13. Palliative Care at Home
By Susan Ellis of KeyLifeJourneys
I sit here beside my friend of 27 years. Not an easy friendship; one which has caused us much pain, frustration and regret. But somehow "joined at the hip" we have tried to be there for each other in times of crisis.
She was there for me while I had major back surgery during the mid 1980s. She was there for us when my partner was rendered physically dependent by M.S. So now it is my turn to be there.
Tammy was diagnosed with pancreatic cancer a year ago. She underwent the Whipple procedure and then six months of Chemotherapy. She got about 2 months of plain sailing before a bowel obstruction heralded the onward march of the cancer. Tammy is now preparing to die at home with her cat beside her and all the support we can provide. She could have gone straight from the hospital to a palliative care unit but needed closure with her cat. She always had it in her mind that she would ultimately move to a care facility, but now feels comfortable at home and wants to end her days in that setting. Tammy came home from the hospital on August 30th 2010.
Tammy is in control of her decision making and so I have not had to use my Power of Attorney status. But I am the leader of her care team. She has cashed in all her retirement savings and is using them to provide the care she needs. That means 24 hour care as she does not want to be alone. So we have obtained the services of Personal Support Workers from an agency for 17 hours a day. Hiring private duty may cost a great deal less but we were anxious about back up and what happened if the worker got sick. As it is with the agency we have 4 wonderful women who fill the shifts. The Ontario Medical Plan contributes a few hours a week towards the total bill. One shift is from 8pm-8am. The next is from 8am-1pm and the final seven hours are covered by her volunteering friends. Generally the volunteer shifts are from 1-3pm, 3-5pm and 5-8pm. There are three of us who may do more shifts but the others come once a week. All know they have to relieve someone else and wait until the next person arrives.
Tammy has the services of a home visiting nurse who has been so far primarily involved in applying illeostomy and fistula bags which won't leak. Tammy also has a home visiting palliative care doctor.
We keep "visitors" down to a minimum. They are very tiring for Tammy feels the need to be up and sociable. With those who are there for a shift she knows she can be herself. Energy is at a premium and she wants to harness it to walk to the bathroom and empty her own illeostomy bag.
My partner died in a hospital after being taken off life supports. This time there will be no hospital. We are looking for a gentle peaceful dignified transition. We are looking to provide quality of life before a good death. Share the journey.
I sit here beside my friend of 27 years. Not an easy friendship; one which has caused us much pain, frustration and regret. But somehow "joined at the hip" we have tried to be there for each other in times of crisis.
She was there for me while I had major back surgery during the mid 1980s. She was there for us when my partner was rendered physically dependent by M.S. So now it is my turn to be there.
Tammy was diagnosed with pancreatic cancer a year ago. She underwent the Whipple procedure and then six months of Chemotherapy. She got about 2 months of plain sailing before a bowel obstruction heralded the onward march of the cancer. Tammy is now preparing to die at home with her cat beside her and all the support we can provide. She could have gone straight from the hospital to a palliative care unit but needed closure with her cat. She always had it in her mind that she would ultimately move to a care facility, but now feels comfortable at home and wants to end her days in that setting. Tammy came home from the hospital on August 30th 2010.
Tammy is in control of her decision making and so I have not had to use my Power of Attorney status. But I am the leader of her care team. She has cashed in all her retirement savings and is using them to provide the care she needs. That means 24 hour care as she does not want to be alone. So we have obtained the services of Personal Support Workers from an agency for 17 hours a day. Hiring private duty may cost a great deal less but we were anxious about back up and what happened if the worker got sick. As it is with the agency we have 4 wonderful women who fill the shifts. The Ontario Medical Plan contributes a few hours a week towards the total bill. One shift is from 8pm-8am. The next is from 8am-1pm and the final seven hours are covered by her volunteering friends. Generally the volunteer shifts are from 1-3pm, 3-5pm and 5-8pm. There are three of us who may do more shifts but the others come once a week. All know they have to relieve someone else and wait until the next person arrives.
Tammy has the services of a home visiting nurse who has been so far primarily involved in applying illeostomy and fistula bags which won't leak. Tammy also has a home visiting palliative care doctor.
We keep "visitors" down to a minimum. They are very tiring for Tammy feels the need to be up and sociable. With those who are there for a shift she knows she can be herself. Energy is at a premium and she wants to harness it to walk to the bathroom and empty her own illeostomy bag.
My partner died in a hospital after being taken off life supports. This time there will be no hospital. We are looking for a gentle peaceful dignified transition. We are looking to provide quality of life before a good death. Share the journey.
Posted by Key Life Journey's Blog at 9/20/2010 10:21 PM 
Categories: palliative care, palliative care at home
Tags: palliative care at home
Categories: palliative care, palliative care at home
Tags: palliative care at home
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