Blogilogue: Diagnosis – Alzheimer’s (not Lewy Body)
Updated: May 25
Disclaimer: This post contains information and opinions from someone with no background in medicine or science (proceed with extreme caution). Always consult with your own trusted medical and legal practitioners before making any decisions about diagnosis, treatment, estate planning, or outcomes for dementia or any other condition.
Dementia – Never Give Up on Treatment or Cure!
You may not want to know if you or a loved one has dementia but this was never an option for us because we have now seen five family members die from this dread disease. For the first time, I have hope for anyone alive today to get treatment thanks to the book: The End of Alzheimer’s by Dale E. Bredesen, MD. He describes the “ReCODE protocol” which may *reverse* dementia symptoms if treatment begins as soon as possible. Please, if you know anyone with dementia or at risk for it based upon genetic testing, then please get this book to find out how to help them! I wish we had known about this to help Dad and everyone else either suffering (which is far too insufficient a word) or at risk. To learn more about this approach, here is a helpful lecture from Dr. Bredesen which starts by identifying the dementia since treatment options will vary by type or combination.
Photo at: Bee Cave Preserve about one mile from Dad’s final residence – Spring 2017
Dad’s Post-Mortem Diagnosis: Alzheimer’s (not Lewy Body Dementia)
Dad died from dementia complications on June 30, 2017. Turns out that he had Alzheimer’s Disease (not Lewy Bodies Dementia.) To date, a post-mortem autopsy is the only way to confirm any dementia diagnosis since there are different types. This diagnosis was always his nightmare after seeing his mother-in-law and father-in-law waste away from this condition as their results were also confirmed by post-mortem autopsy.
In our ongoing grief haze while Dad was alive, Mom and I had just finished making his prearranged funeral arrangements for cremation when I realized that we both had made a terrible mistake: cremation alone would tell us nothing about why he was dying which was not honoring his wishes to know and to help someone else.
After some brief online research, I realized that Travis County, Texas, has too much burden to be able to help Dad with diagnosis upon his death (especially because Williamson County, where we live, also relies on Travis County Medical Examiner’s office for all their autopsy needs since the entire county has no ME office! Instead, they send all autopsies to either Travis (Central), Tarrant (Dallas), or Harris (Houston) counties. Unbelievable but true at present.
In Texas, there are private companies that handle autopsies for family members including American Forensics in Tarrant County. After talking with them on the phone, I was grateful for their compassion and straightforward advice and immediate payment options. The cost was less than $2,000 and far less than not having the information. Upon Dad’s death at the nursing home, they came to get him with the utmost care and the autopsy was performed right away by the forensic examiner at their facility in Tarrant County. They were unable to test for dementia but they sent away his tissue samples and, within six weeks, they received results from another facility in Loma Linda, CA, and the American Forensics doctor talked with us directly and answered all our questions at no extra charge. The reason they know that Dad had Alzheimer’s is that he had *no* Lewy bodies in his brain but he did have the plaques and tangles characteristic for Alzheimer’s as well as an overall loss in white matter (brain shrinkage.) Of course, none of this tells us what type of Alzheimer’s he had but I remain hopeful that his brain tissue, and with our advance written permission, will be used to study and to help other people so that his death may help someone else as he would have wanted.
Dad’s Dementia Discovery
Dad was built like a five-foot, four inch Hobbit with feet too wide at the top and too narrow heel which made it difficult to find shoes that fit. As he wasted away in bed at the nursing home, his feet looked more feminine and soft as he withered from brain failure with tremor then decline from conversation about wanting to go home to unintelligible whisper to silence to death.
As a young man, he had a dark moppy hair which made him look a bit like Mickey Rooney as the fifth Beatle but he would always resent this comparison since he was a jazz fan and not dazzled by anything rock or Hollywood. By the time I was born, he had a barrel-shaped chest and bald head with full hair around the sides with Charlie Brown sprigs on top. Before he began showing any mental decline, he said several times that he wanted to donate his body to science so that he could help other people.
I never thought that this request would include a dementia diagnosis because I remember him getting infamous Texas seasonal allergies (especially ragweed and cedar), but he rarely had any colds, and, he had survived death twice in his 50s: once from almost being crushed by his pickup truck rolling over his chest while he had it hoisted on two ramps in the driveway (his survival because the truck kept rolling); and, a few years later, when he fell backwards from a ladder about 17 feet tall before spinning around midair in order to brace his fall before passing out when he hit the ground. In both cases, not a bone was broken. To me, he seemed immortal, and just like a Hobbit, he enjoyed meat, adult drinks, and merriment including walks to his beloved Lake Travis from the home he built (in part) by transporting honeycomb rocks by jon boat to the property then adding them to the walls he built both indoors and out.
One of the first moments we knew that he had dementia (maybe in his 60s) was when he showed Mom a section of rock wall that took him almost all day to build and that he felt looked the same as always but, to any other observer, was a misshapen mess with blobby cement and haphazard rocks placed at awkward angles.
I miss him all the time but his depression from dementia was taking its toll. He was drinking heavily almost each night for about three years before he went to the nursing home. Even before he started showing symptoms, he would not talk to Mom or I about any problems. He was pretending all is well to avoid becoming one of the four people whom we had seen succumb to Alzheimer’s: both Mom’s parents and her two aunts. Dad’s side seemed untouched by Alzheimer’s but his Dad may have had Parkinson’s Disease (but my Dad always understood his condition was: “hardening of the arteries” because they didn’t know what else to call it; or, perhaps Dad was not told the same as his cousin who had suspected Parkinson’s. We will never know.)
