The Dreaded AD

mom then and now

Alzheimer’s Disease is not a happy subject, nor one that is specifically Cape Ann focused, but is one that has, is now, or may one day effect many GMG contributors and readers, personally or through a loved one.

My mother, who is a very young, healthy and still beautiful 82 year old, has been suffering from increasing memory loss for a couple of years, and has been on Donepezil for almost a year, with little noticeable affect.  Recently she took a sudden, severe and alarming cognitive nosedive which has resulted in my spending more time at her house attempting to get her back on a even keel and doing damage control on the chaos of paperwork, bills not paid, and other alarming developments that occurred very rapidly.  While going through and organizing papers and her surroundings, I have been coming across a lot of the old photos and history that you have been seeing me share on the blog recently.

Over the past year, I have been researching Alzheimer’s, memory and brain health in general.  I wanted to share some of what I have learned in case it might be beneficial to someone else in a similar situation, now or in the future.  Also, if anyone has other helpful information to share from their own experiences, it would be most welcome.   

For those who don’t know, Dementia is a loss of brain function that occurs with certain diseases.  It is not a normal symptom of aging, as I had long thought.  Alzheimer’s disease (AD) is one form of dementia that gradually gets worse over time and affects memory, thinking, and behavior.  While AD is the 6th leading cause of death in the US, living with the disease is the more devastating aspect of it, both for the sufferers and their families and loved ones.

Dementia symptoms usually first appear as forgetfulness, and include difficulty with many areas of mental function, including: Emotional behavior or personality, Language, Memory, Perception, Thinking and judgment (cognitive skills).

Mild cognitive impairment (“MCI”) is the stage between normal forgetfulness due to aging, and the development of AD. People with MCI have mild problems with thinking and memory that do not interfere with everyday activities. They are often aware of their forgetfulness, and not everyone with MCI develops AD.  Symptoms of MCI include:  Difficulty performing more than one task at a time, difficulty solving problems, forgetting recent events or conversations, and taking longer to perform more difficult activities.

The early symptoms of AD can include:

  • Difficulty performing tasks that take some thought, but used to come easily, such as balancing a checkbook, playing complex games (such as bridge), and learning new information or routines
  • Getting lost on familiar routes
  • Language problems, such as trouble finding the name of familiar objects
  • Losing interest in things previously enjoyed
  • Misplacing items
  • Personality changes and loss of social skills

Although there is no proven way to prevent AD, there are some practices that may be worth incorporating into your daily routine, particularly if you have a family history of dementia. Talk to your doctor about any of these approaches, especially those that involve taking a medication or supplements.

  • Consume a low-fat diet.
  • Eat cold-water fish (like tuna, salmon, and mackerel) rich in omega-3 fatty acids, at least 2 to 3 times per week.
  • Reduce your intake of linoleic acid found in margarine, butter, and dairy products.
  • Increase antioxidants like carotenoids, vitamin E, and vitamin C by eating plenty of dark colored fruits and vegetables.
  • Maintain a normal blood pressure.
  • Stay mentally and socially active throughout your life.
  • Consider taking nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen (Advil, Motrin), sulindac (Clinoril), orindomethacin (Indocin). Statin drugs, a class of medications normally used for high cholesterol, may help lower your risk of AD. Talk to your doctor about the pros and cons of using these medications for prevention.

Nutritional Therapy for Alzheimer’s Disease

Nutritional therapists use diet to deter Alzheimer’s disease in susceptible people. Many practitioners now believe that certain nutritional deficiencies or excesses may actually trigger the disease. For example, free radicals, compounds in the body that can damage tissues and quicken the aging process, have been linked to the progression of the disease. Antioxidants have the ability to neutralize free radicals and are, therefore, typically recommended as preventive measures. Nutrients that are antioxidants or help in the antioxidant process include Beta-carotene, Vitamins C and E and Selenium.

Good food sources of beta-carotene include apricots, carrots, spinach and sweet potatoes. Vitamin C is found in broccoli, grapefruits, oranges and strawberries, and vitamin E is available from nuts and vegetable oils (coconut oil is especially good, as well as virgin olive oil as they are low in pro inflammatory Omega 6 – avoid sunflower, soy, cottonseed and corn oils which are the highest Omega 6 oils). Selenium is found in brewer’s yeast, cabbage, fish, liver and whole-grain cereals (although watch out for gluten). Supplements may also be prescribed to supply antioxidants, especially in the case of vitamin E, which has high-fat food sources.

