My family and I have been on the dementia journey with my father for a few years now. My father's condition has progressed significantly in the last year, and we are preparing to make the move to memory care within the month.
It is an impossible decision.
There are no good options, no comforting words or clear paths forward. My mother who has lived her whole adult lifetime under the same roof as my father will now be parted from him in her final chapters. But it's virtually the only choice we are left with.
On this journey, there have been a few books recommended to us by medical professionals and those within the dementia care community. Here is my family's honest assessment of these, and the ones that we felt helped us on our journey.
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias by Nancy L. Mace, MA and Peter V. Rabins, MD, MPH
This is one of the most widely recommended books upon your family physician confirming what your family has suspected for some time now...a beloved member of your family has dementia or Alzheimer's Disease. My family personally received this recommendation from several medical professionals throughout the years.
It's dense and isn't particularly joyful to read, as would be expected on this subject matter. Ultimately, we did not find the desire or energy to continue picking up this book to get through it. It just did not connect with us.
I'm of the "google it if I want to quickly understand several perspectives" generation. I understand that Google should not replace actual medical professional opinion and advice; however, it's tremendously helpful when wanting to wrap one's mind around a subject matter quickly and even visually. In contract, The 36-Hour Day reads like it's written by experts with copious amounts of knowledge on the subject matter. And it was tough to get through.
It was also tough to get through for my 80-something mother. She doesn't use Google or the internet as a reference resource like I do. She relies heavily on medical experts to guide her through matters of the physical body. And she also didn't gravitate towards this book. Perhaps it was too overwhelming and daunting with all the other matters she was facing, like dismantling her household of over 50 years and being the primary caretaker.
One particular piece of advice really rubbed the wrong way and caused me to walk away from the book for good. In Chapter 5 Problems Arising in Daily Care, the authors advised taking stock of your household items that were not previously considered dangerous but now could be, ie lawnmowers, sharp knives, soap pods, access to the stove knobs, etc. While I certainly understand the importance of taking these precautions as the need arises per the family or caretaker's best judgement, this section felt like fear-mongering and generated unnecessary overwhelm for me. Of course, this is not the author's fault - this was the lens I was reading through. Their advice is prudent and comprehensive. However, there was no way we could possibly sequester my dad off from all these items listed (and the list was long)! Especially when he was living with my very able and determined mother. This wasn't practical advice. The authors should consider re-working Chapter 5 to be reiterate that dementia comes in stages and move that exhaustive list of to-do's to an appendix.
In short, it wasn't our cup of tea.
Creating Moments of Joy by Jolene Brackey
This was my personal favorite and so comforting when dealing with my dad. I could imagine that this book won't appeal to everyone. It's much more relationship and anecdotal based rather than medically informative. The author is a long-time nurse caretaker of dementia patients and has witnessed over the years what works and doesn't work. In my opinion, this is much more functional and insightful than books that explain the disease and give me a to-do list longer than my arm.
Ms. Brackey provides some really useful nuggets to use immediately with our loved ones locked away due to this disease, and she also provides comfort to the caretaker. This book is full of helpful tips. Some of the ones that helped my family are:
The Caregiver's Guide to Dementia: Practical Advice for Caring for Yourself and Your Loved One by Gail Weatherwill, RN, CAEd
If you need to supplement the soft skill, warm-fuzzies like Creating Moments of Joy offered up with the practical and medically-direct advice, this is the book I would recommend. The way this book is arranged is brilliant!
The author gets right to the point and makes the information so accessible. She summarizes and separates out "What to Say" and "What to Do" for each section. The wealth of information is presented in a format that makes going to back to reference your particular problem in the heat of a moment easy. You can even jump to that section's what to say / do, and pull your game plan for getting over that day's hurdle. Most importantly, it feels like a true guide and not overwhelming.
I also like the amount of anecdotes from her patients and her own life that she weaves in. I can clearly see that she's further along this road of caring for a loved one with dementia than I am, and it resonates with me versus a doctor that is imparting all that has been learned in their office, through books, and through other families' anecdotes. This journey must be shared by those who have lived it.
My Journey into Alzheimer's Disease: A True Story by Robert Davis
As I watched my dad go to places within his mind that I could not reach, I became really curious what his experience was like. Did he have any awareness what was happening? Where did his mind go when he withdrew from us? Was it all just a fuzzy blur for him? He clearly had strong opinions and thoughts still. What was living with dementia like for him?
Those questions led me to this book by Robert Davis. The first part of the book is largely backstory and his religious calling to be a Presbyterian minister and church leader. In my specific instance, that also resonated with me because my father was a Baptist preacher. But that would not be a part of everyone's journey into dementia or Alzheimer's as Mr. Davis had.
The portions of the book that focused on his decline and how he and his wife dealt with it were insightful and sobering. He expounds on paranoia, losing freedom in his daily life, confusion and overwhelm. It brought me to tears many evenings, and can be hard to read at times. However, I felt it was so powerful to see life through their eyes clouded by this disease and creates a compassion that is hard to generate on your own.
Mr. Davis said, "Certainly one of the very real fears felt by anyone with early Alzheimer's disease is the fear of failure. I live with the imminent dread that one mistake in my daily life will mean another freedom will be taken from me. Each freedom taken places me in a smaller playpen with a tighter ritual to maintain myself. For example, any housewife can forget a pan on the stove and burn dinner. She and her family just laugh about it and get a can of something else out for supper. If a person with Alzheimer's gets caught burning something, it is a severe tragedy, another marker of the progress of her incompetency for self-sufficiency." Yes, I can see that - one burnt pan on the stove likely equates to the last time they will be allowed to cook for themselves for the rest of their days. Our measures to protect them tend to be drastic and swift once our loved ones are diagnosed.
Which leads me to one of the most poignant paragraphs in the book written by Mrs. Davis, "Passive euthanasia is the withholding of nourishment, medications, or mechanical devices that could reasonably be expected to sustain life. It is Bob's and my belief that the patient and his family have the right to determine when further prolonging of the "death process" should be stopped."
As a society, we have become medically advanced enough that we can prolong life through all kinds of otherwise deadly ailments, but when we prolong the body of the dementia and Alzheimer's patient we are prolonging their suffering and the family's suffering. Their brain is literally deteriorating. I agree with Mr. and Mrs. Davis' agreed approach to his disease "that death shall be permitted to take its natural course without medical intervention for anything but to maintain what comfort possible. This does not mean we will withhold food and water or regular medications but, rather, when these can no longer be taken willingly they will not be forced by feeding tube or intravenous methods."
I highly recommend this book for very valuable and unique perspective on this heart-breaking journey through dementia.
The best books are the ones that resonate with your family. We all have different needs and desires under these intense circumstances. Some will default to the medical explanations and medical solutions, while others want more caretaking approaches and coping mechanisms.
Whatever works best for you, make sure you reach out to other's to assist you on this journey. If we have discovered one thing that is for sure, it's that this is not something to weather alone. That truly would be a death sentence for the one suffering from the disease and his / her caretaker. Build your community.
What other books do you recommend? Drop me a comment below.