Decisions...
I have two posts rattling around in my head so we will have to see what this one turns into...
I sat at the kitchen table, uncomfortable from the get-go. The patient was sitting to my right, eating a pudding from a plastic cup. She finished it and slid the cup and the spoon across the table to her daughter in law. Her daughter in law slid it back to her and she said..."I want another, I'm hungry." The daughter in law turned to me and explained that her mother in law was on a fluid restriction, and she couldn't have any more because it would make her thirsty. I thought to myself, " what would it hurt, the lady is 85 and if she wants more pudding, then so be it." I looked over at the patient and she smiled from ear to ear...not a tooth in her mouth and the twinkling blue eyes shone bright as she said to me, "I'm not going back to the hospital, am I?"
The tension cleared in the room and we began to talk about the patient's health now, her life and what led us to this very moment. As the patient's son interjected about his mother while his wife talked, I was struck with how hard this decision is for him. He was a quiet man, and while it was beyond difficult to care for his mother with her medical issue and advanced dementia...the thought of losing her was unbearable. He knew he wanted her home with him and not in a nursing home, he knew that he didn't want her to suffer, and he knew that she wasn't getting better. What he didn't know for sure was that at some point, she wasn't going to be with him anymore and that thought, as hard as it is to care for her, was unthinkable.
So we sat and talked...we talked about who she was and who she is now and how while he could decide not to take her to the hospital when her next problem arises, it isn't him making the decision to keep her alive or let her die...it's her body, it's her age, it's how life goes when the body is beginning to shut down. While he said he understood, he continued to rub his forehead and sigh. We explained what we can do to help him in this situation, how he can change his mind, how hospice is about life and comfort and symptom control and having as much dignity and comfort as possible until the end. We left our cards, I advised him to call me with questions and told him to do whatever he needs to do to decide. "Call me" I said, " and if I can help you with anything even if you decide to take her back to the hospital, I would be happy to help" and left.
I appreciate how deeply this decision affected this son. Daily, he and his wife care for this woman who frequently doesn't recognize who they are, where she is and how to even use the restroom. They hardly sleep, they go to work, and care for his momma. I am sure it is beyond difficult to do that day after day. But, we can only hope when or if we become like her...our family will still love us enough to struggle when deciding on continued treatment.
I got a call today that they want to sign her up for hospice care. They are tired and want help...they are still not ready to lose her and I told them that we will help them any way we can...even if they change their mind when she is at the end. My hope is that we can help them get time that is sweet, not so stressful....sleep at night, no fighting about food and drink and we can take away her fear that she will go back to the hospital...
Once again, I am forced to think about how difficult life is...how time marches on and even when you wish things were different, it is what it is. But, I feel very lucky when I work...not because my family is healthy or my life is just as I wish it would be but because it's not. But, it's seems to me, I see, over and over that the struggles and difficulties make us who we are, and make us love each other harder and cherish each other more. The stuff that makes us question who we are and who we want to be on every level...
Here's to thoughts that rattle...
We'll tawk tomorrow,
I love you all,
Terry
I sat at the kitchen table, uncomfortable from the get-go. The patient was sitting to my right, eating a pudding from a plastic cup. She finished it and slid the cup and the spoon across the table to her daughter in law. Her daughter in law slid it back to her and she said..."I want another, I'm hungry." The daughter in law turned to me and explained that her mother in law was on a fluid restriction, and she couldn't have any more because it would make her thirsty. I thought to myself, " what would it hurt, the lady is 85 and if she wants more pudding, then so be it." I looked over at the patient and she smiled from ear to ear...not a tooth in her mouth and the twinkling blue eyes shone bright as she said to me, "I'm not going back to the hospital, am I?"
The tension cleared in the room and we began to talk about the patient's health now, her life and what led us to this very moment. As the patient's son interjected about his mother while his wife talked, I was struck with how hard this decision is for him. He was a quiet man, and while it was beyond difficult to care for his mother with her medical issue and advanced dementia...the thought of losing her was unbearable. He knew he wanted her home with him and not in a nursing home, he knew that he didn't want her to suffer, and he knew that she wasn't getting better. What he didn't know for sure was that at some point, she wasn't going to be with him anymore and that thought, as hard as it is to care for her, was unthinkable.
So we sat and talked...we talked about who she was and who she is now and how while he could decide not to take her to the hospital when her next problem arises, it isn't him making the decision to keep her alive or let her die...it's her body, it's her age, it's how life goes when the body is beginning to shut down. While he said he understood, he continued to rub his forehead and sigh. We explained what we can do to help him in this situation, how he can change his mind, how hospice is about life and comfort and symptom control and having as much dignity and comfort as possible until the end. We left our cards, I advised him to call me with questions and told him to do whatever he needs to do to decide. "Call me" I said, " and if I can help you with anything even if you decide to take her back to the hospital, I would be happy to help" and left.
I appreciate how deeply this decision affected this son. Daily, he and his wife care for this woman who frequently doesn't recognize who they are, where she is and how to even use the restroom. They hardly sleep, they go to work, and care for his momma. I am sure it is beyond difficult to do that day after day. But, we can only hope when or if we become like her...our family will still love us enough to struggle when deciding on continued treatment.
I got a call today that they want to sign her up for hospice care. They are tired and want help...they are still not ready to lose her and I told them that we will help them any way we can...even if they change their mind when she is at the end. My hope is that we can help them get time that is sweet, not so stressful....sleep at night, no fighting about food and drink and we can take away her fear that she will go back to the hospital...
Once again, I am forced to think about how difficult life is...how time marches on and even when you wish things were different, it is what it is. But, I feel very lucky when I work...not because my family is healthy or my life is just as I wish it would be but because it's not. But, it's seems to me, I see, over and over that the struggles and difficulties make us who we are, and make us love each other harder and cherish each other more. The stuff that makes us question who we are and who we want to be on every level...
Here's to thoughts that rattle...
We'll tawk tomorrow,
I love you all,
Terry
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