Some supplements may actually be useful for slowing the progression of the disease. Phosphatidyl choline (also contained in eggs, soybeans, mustard, sunflower, and other foods) enhances the production of the neurotransmitter acetylcholine which is important for memory and other bodily functions. Acetylcholine-transmitting neurons and their target nerve cells are the most frequently affected part of the brain in Alzheimer’s disease. N-Acetyl-l-carnitine also appears to protect neurons in a similar manner. Phosphatidyl serine can enhance neural functioning significantly by normalizing cell membrane fluidity.

People with Alzheimer’s disease are frequently deficient in vitamin B12, vitamin B6, and folate. Adding these can also be preventive measures. Vitamin B12 deficiency is often associated with depression, confusion, neurologic problems and memory loss. Folate deficiency can also cause these symptoms, and deficiency of vitamin B6 is associated with a decline in the number of receptors in the brain for the neurotransmitter dopamine. All of these symptoms of deficiency seem to parallel the major symptoms of Alzheimer’s-related brain dysfunction.  Other helpful supplements include Zinc, Niacin and Coenzyme Q10.

I recently caught Dr. David Perlmutter’s show “Brainchange” on PBS and was interested in his findings and the treatments he is using with his Alzheimer’s, ADHD and Parkinson’s patients which involves removing gluten and sugar from their diets.  To learn more about the dangers of gluten to your brain, visit http://www.drperlmutter.com/eat/list-of-gluten-free-foods/ or if you have a chance, watch him and the show “Brainchange” on PBS.  This is not just for people with AD, but for all of us who want to do whatever we can now to prevent it and other neurological disorders in ourselves down the road.  I was alarmed to find out that AD can begin developing in our brains 20 or more years before symptoms appear – a good reason for people of all ages to follow a brain healthy diet and lifestyle.

In addition to a brain healthy diet, regular physical exercise is critical, as is an active social life.  As with other parts of our bodies, the adage “use it or lose it” applies equally to our brains, so learning new things and challenging your mind are important.  Contrary to popular belief, recent studies have determined that crossword puzzles do not improve cognitive function.  Of course, keep doing them if you enjoy them, as they may help with a brain function called fluency, or word finding, if you do ones that are challenging.

I am in the process of organizing my mother’s home (creating files and folders for the mounds of papers and photos, getting clothes hung and put away – color coordinated to make it easier for her to find things that go together, and throwing out things that are broken and of no value to anyone); have started preparing and bringing her brain healthy foods (and eating them myself) and getting rid of nutritionally bad things in her refrigerator and pantry.  I have gotten her to start keeping a memory journal to write down the flood of incredibly detailed old memories that seem to be crowding out what she did this morning or yesterday; and taken her kicking and screaming (slight exaggeration) to the Senior Center where they have great exercise and other classes, nice people and functions to get her more socially active (yes, mom, with all those “Old People”).  In a couple of weeks we go to her Neurologist to update him on what has happened and see about getting a brain scan and other tests done, in case there is something else going on that is causing her rapid decline.

Other than that, I don’t know what to do, except pray, listen and watch, keep researching and enjoy the time I am able to spend with her, hearing old stories and learning her history and the history of our family that I never paid much attention to when I was younger.  I realize I am blessed to be able to have this time with her.  Not everyone gets that opportunity.

E.J. Lefavour

27 comments

  • E.J. What a beautiful post. It is so important for people with AD to write things down. My godmother’s mother used a tape recorder to tell stories. Your mom certainly is a beautiful woman.

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  • I am so very sorry to learn of your Mom’s terrible disease and that she has taken a turn for the worse. We are here for you EJ. It must be very difficult for you and you are doing all many good things for her. She loves you for it even though she may no longer be able to express her appreciation. Thank you for sharing what you have learned and especially for the preventative measures that can be taken through diet and exercise.

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    • Believe me, everything I am researching and having her do, I am doing myself. I’m hellbent and determined to turn the tide of this with her if at all possible, and to do whatever I can to make sure I don’t go in the same direction. At this point, she’s not always happy about what I am trying to get her to do, or not do, but she knows I am trying to help her. We do a lot of hugging, crying and reminiscing together when I am there, and I know she appreciates that.

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  • I’m so sorry this has come to your family as well. AD took the last several years of my mom’s life. Please let me help any way I can.

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  • So sorry this has come to your family too. AD took the last several years of my mom’s life too. Please let me know if I can help, even if it’s just to listen.

