I have a client, I will call her Amy, who has the most amazing will to live. By rights she should have died the Friday before last. Her oxygen saturation was dismal without the O2 being turned up all the way, her kidneys were shutting down and she had an infection. The doctors didn't think she would live through the night but she's still here, fighting every minute to regain strength so that she can continue living.
This is a person with severe dementia, severe osteoporosis and is pushing 90 years old. How did she get to this point?
About a year ago, Amy fell and basically shattered her hip, actually the top part of her femur. The surgeon put in a metal plate and dozens of screws to hold her bone together so it could heal. Because of her dementia, we were unable to keep Amy from walking too early. If she had to use the bathroom she could not understand why she couldn't just walk the few feet to the toilet even though a caregiver was at her elbow to help her into her wheelchair. People with dementia are not able to understand cause and effect anymore. The facility staff did the best they could but she broke the plate and a few screws early on. The amazing thing was that she wasn't having any pain. The doctor decided to just leave it and see it it would still heal.
About six weeks ago, Amy started having pain... a lot of pain. We don't really know why but it could have been that there had been scar tissue holding everything in place and it either got torn loose or might have been just reabsorbed into her body. Amy was sent to the hospital where she spent a couple nights while the doctors tried to decided what to do. The doctors ultimately decided to send her back to the facility where she lives with "palative care." Palative Care means that they are managing pain. It became obvious pretty quickly that this was not a viable option for Amy. Either she couldn't understand why she couldn't move about without a lot of pain or she had to be sedated so much that she was in a stupor.
I talked with the administrator and the director of nursing at the facility, who agreed with me that this was no way for Amy to live the rest of her life. I called the family (who live a long way away) and discussed the situation with them. We came to the agreement that it would be better to take the risk of surgery rather than "sentence" Amy to the current situation. I called the surgeon who had done the original surgery. We discussed options and I decided on the option that wouldn't "fix" her hip but would take the pain away and still allow her a certain amount of mobility. Amy had been using a wheelchair a lot after the first surgery so she wouldn't miss not being able to walk very much. Again, I ran this option past the family, who also agreed. I also talked with Amy about this. Even though she has severe dementia I felt that she could let me know whether she was in agreement or if the thought of surgery was frightening or repellant to her. She fully agreed to have the surgery. She didn't like being in pain and wanted to do what was needed to stop the pain.
The doctor scheduled the surgery for a Thursday and instructed me to have Amy at the hospital by a certain time on Wednesday. Amy was in a good mood and was able to give consent [unofficial but still important] to the doctor after the doctor explained the procedure again. Amy made it through the surgery without a problem. Unfortunately, on Friday the problems started. Amy's kidneys started shutting down and she got an infection on top of needing all the oxygen they could pump into her. The doctors didn't think Amy would live through Friday night but she was still "kicking" on Saturday. Sunday the doctor notified me that Amy needed a blood transfusion. I talked with the family and told the doctor that yes, we wanted Amy to have the blood. [We figured that if she was fighting the least we could do is give her the tools to fight with.] By Tuesday the doctor said she could return to the facility under "comfort care." [Meaning= death is imminent] Well, today is Sunday and she is still with us. Her kidneys have started working again and she is over the infection. She still needs oxygen but that is minor. She is getting up for some meals. She's having trouble keeping food down [probably a leftover from the anasthesia] but she is obviously fighting to live.
Some people might have disagreed about having surgery arguing that someone with such severe dementia has no quality of life left. If you could see her, you would know what determination and quality of life is all about. Amy is one amazing woman and I am honored to know her and be allowed to serve as her Power of Attorney. Life is Precious... no matter what age.