Saturday, January 26, 2013

How We've Managed Thus Far....

From time to time I'm asked to summarize the measures we've taken for my mother, who, though she was diagnosed with Alzheimer's disease in 2004, continues to function well enough to do well in what is essentially an assisted living situation. 

My mother is unique in that although she is 88 years old and was diagnosed 9 years ago, she's still pretty much ok in the moment she is in.  Her short term memory is mostly gone, but, perhaps because of her faith in the Lord and certainly because of her laid back, take-it-as-it-comes personality, she's mostly at peace about not remembering.  That's unique too!  I could see myself having to be sedated because of panic over not knowing what's going on.  Not Mom.  She sits in her chair, content with a stack of books, her notebook, and soft music playing in the background.  The only clouds on her horizon come from my insistence that she take a daily walk and bathe occasionally! 

I think the biggest part of how Alzheimer's affects an individual has to do with the particular portion of the brain that is happens to sustain the greatest damage first.  My theory is that the Lord wanted me to write a caregiving book and so He made special arrangements for Mom to progress very slowly through the stages of the disease.  My quota of actual physical labor has been light when compared to the emotional stress I've endured, and so I've had time to record the guidance the Lord has so graciously provided in response to my cries for help! In turn, other caregivers whose workloads are heavier have been blessed by the comfort God has provided Mom and me. 

Here is a summary of the caregiving strategies that have been helpful for my unique mother in our unique circumstances.  These aren't intended as a roadmap for anyone else's care recipient; they are meant only to serve as a springboard for ideas that might facilitate your own caregiving journey:
  • Prescription drugs: Prozac, Namenda, Aricept, Colestipol.  It took about a year for Mom to adapt to the Namenda and Aricept--I always tell people to give these drugs a decent amount of time to work.  Side effects such as digestive discomfort or bad dreams tend to fade over time.  The anti-depressant Prozac helped Mom greatly.  Mom experienced improvement after about 6 months on these prescription drugs.  
  • A note about Colestipol--this is a cholesterol lowering drug that is prescribed off label for people who have too much bile in their system following gall bladder surgery.  It keeps Mom from having irritable bowel symptoms.  But I wonder--has keeping her cholesterol lower than it otherwise would have been slowed the progression of her Alzheimer's?  I think it is important to treat even moderately high cholesterol in dementia patients.  Studies have shown that what is good for the heart is good for the brain.  
  • Supplements:  fish oil, lutein, 1/2 daily multi-vitamin (one-a-day women's petite vitamin, half dose daily)
  • Non-scrip drugs:  antihistamine for Mom's chronic allergy symptoms--but check with your doctor because most antihistamines are contraindicated for Alzheimer patients.
  • We take Mom for a daily walk of about l/4 mile.  She hates it.  She complains.  But she begins to decline cognitively almost immediately if we skip that daily walk.  It is really important for her.  
  • Her apartment has a large, south facing picture window that floods her chair with light even in the winter.  Some studies have shown that adequate light exposure reduces "sundowning" (night wandering) in Alzheimer patients.  When we take Mom for a daily walk and make sure she gets plenty of light, she doesn't get up in the middle of the night.  So far.  
  • Music--we keep music playing constantly.  At first I chose the musical selections but then we unearthed Mom's vast C.D. collection, which she'd compiled during the last ten years or so that she lived on her own.  I also sorted through her old record albums and ordered some of the ones I remembered her playing when I was growing up.  The difference these familiar songs made for her is amazing.  AMAZING.  She sings along.  Memories are triggered.  She gets pleasantly nostalgic and feels happy.  I've read that a lot of Alzheimer patients love to listen to familiar hymns, and so does Mom, but her own music collection has blessed her even more.  
  • That cat.  Mom loves her cat (there was an adjustment period; she did not like cats in her previous life...but a cat is the easiest animal to care for so when I read dementia patients benefit from pets, a cat it was).  Kitty has almost mystically adapted to Mom's needs, providing her companionship and affection and even meowing loudly and pawing at her to encourage her to get out of bed in the mornings.  
  • Journaling--I don't think this would be much of a help for someone who already has dementia and did not journal in the past, but Mom is never happy without a pen in her hand and a notebook in her lap.  Her journal has served as an invaluable tool for us--when something bothers her she writes it down and then I review her notes each evening.   Mom writes her thoughts, writes what she sees going on in her environment (birds at the feeder, weather report), and I know this has helped maintain cognitive function.  It is worth a try to make a notebook and writing tools available to dementia patients...but please don't nag them if they don't pick up journaling as a new skill...
  • The whiteboard and clock--Mom really depends on both.  I write the date and any pertinent notes on her whiteboard and the clock is within her line of vision or she's not happy.  
  • A schedule...I've recorded Mom's schedule on poster paper and taped it to her door. This has been helpful.  
  • A phone that allows her to call me with one touch.  
I hope these things are of help to you.  God bless you as you care for those who can't remember.  


  1. Excellent list, Linda. Have you interviewed her? I just interviewed my husband and it is so revealing. He doesn't know I have a blog, but he does know I write about dementia for my counseling classes.

    Hugs and prayers,

  2. I’m surprised to see that your mother is receiving chlortrimeton (chlorpheniramine) on a daily basis, or at all. This is a drug with proven anticholinergic effects. As such it would conflict with the Aricept she is taking. Anticholinergics are thought to exacerbate Alzheimer’s. You may want to talk to your doctor/pharmacist about that…

  3. Thanks Mary. I will check with my doctor about this and do some research myself (since the doctor is the one who put Mom on the chlor-tabs along with her AD meds). Mom has severe seasonal allergies (hives, itching, etc.) and must take a maintenance dose of some sort of antihistamine. She also suffers incontinence, and one of the effects of chlortrimeton can help with that. As always patients must check with their physicians/pharmacists and research drug interactions themselves. My list of medications, as I said, is not a recommendation for anyone else. Mom's done so well in the 9 years since her diagnosis that I feel we've hit on some combination of meds that are uniquely well suited for her, some perhaps working in ways we don't know. Mom's dosage of chlortrimeton is small. I think perhaps the article about avoidance of antichlorinergic drugs in Alzheimer's patients refers more to anti-psychotic drugs than to low doses of antihistamines given for allergies. But as I said, thank you, and I will certainly pursue this further.