Caveat...

Regarding the list of caregiving strategies in the "How We've Managed" post below...please check with your physician before combining an antihistamine (or any other non prescription drug or supplement) with Aricept (see Mary's comment and my reply under the "How We've Managed" post).

Don't give your patient any supplement or non-prescription drug without asking your doctor and pharmacist first, and even then research drug interactions yourself.  Always take a full list of medications, prescription and non-prescription, to your loved one's doctor appointments.

My thanks to Mary, who noticed the possible adverse effects of Mom's chlor-tabs with Aricept, and took the time to draw it to my attention.

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.  

Kansas Light

 Although the temperature outside today was a springlike 50 degrees, I was feeling sad and did not want to take a walk.  I forced myself to go anyway and found my depression lifting.  It was a beautiful day. 

When I was in college many years ago, an art professor told us he'd spent the summer in France.  The French countryside reminded him very much of Kansas, and even the light seemed familiar to him because, he said, the light in Kansas is beautiful.  Now, a lot of us know that Paris is called "The City of Light," but I don't think many folks outside our state think of Kansas as being particularly well lit.  At that early stage of my life I hadn't given it much thought myself.  I'd always lived in Kansas and the light was just, well, something to see by. 

But you know, that professor was right.  Although we've had two drought years back to back, and even though the countryside is dressed in January drab brown, our sky here is still lovely.  The sunsets are gorgeous as always, but even at mid-morning or in early afternoon the light truly is beautiful.

It is very important for caregivers to take refreshment through time away from responsibilities to loved ones, and one of the ways I find this is through my daily walk.  I feel very blessed to live in rural Kansas--the lighting here really is wonderful! I encourage my fellow caregivers to find renewal through time out of doors exploring the beauty of your own corner of the world. 

Phone photos snapped on my walk early this evening:

Snow geese flew overhead, flashing like glitter as their wings covered white bodies then raised again to reflect the sun. 

Humble broomweed turns to gold in that warm Kansas light. 

Late afternoon sun highlights the uppermost branches of these cottonwood trees.  That's our yellow house in the background, though it isn't quite THAT yellow...again, that warm golden light does its magic. 

Better Than Prozac

This is an entry for caregivers who are striving to follow Christ in their every day lives. 
I always hope that if people need to get past my Christ-centeredness, they can, but I do have to say they don't know what they are missing.  And that is what this entry is about; what we miss when we resist the Lord. 

And also let me say upfront that I have no objection to anti-depressants.  My mom takes Prozac and it helps her greatly. I believe the depression that accompanies Alzheimer's is physiological, caused at least in part by the changes occurring in the brain.  And there are many other physical and emotional conditions that can benefit from a serotonin uptake inhibitor such as Prozac, or some other class of anti-depressants.  Depression is a horrible thing.  Emotional pain from grief and loss can be too much to bear.  I have nothing against pain relief. 

I took Prozac briefly, years ago.  It did make me feel a lot better.  It also made food taste just incredibly wonderful to me.  I am overweight because of a combination of rebellion (you can't tell me what I can and cannot eat) and because I have learned that I can stifle emotional and spiritual discomfort by feeding the physical.  I am not a "foodie;" love of food has never been my difficulty.  Prozac made me into a foodie.  Just what I didn't need; especially since part of my depression stemmed from my inability to control my eating! 

Anyway.  I want to share with you what happened to me this week.

I began to obey the Lord!  I had been resisting him, and I started obeying!  After just two and a half days of increased intake of Scripture and following a diet that, if I continue, will lower my cholesterol and allow me to wean myself from the prescription antacids I've taken for years, I was euphoric.  I was going around with a big, sloppy smile on my face feeling blessed, free of the struggle of resisting the Holy Spirit, at peace.  It really was better than Prozac.

Of course, then the rot set in.  The devil doesn't leave us alone when we are being obedient.  And even though I'd felt a warning that the enemy would be coming for me, I fell.  I spent yesterday afternoon experimenting with the photo program on my computer rather than posting this blog entry as the Lord had nudged me to do. Last night found me sitting in front of the TV eating chips and nacho cheese.

Well, praise God for His grace! I am so grateful to live in the age of grace, aren't you?  I know all I need do is follow the well worn path of repentance, and peace can be mine again. Lord, please forgive me, nothing compares to what I have in You! 

Here is how this entry pertains specifically to caregiving: taking care of a loved one who has dementia is painful.  It makes us want to seek pain relief wherever we can find it.  Sometimes we feel rebellious about the workload and heartache we've been assigned, and rebellion closes the heart to God. Furthermore, taking solace from sources other than the Lord brings the physical into ascendency.  Since we are meant to discipline the flesh through submission to the Holy Spirit, giving way to the flesh takes us out of balance.  Resisting the Holy Spirit has made me a very cranky caregiver, but I didn't feel strong enough to cope with the well of grief that came surging to the surface whenever I would declare a fast from overindulgence. 

The Lord is so patient with us.  During those seasons when we are stunned by pain of grief and  immobilized by sorrows too deep to bear, He abides with us.  As my mother once said, "I often have let go of the Lord, but He never let go of me." 

As I moved into obedience I became cognizant of sorrows I didn't think I was strong enough to bear.  Yesterday afternoon (before the nachos) I found I had risen shakily to my spiritual feet by obeying the Lord and discovered to my overwhelming gratitude that His yoke truly is easy, His burden light.  He is strengthening me to bear the grief of my mother's slow dying.  I felt like Theoden when Gandalf freed him from Saruman's spell:  "Breathe the free air again, my friend!" 

It is a difficult truth that our only true comfort lies in the arms of Him who has allowed us the grief and pain we face.  But it is a incredibly freeing and joyful release to stop resisting Him and to run into His embrace.  That's where I'm headed now and I invite you to join me!  There is no other solace so sweet.