation set in fairly early on. She had to be given an oral laxative on daily basis but yet we had to administer suppository or on some occasions administer enema to enable her to have a movement.
Due to fragility of skin, we moved to use of baby care supplies. Baby wet wipes for post toilet use, baby soap, baby lotion, nappy rash cream. Soft baby towels were used post bath rather than regular towels. In the last few weeks bathing was done while in bed. Use of protective sheeting on beds prevented mattress from getting wet.
CARE AND COMFORT
There were 2 or at times 3 employed care givers at home. But we were extremely fortunate that we were in a position to ensure there was a family member at home at all times. About a month after diagnosis, she lost interest in watching TV, reading papers etc. She was in bed a lot. We spent as much time as we could sleeping next to her occasionally holding her so that she knew we were there. In the last few weeks she rarely opened her eyes. It was too tiring. When we would ask if she needed anything sometimes she would say yes to drink, sometimes she didn’t respond so we thought she was asleep. But it turned out she was probably too tired to say no. Because if one of her grandkids walked in and said hi, her eyes would pop open and say hi very clearly! She was probably just tired of hearing her childrens voices continuously asking her if she was ok, if she was hungry, thirst or needed anything. She did like to know if we were there, cos she would reach out with her hand and pat around. So we constantly kept touching her and speaking softly to let her know we were there.
Please contact me directly for any more details. Wishing you all strength, courage and grace to face what you are going through.
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