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  • EJ, thanks for this sharing your research material. Your strength and direction is admirable. Many of us are dealing with aging parents and it is not easy. My father lives in a Memory Care Center and we’re so grateful that he doesn’t know what he doesn’t know. As a result he’s very content.

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  • Our generation has much to learn about AD. Thanks for helping.

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  • Another great posting from you filled with information for our health, more than our doctors have advised.printed to keep. Thanks

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  • EJ, thank you so much for posting this info on the blog. My heart goes out to you and your mom.
    she is lucky to have such a wonderful caring daughter. All I can say is you are doing all the right things. I find with my husband Libby pictures are wonderful. Music is another thing he loves. DVD of music concerts are incredible. If your mom has a favorite music artist find a CD or a DVD of a concert they perform in. Libby loves Andrea Bocelli, James Taylor, Jimmy Buffett, Michael Bublee’
    Also loves comedy there are DVD of I Love Lucy, Dean Martin. Movies with music are enjoyed by ALZ patients also. I heard coconut oil is great for the brain but can increase cholesterol. There is a book I think the second edition for Alz caregivers it is very helpful. Tells the stages and what to expect and helpful hints in certain situations. The afternoons seem to be worse and it has a name “sun downing”. Keeping a continued schedule helps too. If I can help and you’d like to talk I’m here for you. Much love and prayers Pat

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    • Thanks so much Pat. I know you know all too well about this disease. My mother was recounting this weekend about when her father died, and how the only person he wanted with him was my mother singing Danny Boy, his favorite song. I was very happy to find her in a better state this weekend. Do things go in blips like that, where there is a sudden decline, but then a return again to where they were before it happened? I want to believe that the food, organizing, help getting things back in order, visits and her coming out of the state of depression that she was in are all helping.

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  • EJ, Thank you for posting this info on the GMG blog. My heart and prayers go out to you and your mom. There is a book called 36 hour day about ALZ which is very helpful for caregivers. I think there is a second edition of it too. As you know my husband Libby has ALZ, It is very hard to diagnose in the beginning mimmicks depression which happened with Libby. The first thing Dr,s do is test for the B6 and B12 deficiency witch will cause memory loss and with medication it is cured. They will do a brain scan but really doesn’t show if you have ALZ but does rule other things out. Aricept and Namenda are two medications for ALZ but you are cautioned that when you start these meds do not stop because you will see a significant decline. All I can say is Music, Music, Music is very helpful ALZ patients love it. In Libby’s case he loves Andre Bocelli and James Taylor,,Neil Diamond and I show him DVD’s of there concerts a lot and he tunes in and really enjoys them. Your mother may have a favorite music artist I suggest you get some DVDs’ for her or even CDs’ for her to listen too. The hallmark channel is another thing she may enjoy. They are easy to understand and follow. Also movies Sound of Music she will love. the old movies with Fred Astaire where there is dancing and music is wonderful. Comedy shows like I love Lucy, Dean Martin etc are other good choices. Pictures and reminiscing are good. Poetry, reading her stories, crafting even painting Flower arranging.. Tossing a ball or playing cards, bingo to mention a few.
    Just know that I am here for you to talk or if I can help in anyway let me know.
    Much love, Pat.

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  • EJ – One of the hardest subjects and very painful to deal with. I have been around friends that parents had it and had a military friend who had it this way. His wife had trouble dealing with him and I helped her as much as I could keep the faith…”Always stand close when they need you the most.” :-(
    Hope the below helps in some small – way?

    A friend sent this to me so I wanted to share it with you! So sorry to hear this thank you for this most valuable information!!
    MEMORY LOSS SONG (ALZHEIMER’S, DEMENTIA) “Love Them
    http://www.youtube.com/watch?v=O2Fo_oU7EA4

    http://www.libbyallensongs.com/

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    • Thank you so much Dave. That made me cry big time, but it was so beautiful, and so important to remember that even when the time comes that it seems she no longer remembers me or my siblings, that memory can come back, right up to the end.

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      • You are welcome! Sometimes a needed cry helps – I know how hard this is believe me! You can send me an email any time…Even as far away as I am there may be something I can share…Everything that can be done you are doing – but also give yourself some down-time to let it go! (Vicarious Trauma happens in families, public safey Police, Fire Department, hospital settings, health-care) The term vicarious trauma (Perlman & Saakvitne, 1995), sometimes also called (compassion fatigue), is the latest term that describes the phenomenon generally associated with the “cost of caring” for others (Figley, 1982).
        Prayers and thoughts are with you!
        God Bless Dave & Kim

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  • So sorry, EJ. Alzheimer’s took my mother too. I found it a very difficult disease to deal with, but it was not without its silver linings. My older sister is a caregiver coach now, as a result of her work with my mom and her further study to help others. I will drop off a copy of her book the next time I’m on Rocky Neck.

