Thursday, February 11, 2010

What Dealing With Down Syndrome Taught Me About Dealing With Alzheimer's

Isn't it odd how we can overlook something we know and practice in one area of our lives but neglect to apply that same ingrained principle to other, similar situations that are haunting us? No, you don't need to stop reading just because Alzheimer's Dementia or Down syndrome hasn't directly touched your life [yet]. This post is about how I FINALLY came to apply an invaluable lesson I've applied daily in raising my beautiful children -- 2 of whom, as you may have heard by now, are blessed with an extra 21st chromosome, AKA: Down syndrome -- to my father's condition. And how that lesson translates well to so many areas of my life. This is about advocating for myself and for my loved ones whatever the ailment. It's about self-advocacy, self-education and self-research to ensure that I know what I need to know to get all we need to live long and fulfilling lives.

My father's descent into his currently diagnosed as "moderate" Alzheimer's Dementia has been extraordinarily rapid... apparently sped up by his overuse of alcohol for many years (despite 20 years of abstinence). Thanks to pharmaceutical advertising, we're all too familiar with Aricept as a treatment to slow the progression of the disease. Short of that drug being effective -- it wasn't for Dad and had the really unpleasant side effect of incontinence -- we were not advised to implement any other drugs at all. Over the last 6 months Dad has visited uncountable medical professionals all related to his rapid loss of memory. NONE, not a single doctor specializing in these types of disorders, ever recommended drug therapy to address the problems we were facing together with Dad. Not until his long "walks" and delusions (strongly held, incorrect beliefs including the notion that he was currently working as a police officer) became a barrier to his placement in an Assisted Living Program (ALP), did the notion occur to any of us that drug therapy could help. It wasn't until after my siblings and I asked the medical community treating Dad -- 2 elder-care psychiatrists, an elder-care social worker, a geriatrician and his GP -- to prescribe a drug to sedate him that it clicked. Finally, his GP -- who barely knew Dad because he rarely goes to the doctor and is, oddly, a grand specimen of physical condition at 78 -- listened to our plight and prescribed Haldol. Several lay-folks at the ALP and others skirting the health-care community mentioned unpleasant side effects when prescribing Haldol to the elderly... these very rapidly became evident in Dad. Our backs against the wall, with one final push, the GP prescribed Seroquel. And so the research began.

I don't know why I expected the professionals involved in caring for the elderly would be more forthcoming, open-minded or attend specifically to my Dad's needs regarding prescribing or not prescribing meds to address his condition. But they didn't... at all. Perhaps for fear of legal action as had been suggested. Whatever. To me, the reason is innocuous... They're simply not doing their jobs! And that's what started the wheels going.

What was I thinking? I would never leave the medical, educational, or day-to-day care of my children with Down syndrome solely to the professionals. Sure, I look to them for their advice... But, I know more about my children's needs, behaviors, strengths and weaknesses than anyone else in the world. Why did I think any differently about treatment for my Dad. Turning to the internet for information; asking others who had walked in my shoes, whose parents had suffered the ill-effects of Alzheimer's Dementia; gathering experiential as well as professional information from multiple sources we formulated a plan of action that worked best for Dad specific to his symptoms, health, degree of illness and level of incapacitation (that a word?).

I have done just this every single day of The Boys' lives... with every decision and at every turning point. And, the onset of their genetic condition was even more sudden than the progression of Dad's disease. The learning curve a vertical line straight into the unknown versus the rapid, 6-month decline we've seen with Dad. With the boys, as their mother, I saw it as my job, my responsibility and to their advantage that I research, learn and apply what would and wouldn't work well for us given our particular children, situation, beliefs, conditions etc. Isn't that what blogging is all about? Sharing one's experience such that it might benefit someone else going through the same. Why did I never think to look for blogs written by adult children of parents suffering from Alzheimer's Dementia to learn how they navigated the crazy waters this disease throws you into?

