I had persistently been visiting Dad's Doctor's office over the past two months hoping to speak with the Doctor about changing the cause of death on Dad's death certificate. (Luckily for me, the office is within walking distance to my house.) The Doctor finally called me about a month ago and I explained briefly over the phone what I was hoping for. His answer was, "Well, I can't do that. How do I know he died from Alzheimer's?" And I responded, "I understand. That is why I have compiled a folder of information that includes some medical records and a recent CT scan..." He gave me the go-ahead to drop it off at his office.
Weeks went by and every time I stopped by, the office manager would shake her head. The Doctor hadn't looked at the information yet. In the meantime, I emailed the administrator, who happens to be his brother, urging him to put pressure on the Dr. to consider my request. I never got a response.
A couple weeks went by, we were busy, and I kept forgetting to check in with the office. Finally I went by on Friday, and there was good news! He approved the change, but forgot to sign the actual paper so that it could be faxed to the mortuary. We were in the home stretch, but I didn't want to celebrate yet. Then, yesterday I got the call that everything was signed and that the fax was being sent. It's sort of anti-climactic, but I know it was the right thing to do for my Dad and for the cause.
I took a picture of the Doctor's corrections....
It will now say that he died of Cardiopulmonary Arrest but right under that (the underlying cause) will be Advanced Alzheimer's Dementia. That should make him a statistic.
The Mortuary called me last Tuesday morning, as planned, with the news that the Doctor refused their request to have the cause of death changed. Her words were, "You were right. He didn't want to change the cause of death." She was surprised and she said he gave no reason.
Unfortunately because she gave me a glimmer of hope, I became quite upset that day. I was fired up and so many thoughts were swirling in my brain. It took some princess music and hugs with Emry to finally calm me down. The next day, I drove to the West Los Angeles VA Hospital to request a copy of my Dad's medical records. Those will take about 10 business days to arrive in the mail. Today is day 6. I sat down and wrote my cover letter for the Doctor because I had to get all the information out of my brain. I was going crazy. My plan is to turn in that letter with a "packet of proof" to the Doctor so that he can be fully informed. Hopefully I will be able to meet with him or speak with him on the phone.
In the meantime, I went through all of my Dad's care plans and doctor's assessments for all the homes he lived in and all the hospitals he stayed at. I currently have 3 different Doctors from 3 different facilities that have stated his diagnoses as Alzheimer's, Dementia, or Dementia Psychosis. These papers do not prove that he died from Alzheimer's, but they do prove that he was on powerful drugs for years because of Alzheimer's. Those drugs combined with the disease are what truly killed my Dad.
I am hoping to find something from the Palliative Care Team at the VA hospital as well. I believe a patient can only be put on Palliative Care if they have a terminal disease. I think that would be very convincing.
While all this was happening, I planted a small garden in the back yard. I am scared to grow vegetables and especially herbs because they always die. I do not have the passion my Dad had for the earth. He was out there every day tending to his garden. So, I started small... 2 Tomato Plants, Basil, Squash, and Pumpkin. Emry says to me often, "Look at my garden, Mama." Maybe she will have Dad's green thumb.
The cause of death on Dad's death certificate is still bothering me. It's actually doing more than that... it brings me to tears of frustration and hurt every time I think about it. I really thought I could let it go, but it crushes me to know that he suffered from this terrible disease for over 9 years and he is technically not a statistic. All the hard work we do to make a difference and to find an eventual end to this disease is all because of him and for the millions of families dealing with this disease every day.
When I was in D.C., a friend of mine and fellow Alzheimer's Advocate shared with me that she is fighting to have her Mother's cause of death changed. I had already come to tears that day thinking about it and felt that it was consuming me because there was nothing I could do. She has changed my thinking and has offered to help me.
She sent so many resources to her Mother's Doctor including a link to death statistical data tables from California Dept of Public
Health proving that Alzheimer's Disease IS a cause of death and an article similar to the one I shared a few blog posts ago that stated Alzheimer's kills more people than previously thought because the disease is under-reported as cause of death.
I feel like I need to prepare for my day in court in order to convince this doctor, who doesn't even know me or my Dad, to change the cause of death.
First on my list was to call the Mortuary because they will need to be involved at some point. The woman was extremely helpful and didn't seem to think I would get much push-back from the Doctor (it sounds like people request changes on the death certificates often and that this specific doctor will usually amend it). She actually says that many people request that Dementia be REMOVED from the cause of death! I can't believe that. The stigma of Alzheimer's still exists. Birth and Death records are pretty powerful, I guess. They become History. They are always the first thing you find when you dig into your ancestry.
Our plan is this: She put in the request today and will hear back by Monday or Tuesday, but will call me Tuesday no matter what. Could it really be this simple? I don't know....
If that doesn't work, I found out that the Doctor's office is 1/4 mile from my house, so I can always stage a sit-in. Just kidding... sort of. Let me just put it this way... I plan to be persistent on the matter.
Shortly after Dad's death (like a day after), I already began wondering what his death certificate would say. I guess you could say I became slightly obsessed and curious. It's very important that Dad becomes a statistic of this horrible disease. The mortuary guessed it would say Dementia of some sort.....
Here is what it says:
Cause of Death: Cardiopulmonary Arrest (immediate cause)
Then other "conditions leading to cause" are listed as: Probable Myocardial Infarction & Coronary Artery Disease
Then listed below under "other significant conditions contributing to death but not resulting in the underlying cause": Advanced Dementia; Hypertension.
I am insulted and incensed. This doctor did not know my Dad but shouldn't his files have said something?! Any and all of Dad's health problems are from Alzheimer's (or dementia). He did have high blood pressure, but that's it. Those heart issues, the fact that he was in a skilled nursing facility, his weight loss... all of it stems from Alzheimer's. I believe that my Dad would have lived a long time if he did not have that disease. He was physically very healthy.
So, when an article came out in the Washington Post two weeks ago stating that a new study ranks Alzheimer's as the 3rd leading cause of death after heart disease and cancer because of misleading death records, I believe it. The article states that "death certificates for many with Alzheimer’s often list a more
immediate reason for death, leading to a severe under-reporting of the
disease as an underlying cause." Click Here to read the entire article. It's very enlightening and shocking.
I am still so mad about his death certificate. I'm trying to let it go, but if I could get it changed, I would. It frustrates me that Dad suffered so long from that disease but it's not going on record as the one and only thing that killed him.
.JPG)