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    • Thanks Greg, I would really appreciate that. Just looking at my own family dynamics, I have a feeling that women in a family, and especially, as in my case the oldest girl or sister, probably do end up going more naturally to the role of caregiver than the boys. Except for the youngest who is very close to my mother, my brothers seem to be in denial and just don’t want to accept what is happening.

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  • Your beautiful mother is very lucky to have you as her daughter. Best wishes, EJ

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  • EJ, I’d be glad to share with you something that’s helping many people with AD, recommended by many AD experts, in line with what you already know. Please contact me if you would like to speak by phone about it: 978-283-5039.

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  • One of the passages in our lives is the moment we realize our parents, the ones we depended upon, are now dependent on us. Your journey today and the one you have taken us on last week speaks to volumes to the life your family has given and has prepared you for this moment. EJ ~ you are prepared to do this ~ your instincts are in place ~ enjoying the good moments and working thru the difficult. Thank you for the valuable information you have provided ~ a timely reminder for many of your FOBs. My best wishes for a good today to you and your mother ~

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    • Thanks Mary. This weekend my mother was saying that after all the years of taking care of us (there are 6 of us, me being the oldest), she never thought we would be taking care of her, and that it was really difficult for her. When we are young, we thrive on being taken care of as we grow and head for the open skies of life. When we are older, not so much, because of the loss of independence and the fact that the care is heralding our departure, our end of life. More so for her because she did it all by herself after my father left in 1975, after being a stay at home mom. She worked different jobs and then started her own landscaping business, which she ran for years, designing and keeping up her own and other people’s gardens, building beautiful stone walls at homes and business places all around her area, doing jewelry and floral design and being totally independent, very organized and meticulous, and had a great memory. It is really hard for her to realize that she is no longer in business, will not be again, has let so many things slide, and just can’t remember. It is really so very sad to see.

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  • What a sadness you have shared with us. I met your mother one day last summer with you in front of your house. She was lovely. I know this is a horrid disease and my thoughts and love are with you, EJ.

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  • Thank you for sharing that, EJ. It is so common to hear, and the more we understand, the better we can cope. What a nice smile. Best wishes :- )

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  • We are so sorry to hear this news. All our love to you and your family as you deal with this.

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  • My mom died last year at 91 She had severe dementia for years, and even before the disease was obvious I could see her having memory problems starting about age 80. I like your ideas, which pretty much cover all the angles. For any given person, some interventions may prove helpful, and some will not. There aren’t (so far) any home runs against Alzheimer’s, but I do think we can hit a number of singles. Look after her medical care (as Pat said….there are a lot of diseases with symptoms that mimic Alzheimer’s), make sure medications are taken as prescribed, and look for things that can worsen cognitive decline, such as urinary tract infections. I think keeping socially and intellectually active is perhaps the most powerful deterrent to cognitive losses, and it sounds as if you are doing what you can. A couple of other points: Expect the unexpected. In my career I frequently cared for people afflicted with Alzheimer’s, so I couldn’t claim total ignorance of this disorder. Nonetheless, with Mom I was continually blindsided by unexpected symptoms, personality changes, and behavioral aberrations. Which leads me to point number 2: Take care of yourself. Make it a priority. You can’t take care of someone else if you are wiped out by caregiving, and the unpredictability of this disease means one has great difficulty maintaining healthy personal distance. You are always waiting for the next crisis and when you aren’t physically present it is still on your mind. I know this is much easier said than done. I sure had trouble maintaining my mental health! If it isn’t obvious by now, what I’m trying to say is this is as much about you and those who love and care for your mother, as it is about her.

    No doubt you are her best medicine! Ann and I will be thinking of you and will try to be supportive as we can be. Best wishes!

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    • Well said!

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    • Thanks so much Bob. You and Ann are both great. It is my intent when I go with her to her neurologist next week, to make sure we can rule out any other diseases or issues that could be behind this sudden decline. I have to say that she seemed somewhat improved this weekend, which I think is due to all the things that had totally gotten away from her getting taken care of, organized and back in place. It was like Pandora’s Box had been opened and she became overwhelmed, then depressed, then just shut down. Hopefully we have gotten everything back in the box for the time being, and I just pray there is something else going on that we can fix.

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