When doctors are cowards...

Some doctors are cowards. Those are strong words that come out of significant frustration.

For several years before she had a diagnosis of Alzheimer’s, our family knew something was wrong with Mom. With her in denial, it took a lot to get her to talk to her physician about our concerns. It took even more convincing for her to keep the appointment with the neurologist. So when we finally did get her to ask and then go, we had an expectation that we would have some support, but that was not our experience. I know that there are some awesome docs out there. I am a nurse and I see and work with some fantastic practitioners, but our experience with our mom and her Alzheimer's and getting help and support was not a good one.

Our mother's doctor, whom she had seen for 25+ years, told her for years that what she was experiencing was simply age-related and to tell her children not to worry, that our concerns were unfounded. Even when we approached with concerns about her driving, He said, “If they can see and they can walk, then they can drive.” We were on our own in keeping Mom and Dad safe. We got to the point where we were concerned that my mom could have an accident and kill someone. It made it much more difficult that her doctor did not support us when it became time to take her keys away. This was a difficult time for our family, and although my mom's doctor did not seem to agree with our concerns, he did fill out forms which my mom had given him for getting a test through the state’s motor vehicle department. Three months after we took the keys away she got a letter asking her to surrender her driver’s license. By that time, family healing had started and this just brought back anger and paranoia that we had her driver’s license revoked when it was her doctor who filled out and sent in the forms that she had given him. Even though she was no longer driving, having to relinquish her driver’s license was another blow that she blamed on us. 

When we finally got Mom to agree to see a neurologist, she cancelled appointments on us to the point that we had to tell the doctor's office to not let her reschedule or cancel again. We sometimes waited months for these appointments. We were only able to say this because my brother had Power of Attorney. My parents also had previously included us on their HIPPA forms. We have each fallen into different roles. Shortly after this, I was named by my parents to be their healthcare proxy. All the siblings agreed that someone needed to accompany Mom to her appointments. Although she didn't like it, it was important that she have someone with her when meeting with her doctors. At this point Mom was often very confused. She could no longer fill out forms and Dad was often unable to give accurate information. My sister was helpful in this area and she and Mom made a deal that she would help with forms and go to the appointments but each would have time alone with the doctor. There were some appointments when both parents and my siblings attended. 

When the neurologist was discussing the results of our mother's evaluation with my sister, she questioned why, if it was, in fact, Alzheimer's disease, didn't the doctor use those words with our mother? The doctor replied, "I don't use the word 'Alzheimer's' with my patients because it is very upsetting.” So there we were with a mother who continued to be in denial and the only ones telling her something was wrong was her family. It was so hard to help Mom as she was so angry with us. When she got results of a scan that showed spots on her brain indicating plaques I called them, "Lynda and Robin spots," because she believed we were the ones causing the stress that led her to forget. 

I just wish that while she still could have understood – however upsetting it would have been – that her doctor or some professional outside the family would have had the guts to tell her what she was dealing with. I think she could have come to terms with it better and it could have avoided her anger towards the ones that love and care for her so much. It would have been better for her doctors to talk frankly and explain her Alzheimer’s diagnosis.

Once our parents moved to a progressive care retirement community, we found a fantastic nurse practitioner specializing in geriatrics that has been tremendously helpful with Mom, Dad and the family. She was able to handle difficult situations with honesty and compassion, giving practical guidance each step of the way. Unfortunately, once Mom was placed in the nursing home her care was transferred to another doctor in the practice. This was difficult as we don't know him and he doesn't know Mom. He has appointments with her without any family knowledge or involvement. The nurse practitioner continued to treat my dad until she moved away. Once you experience this level of excellent care, it makes you want to seek that level out; it's there, it's just been very hard for us to find. Perseverance can be exhausting.

If you find yourself in a similar situation, consider finding another physician, especially one who specializes in geriatrics. Many larger hospitals have geriatric assessment programs that evaluate the patient completely using several practitioners. Here is a sample of one such program:  http://www.amh.org/services/senior-health/geriatric-assessments/. It's important to maintain trust, because as the disease progresses trust is challenged. As seniors age it's helpful to bring a family member to appointments, and add them to HIPPA forms. Discussions about Power of Attorney, Healthcare Proxy and Advance Directives should take place sooner rather than later.