Helping Those Who Care for Parkinson's Patients
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| So, my mom was just admitted tonight for fluctuating and low blood pressure. She was also pretty dehyrdrated. They are doing another swallow test tomorrow and a calorie count. I saw her last Thursday and she wasn't really eating that much. I was told today by the assisted living nurse, that she has refused food and water for the last two days. She has lost weight. I know that her GP is going to bring up the topic of the feeding tube again. I am dreading this. I do have a signed advanced directive from her (from 2000 before she was diagnosed with PD) stating no tubes, no extraordinary measures. The assisted living and the hospital have copies. But the doctors push so hard. It makes tough decisions tougher because I feel like they don't have my back. I talked to my usually uninvolved brother tonight and even he said be strong, we talked about this already and decided no tubes. It was nice to hear that reassurance. My mom had my dad taken off of dialysis when he was in advanced stages of kidney failure because she believed that people go to great lengths to keep loved ones alive so they don't have to suffer the consequences not because they are being a good agent to their sick loved one. I have to keep her able bodied words in my mind. It's odd because I remember thinking that it was an obvious decision at the time and that it was an easy one for her to make. Ha! |
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| Do not carry any guilt over your apparent decision. That's what your mom wanted in 2000 and I certainly do not believe the PD DX would have changed her mind. I hope no one ever tries to negate my own directive--NO FEEDING TUBES. DNR! Bob C |
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I have had to make that decision for my mother and my husband. It sounds so easy but somehow you feel like a murderer. Last year when my husband was in the hospital the docs pushed very hard for a feeding tube - he had far advanced PD and dementia. He was a physicisan and like your mother he had made directives that stated no feeding tube long before he was diagnosed. For two day the docs used every scare tactic they could think of including the fact that he wouldn't be able to take his meds. I even asked my husband and alough I would not have trusted his judgement he remained adamant - no feeding tube. I finally consulted with my brother who is a hospital attorney and he told me to tell the docs that I wanted the case presented to the hospital ethic committee. That stopped the discussion right away but I still had to sign papers stating that I knew the reprucisions of not putting in a feeding tube. I called them the "execution papers". My husband lived an additional 3 months. I have never regretted the decision but I also appreciate the emotional factors involved. You have said before that your mom was ready to go - the kindest thing to do is to let her. |
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| Thanks guys. It's nice to hear reassurances. Part of me wants her around in any condition, but I know in my head that's not right. |