Sadly, it's not even the first time this lesson has been presented to me. A dear friend of mine lost her mother to breast cancer, some years ago, despite surviving for 13 years with the disease. She wrote a book documenting her research, treatments, and health care choices. The moral of her story was that you, the patient -- or in my case, the mother or daughter of the patient -- are in charge of your treatment. Doctors, educators, professionals will follow protocol -- their preferred course of treatment -- which in Dad's case was none at all, each touting their method as the best without necessarily taking the individual details into account. With illnesses -- as with genetic conditions like Down syndrome -- current protocol is often a status quo attitude and may not necessarily be the "best" course of treatment. This is not how things change for the better for the individual or for future generations. This is not how our predecessors got their loved ones out of institutions and into the mainstream or into an Assisted Living Program.

The lesson: Every aspect of the treatment of your loved ones is in your hands. Their medications, education, therapies, living situation -- everything -- is negotiable and should be considered specific to your loved ones' needs. That's not to say that you couldn't just apply the current protocol if that is your choice or the best solution for you. It's just that you don't have to be a helpless victim to a system that may or may not openly offer the best solutions available. The internet is the greatest source of professional and personal information to help you determine what may or may not work for you.

Where do I apply this lesson:

o School placement and/or living arrangements and the advice I receive from the "committee": My boys don't have to be in a contained class or segregated school just because they have Down syndrome. My Dad does not have to be sedated and restrained in a lock-down unit of a nursing home just because he has Alzheimer's Dementia. Customized solutions abound.

o Therapies pertaining to my loved one's physical, emotional, social development: The boys can receive assistance to grow in each of these areas or not. My choice. And, I can (and did) look outside of the usual DS protocol to address some of their specific needs. Same goes for my Dad. Or, as he is at the end of his life, we/he can choose not to address any particular area of his life. The decision is specific to the individuals condition, needs and desires.

o Meds/supplements touted to help my loved one's specific conditions: We get to decide if fish oil or Nutravene supplements help and are worthwhile for my boys. We get to choose the medication we want to use to address Dad's specific symptoms or, as the case may be, not to medicate to slow down the development of the disease.

Feeling helpless, hopeless, out of control or without recourse stresses me out and makes me very unhappy. I know that's a "duh" statement. But this situation with my father played on all of these emotions like my sons' diagnosis of Down syndrome never did. All because I did not step up. I didn't realize I could intervene on his behalf the way I do and have with my children. But, I know now. If you want it, instead of being a victim of the system, you can take responsibility for how and when and whether to treat. You can alter the outcome... and the future for your loved one and for yourself!


  1. Don't be too hard on yourself! It is human to compartmentalize- I am a professional SW and yet it is hard to remember to utilize some of those skills across to my own child. It is alot to take in and while there are commonalities it is also quite distinct (Alzheimers/DS). Geriatric folks are exquisitely sensitive to dosage of all meds and often respond well to micro dosages for therapeutic response.You have alot on your plate to process- hugs. You always do a great job but you are only human and only one of those too! I'm curious how they came to a diagnosis of Alzheimers (vs other organic disorders or medical conditions) since the speed of his deterioration is unusual for that disorder? Brains are fascinating things- hope that you have access to some excellent geriatricians and neurologists!
    Anyhow- you are an inspiration!

  2. I am so glad you get this and I wish everyone did! It is so, so very important for EVERYONE facing a medical issue to have a strong advocate. So sad, but true. I've worked in healthcare for 20 years and I could tell some awful tales.

  3. Hello, I just found your blog rather randomly, but loved this post. I, myself, am dealing with the same frustration in the medical field. I have 2 kids and care for an aging Down Syndrome woman, 54, who is dealing with the beginning stages of dimentia/Alzheimer's. She has been left untreated for quite some time, although she has been showing signs for several years now. I just took over care of her 6 months ago and it has been an uphill battle, to put it mildly, to get the medical field to even acknowledge, much less partner in treatment with her. This was very inspiring to me to keep researching and reading and trying to find some solutions for her needs. Thanks for writing.