Posts
March of 2007 I first started corresponding with the Doctor at Duke.
Jan of 2008 is when I wrote the doctor concerned that the Aricept was not working properly. I also wrote the doctor about my concerns. Here is an excerpt from that email.
Dear Dr. X,
I am writing to you to let you know that the dose of medicine you currently have my mother on is not working, as her alzheimers is getting much worse. I'm also quite upset that she still has not been formally evaluated for alzheimers. Her sister, her boss, her coworkers, her son, her best friend and my other relatives have all been calling me asking me if she's stopped taking her medicine. I cannot tell you for certain that she IS taking it. I cannot get her to move out here with me, and there isn't much I can do about her situation at the moment.
Since you and I last spoke, she's lost about another 1K to sweepstakes scams, has totalled a car, and is not doing well at all regarding her memory. In the last 6 months, I have seen her decline rapidly. She is really having a hard time with everyday tasks now like cooking and paying bills. I feel like because of her insurance she is 'slipping' through the cracks. She should be properly tested and diagnosed and I need an idea of what sort of care she needs currently, and how I go about geting that.
I noticed at Christmas this year she was very different personality wise. She's really lost interest in everything she once loved to do. Can you please have her come in and see you again. Her insurance will be changing to Medicare since she turned 65. I'd like to have some extensive testing done, and I need to know if you have any alternative recommendations for her. (I've been reading that Omega-3 is supposed to help?)
That pretty much explains how I felt at that time.
Here is the response I got to that email 1 day later.
Names have been X'd out to protect privacy.
Dear Ms. XXXX,
I am sorry that your mother continues to have the changes you describe above. Unfortunately, we scheduled, and rescheduled , follow up visits in October, which she missed. I would certainly like to reevaluate her, and probably start an additional medicine at that time. XXXX XXXX (XXX-XXX-XXXX) can help expedite a return appointment. As you know, [your mom] has had brain imaging (CT) and extensive metabolic studies. We have also tried to get formal neuropsych testing done on two occasions, but these appts were not kept. She does need follow up care with Dr.[primary physician], and with me if she requests. I know this is difficult for you and I am here to help as best I can.
Sincerely,
xxxxx xxxxx, MD
I remember my surprise to find out that she was not keeping appointments. When I asked her about not going to these appointments, she said that her insurance would not pay, and that she had to wait until she turned 65. I called her insurance, and they denied that this was true, but basically at this point, it didn't matter, because she was 65 already anyway, and she now had Medicare.
Well as it turns out, Duke did not have any appointments until April. By the time she actually got around to scheduling her appointment (She had to wait until her medicare kicked in, which was in March of 08,) it was April before she could get in to get her tests done. She had another appointment in May which was the big one. She was there all day and was tested all day. In June, I was in contact with the Dr. about her test results.
All I can remember about this time is feeling lost. Feeling helpless. . Knowing what was to come, but trying to brace myself for the reality of it all. Those were a very hard few months for me, and for my mom.
