Several weeks ago I began to tell you about transitioning Angie from an independent living apartment to the memory care unit in her retirement community. Since then all the Moss kids have been arriving in waves to help hold down the fort. I don't know if it's the right thing to have one of us try and be there regularly, but it feels too hard not to do that. Everytime one of us walks in her room the response is exactly the same ..."oh Carol (Dottie, Ray, Mary Ann) I was just praying that one of my children would come to visit". Who knew the Moss bunch would one day be the answer to a prayer?
The hardest piece of this whole thing has been for the daughter part of me. Realizing that I can just do my best; understanding what we are facing can not be fixed. The palliative care nurse part of me however, does know there are some important issues that must be addressed. Such as making it very clear to Angie's caregivers what her goals are. It occurs to me that most of you don't have my background but from your comments it is clear that many of you have been through this with your parents. For those of you who have not I want to share a few things. AND I hope some of you will join in this conversation with what you have learned from your experiences.
Angie wants to be comfortable. She does not want to go to the hospital or undergo aggressive tests. Procedures and interventions can always be offered but I know they will not fix her dementia and they may increase, and possibly prolong, her suffering. The last time we went to see her primary care doctor we had a conversation about what mom would want to do in the event that she were dying. She let us know she wanted us to "let her go". She does not want attempts made at resuscitation. This is important for the staff at the care center to know. If she can not swallow safely she still wants to be able to eat for comfort reasons. If she gets pneumonia she wants to have her symptoms treated but does not want to go to the hospital or have IV antibiotics. She does not want a feeding tube. She also has an "outside the hospital DNR" form on her record. This is for her protection and ensures that if 911 is called for some reason they will not attempt to resuscitate her (which they are normally obligated to do if they are called).
These are the basic points that make up a good talk on preferences for care at the end of life. I share my mom's preferences as examples only. What is right for one person is not right for another. The important thing is to talk about it ahead of time so you know what is the right thing for YOUR loved one.
Just one more thing... Angie is not actively dying right now. She may live for another year or even more. But I do know she is on the road to dying. As the palliative care nurse in the family it is my job to be looking ahead for roadblocks and make sure they don't cause needless suffering. As soon as I think she is eligible, I will also get hospice involved for the added support they provide even for someone being cared for in a nursing facility.
OK - time for me to stop talking... and for you to start.