Houston Palliative Care and Hospice Physician
Medical Director Memorial Hermann Hospice IPUMedical Director of Palliative Medicine Memorial Hermann Southwest
Editor’s Note: Physician Ana Leech, MD, shares her family’s experience caring for her father, who has a terminal illness. As a hospice and palliative medicine physician, Dr. Leech is able to tell her story from both a personal and medical perspective. This is the third part in a series she wrote as a collection of updates over time. Read parts one and two.
Dad slept better his first night on hospice care. Mom had medications to give him and she felt safer, knowing that help is just a phone call away now.
His health declined enough to sign up for hospice before his 80th birthday. I was hoping he would have his birthday first, but that was not to be. Regardless, he had a great time and we were glad he was doing well enough to be aware of the party.
Although hospice patients are not home bound, my parents don’t really leave the house much these days. Dad gets confused and doesn’t remember where he is, plus he doesn’t want to be a passenger in the car. He wants to drive. And he really doesn’t need to be behind the wheel anymore ― for anyone’s sake.
It gets harder every day. He is disoriented and sometimes forgets who Mom is. He is also obsessed with driving (which he has been doing since he was 12) and it creates a lot of problems for Mom. He tries to sneak the keys, and then gets upset and throws tantrums when she won't let him drive. He is also fixated on cars ― although that is not new. He looks out the window to make sure his car is still there. Last week he insisted he owns three cars and that two are missing from the driveway. He thinks maybe Mom is hiding them from him.
He sleeps so much now. He basically wakes up to eat and goes back to sleep. This is better for Mom because when he is asleep she can rest.
I am not sure how much longer he has, but the person who raised me is gone. Just the shell of his body remains. It hurts so much. Last summer my father was a robust man in his 70s, fully independent and gregarious. Today he is unable to walk on his own and only says a few occasional words which usually don't make sense. He is gone, but his body remains here to suffer and put my mom through the most difficult time of her life.
He has declined markedly in the past couple of days. He has what we call agitated delirium every night. Not sure if it is pain (physical or emotional) or if he is afraid to die. I know he has unfinished business. A book he wanted to publish, another business to start…I just wish we could convey to him that he has done his life's work so that he could let go.
Mom needs more help now; it is so difficult to take care of him like this. I think she should let the hospice people care for him in the inpatient unit, but she wants to take care of him at home. She feels it is her responsibility and that taking him there would be a failure on her part. She has done such a good job for the past couple of months, but he needs a higher level of care. We will work on crisis care, but if his symptoms don't improve, I really hope she will agree to the transfer. They both need to rest.
I can't stop crying. Not because he is dying, but because he is not. He is uncomfortable and miserable and can't die because he is suffering so much. He needs to be sedated. Maybe then he'll relax enough to let his soul fly.
He is actively dying now. It is crazy to know that he will only be here a few more hours. He has been here all my life and now he'll be gone. I know enough to help Mom go through this and also enough to feel a weird pain that no one can feel. Being on both sides of the equation is a rather eerie feeling. I know what the nurse is thinking — but I am also his child feeling what family feels. I so wish for God to be gentle with him and take him soon. May these final hours be just a few.
He showed some signs of dying, but certainly not most. He was comfortable and his symptoms were well controlled by the crisis care nurses that came to his home to be there in his last hours. Then with minimal warning, he just stopped breathing. He let his soul go be with his mother and to wait for us until it is our turn.