Talking About End Of Life

Caregivers Journey

We have a loved one who is in the hospital now for over 10 weeks. She has a degenerative liver disease which is affecting all her other organs. Her kidneys are failing and she is now on dialysis. She is battling infections on a weekly basis which is why her stay in the hospital has been extended from week to week. The interesting and amazing thing is that she is so present and active in general. To look at her laying in the bed asleep looking so frail and spent you would think she couldn’t move at all and yet when she wakes and gets herself out of bed and is strolling down the hallway to get a cup of tea from the pantry we just look at each with our mouths hanging open! She orders all of us around. Yet we all know she is so seriously ill. As we see her her getting more physically and mentally exhausted we know she is preparing to leave us. It has been difficult to determine what her life expectancy is because she does appear to be so present to the doctors and nurses. We are stuck somewhere in limbo with the medical profession doing everything they can to keep her alive and then the wait to see what is working and what she has a bad physical and emotional reaction to. We are getting close to the point of deciding that enough is enough and she should be allowed to live her remaining days without being prodded, poked, tested and hooked up to more machines. We have had mini discussions about palliative care in the past year so we have begun to get an idea of her directives and choices. However she is talking more and more about hospice, not wanting to go to dialysis and being so tired. We have discussed options with her and assured her we will make sure she is always comfortable and we will take care of her and are right here if she needs us. We have made sure that the social workers, psychologists and palliative care personnel are briefed at all times and that they are visiting with her on a daily basis. Talking about death and dying when it is at your doorstep is extraordinarily difficult. If there is a way to begin having these dialogues about end of life in advance or at the beginning of a serious illness the discussions can be calmer, less frantic and perhaps less painful. There are wonderful guides, guidelines and support from the palliative care community both online and offline and also from social workers, hospital staff and doctors. These conversations allow directives to be discussed and everyone to get clear about what can and will happen and what will be done. It doesn’t take away the pain and the sadness and the grief or the fear. These feelings won’t go away and there is no guarantee they will even be relieved. But the love and compassion we have for each other and ourselves will make this necessary conversation possible. The memory of these talks and the gentle loving way they were conducted will be a comfort. I’m glad we have had these conversations and will continue having them. The weight on my heart feels a little lighter. I feel relief that I know what my loved one is feeling day to day and what she wants to happen. It insures that she will be comfortable and the she will live and die with dignity. It makes the journey a little bit easier.