My mom had Alzheimer's. It's a relentlessly cruel disease. I watched it strip her of every joy in life, make her loved ones become strangers and her home environment become a constant danger to her.
I knew the disease was "shrinking" her brain and the damaged areas were lost forever. All the doctors and all the material I read told me this was a fact. Autopsies of deceased Alzheimer's patients confirm these facts. I don't dispute these medical studies.
What I do have is an experience that I present as another fact.
I spent my mom's last Christmas day with her at the nursing home. Mom was always happy to see me, but it was clear she did not know my name or my relationship to her. I was simply someone she liked. She paced the halls of the nursing home day and night and whistled continuously. When she was tired of a visit she whistled louder to drown out my conversation. This visit started out the same. I followed her around and around the halls and chatted away about her grandchildren. As we approached the lobby, Mom suddenly decided to sit down for a bit. That was a rare and welcome event and I was delighted to take a breather on walking and talking. Mom reached out and took my hand. Although she had been unable to say a simple sentence for close to a year, she said, "I have loved, and yet, I am alone.". Tears sprang to my eyes and I tried to comfort her. She shushed me and continued, "And you have loved and you are alone.". Now the tears were flowing. My mom was back and she was comforting me! She continued to converse, normally, for a couple of hours and then became very tired and wanted to sleep.
Over the next few weeks she was able to recognize and talk to several family members. During those weeks she became physically ill and was discovered to be in the late stages of pancreatic cancer. Twenty-two days later, she passed away.
I'm telling you this story because I believe that my mom's brain was not completely damaged beyond hope. Otherwise, how could she have regained the skills of speech, understanding and recognition that Christmas day?
I picked up this book. ~
When Dr. Mary T. Newport's husband was losing a seven year battle with Alzheimer's, she tried to get him into clinical trials. Tests showed him to be ineligible as his condition was verging on severe. Her research led her to believe she could raise his level of functioning with simple dietary changes and he might score high enough to enter one of the trials. This is her account of the shocking improvement he experienced and her plea for more study into this form of therapy.
Snopes will tell you that this work does not fulfill the requirements of a scientific study and that is true. It is the observations of a loving wife, with a scientific background in neonatology. It is her story of research and everyday application of findings, right down to recipes. It is a remarkable account of a man regaining skills and his personality.
I am not an authority on Alzheimer's disease. I'm an at risk daughter of a mother, that lost ten years of her life to a disease that is expected to hit epidemic proportions as the boomers age. I'm someone who knows the toll, physically and emotionally, that the caregivers suffer. I have friends that are watching their loved ones slip away more everyday and I will lose friends to this disease.
If this book had been published before my mom passed away, I would have used Dr. Newport's information to give us a fighting chance. I wanted to let you know the book exists, so you can make the decision on it's validity yourself.
I am forever grateful for that short time my mom was returned to me. But oh, I might have had so much more!
Thank you so much dear Maureen!ReplyDelete
it must have been so hard seeing your mum 'slip away'. but how wonderful that you had that you could experience that clear time with her. This is quite a beacon of hope!The father of a friend of mine had Alzheimer's, it was very difficult for the family to deal with it.
i have written the book down and will suggest it to other people affected.
lots of love
Thanks, Jutta. I had to think long and hard before writing this and decided I would have wanted to know about this possibility.Delete
Awww Maureen...you've bared your soul here...something I know you are not comfortable doing and your story brought tears to my eyes. Kudos to you for trying to help others to not have to endure what you did on such a scale. xo wendyReplyDelete
I'd have to say this wasn't the most fun post to write. I just wanted to raise awareness of an alternative option. Whew! Glad that's done. lolDelete
a gift, your Mom's opportunity to speak with you. here's to a treatment, and soon.ReplyDelete
I consider that special time with Mom as the best Christmas gift ever! Her's is not an isolated case and I figure some angels work overtime on miracles.Delete
I so understand your pain. My mother, too, was ravaged by this terrible disease. Bit by bit she slipped away until there was not a shadow of the person that I knew. It is devastating to everyone in the family.ReplyDelete
I have done a bit of research on it, too. Did you know that you are less at risk if only one parent has it...but at double the risk if a sibling has it...because your genetic makeup is the same as your siblings (provided you have both parents the same).