Hospice in Texas
With everything that we already knew about Alzheimer’s, for some reason, death always seems far away until it’s not. Dad’s decline happens in two days and we know he can never return home. I went to visit he and Mom at home as always. In December 2015, Dad is able to play a bit on piano but not as well as he could before. For the last several years, he has been unable to read music but he still remembers a lot by ear. By March 2016, he can no longer play piano at all. It’s as though he has forgotten how and I will never forget this silence. At all times before, I would show up and hear him from outside the house playing piano. On this day, I enter and Dad is sitting in the chair watching TV and he looks frail – his skull has less hair and he seems distant so I put on some records on an inexpensive turntable that Mom had purchased online a few months before. It doesn’t work as well as the Sears models from yesteryear but we play his favorites: Sarah Vaughan, Ella Fitzgerald, Charlie Parker, Buddy Rich, but there is no recognition. He hears the sounds but they spark no enjoyment or conversation. It’s raining and we decide to go to the lake for a walk. We get Daisy’s leash, she is a Parsons Terrier that they had adopted a few years earlier, and set off to the lake. It’s sprinkling but we have no umbrella. Dad is walking on the same paved road but his gait is uneven. He is walking at a faster but clumsy pace and he speeds up as we continue but I encourage him to walk a bit slower as we are not in a hurry. He slows a bit but is still skipping a beat as the time when I was a kid that he first taught me about syncopation in music. His stride was hitting on the up beat rather than down. We continue down the hill toward the lake. The lake is down but not to drought levels. We make it to the water but he cannot stop so I hold his arm and we turn to go back up the hill from the water’s edge. He is shaky but he continues and does not seem concerned. He says he’s fine. We continue and Daisy’s leash trips him a bit and he collapses down but thankfully does not hit hard. A man and his young son see us fall from their pick-up as they happen to drive by from the Austin Yacht Club and I am so grateful as he jumps the fence to assist us both to our feet. He asks if we’re OK and we said yes but am not sure. They drive away but not without calling for help from our neighbors who are already on their way. We are almost to the gate entrance when two men fireman carry Dad back into the house (one under either arm.) We would not have made it without their assistance. That night, Mom said that Dad got up to use the bathroom from their bed downstairs and, within a few feet from the bed, he gently collapsed and she could not lift him again. She called 911 but he was never able to return home.
I must mention a few things here that everyone needs to know because we have been helped by so many:
1. Hire a board-certified estate planning attorney in your state (before you need help.) They can give you the expert guidance you need. Also, if you gather all the documents that they will need on your loved ones behalf then you may be able to negotiate a flat fee rather than an hourly charge which will save you a lot of money! You may think that you cannot afford this but you MUST afford it if you plan to use the Medicaid system in Texas. Also: If you find that you are paying a lot of money for little help then find another attorney! There are reputable attorneys that will not overcharge you for quality service especially if you are willing to gather all the documents that they need to help you (believe me, there are a lot and it will be painful to do but worth it in the end.)
2. Everyone should have a nurse case manager (and thankfully I can recommend an excellent company here called Nurse Case Managers.) These compassionate experts are there for you at every step and are there to medically evaluate and to help your loved one to receive a proper diagnosis and, by extension, proper care. If we had not already talked to them *before* Dad went to the hospital (when Mom called 911) the the ER doctor would have had no other choice but to send Dad home even though Mom was in no condition to take care of him when he could no longer walk. Instead, the nurse who was handling Dad’s case talked to the doctor and explained his medical condition. At this point, the ER doctor was able to write an order for Dad to send him to a nursing home rather than back to his house! I shudder to think about the alternative had we not already had the nurse case manager on our side!
3. On the way to visit Dad at the nursing home after he left the hospital, it occurred to me that we also needed to contact Hospice Austin because no longer being able to walk was a huge change in his condition. I only had this insight this after talking with a coworker whose Dad had died the year before. Her Dad had some complex medical conditions but thankfully not dementia but she told me that Hospice handles *everything* when your loved one gets to the point that they can no longer care for themselves and it becomes clear that death is imminent. She was right. Thanks to her painful insight, we knew to contact hospice and their doctor determined that Dad met the criteria to join hospice (being within 18 months or less of death.) Turns out that he died 11 months later. Much sooner than we thought and this was all after leaving home, being at a nursing home and then being transferred to his final nursing home when we could no longer afford to stay at the transfer facility which had a two year waitlist for Medicaid patients and whose regular rate was $10K per month compared to his final location which accepted his Medicaid application (as assisted by our estate planning attorney) and at the actual monthly rate of $6,500K. We are heading into crisis territory because most people (including us) could never afford these out-of-pocket costs.
4. Do not ever let anyone tell you that Medicaid is unnecessary. We are living proof that Mom and Dad would have been left on their own to suffer at home with inadequate care without this safety net. As it is, even with Medicaid, the care that Dad received was from people making minimum wage and often working two jobs just to survive. Imagine what this care will look like as Baby Boomers start to age into a system that already does not have enough qualified and compassionate care.
5. I hate all United States nursing homes in their for-profit design. It’s a disturbing system that denigrates care staff with unliving wages and commingles care and profit with compassion available to the highest payor. We have seen otherwise from the hospice system but even they rely on private donations which are never a guarantee.