God bless you-I'm sure this was not an easy post to write. xo Diana
Thanks, Diana, for being your usual, wonderful, supportive self! After my mom was widowed, I thought she'd end her days in my home. As you know, that becomes impossible. If something could have avoided the nursing home, I would have jumped at it! My paternal grandfather had AZ, as well. If a few spoonfuls of coconut oil can spare my kids the pain of watching me disappear, I'm in!Delete
Thank you Maureen. Altzheimers runs on both sides of my family...grandparents, aunts and uncles. I am getting the book because I feel if there is anything at all I can do to reduce my risk, or the risk to my grown children, I will. I appreciate how your sincere concern for others led you to share such a personal story. It touched my very soul. Again, thank you, MarilynReplyDelete
Only 0.1 percent of people carry the familial genetic gene for AZ and it often shows up as early onset (before age 65). My mom was diagnosed as early onset. That's enough for me to take precautions. I expect some backlash from going out on this limb, but knew I would want someone to give me the information and let me decide for myself. We can't make our angels do all the work!Delete
You are very welcome!Delete
Maureen, My biological mother has passed but my stepmother of 35 years has this terrible disease. Thank you for sharing your story and I will pick up this book.ReplyDelete
You are welcome, Sherry. I hope you find something in the book that gives you hope for a better life for your stepmom.Delete
Oh my gosh, what a touching story. Wow...ReplyDelete
I have a friend who has her mother living with her now, and she has Alzheimers. I am going to refer her to your post right now, so she can get this book.
Good luck to your friend. It is so difficult to be the caregiver for someone with AZ. Any improvement in the condition makes the caregiver's life so much easier!ReplyDelete
It must have been a hard post to write Maureen - but it was very touching, and brave. I am sure that anyone with a relative in this situation would be grateful of any help whatsoever.ReplyDelete
You are so right about the gratitude for anything that may be helpful. We accessed every organization and social programme, but they were not very helpful. Thanks for stopping by!Delete
Joe took care of his dad who had this terrible disease and I have taken care of numerous hospitalized patients. I know how it devastates families. That your mom had a long moment of clarity is telling. I hope it gave you much comfort too.ReplyDelete
Those twenty-two days erased all the terrible images in my mind and gave me nice ones to remember Mom by. Staff at the nursing home said they had seen it happen before and had no idea what made it happen. Your Joe must be a wonderful guy!Delete
Thank you for sharing, watching your parents suffer through anything is difficult, I know, I see it first hand now. I am glad to hear you at least had some special moments with you mom, those are the ones you remember and cherish.ReplyDelete
It's so important to imprint the good memories. We don't want to keep the images of a loved one that are less than what we know they were.Delete
I dont know why Maureen, but I ended up crying in this post of yours too... Maybe because my mother is far, far away and I am losing these years, staying away from her when she is absolutely normal. I'm visiting her next month, that's it.ReplyDelete
It's hard to make time to visit when you are far away. We moms can be a pain to our kids sometimes, too, but I didn't know how much it meant to share things with mine until she wasn't there for me. Go for the visit!Delete
Oh Maureen, thanks you for sharing this post with us.ReplyDelete
My Eldest sister has dementia and is still in a retirement home.
She was diagnosed with this disease 2 years ago. I know this is an early sign of AZ. I'm going to pick up this book and my other sister and I are her POE and we will read it together.
Thanks... My heart goes out to you.
I'm so sorry that you are going through this with your sister and I'm sure you are concerned for your own health. There's lots of information in the book to help in being proactive, especially for those of us at risk!Delete