Some Tips That Might Help

From time to time I like to list the therapies and also the things that have happened by serendipity that have helped my mother do so well for so long, just in case others might be helped. She is 87, was diagnosed with Alzheimer's 8 years ago and exhibited symptoms a half dozen years before that; and yet she is still in the mid-stages of the disease.  

Before you read the list below I need to say this: lots of people with strong faith in God nevertheless have a rocky time progressing through Alzheimer's.  Many factors, including the part of the brain that has been damaged by the disease, affect the progression of dementia and the manner in which symptoms present.

So, don't feel badly if these things don't apply to your situation or do not help your dementia patient. Depending on the stage your loved one is in, all you can really do against such a formidable foe as Alzheimer's disease is to keep hoping and praying and doing the best you can day by day.

Disclaimer:  This is in no way medical advice for others.  See a doctor before you implement any supplements or therapy! Even something that seems so innocuous as caffeine or fish oil can have effects on other medications.  
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1.  Mom has a strong faith that God is in control. 
2.  She journals.  This habit was established long before she had A.D. (in other words, don't buy your A.D. patient a journal and then feel upset when it is not used--but you might consider establishing the habit yourself. Studies have shown that people who journal do better with early dementia...). She uses her notebook as an auxiliary memory, checking it often to see what has happened during the day. She writes things like this:  8:00 Linda brought breakfast.  9:00 love the music that's playing  9:30  bathroom break  10:00 better get dressed.  Things like that. 
3.  There is a clock and a whiteboard with the date and year within her line of vision. 
4.  Her room has a great big south window that floods her apartment with light.  Her chair is in front of this window.  We put a bird feeder just outside the window so that she looks into the light.  I'm convinced that this light therapy is beneficial for her.  
5.  Music that was familiar to her in the past plays all day long.  I load her cd player with three cd's and press "repeat."  She likes jazz, hymns, and barbershop quartets.  She sings along.  She writes the lyrics in her journal.  
6.  She takes Aricept, Namenda, Prozac (antidepressant), Colestipol (cholesterol med that also controls her irritible bowel symptoms) Lutein (to prevent macular degeneration), fish oil, a daily antihistamine (Chlortabs),  a multivitamin for those over 50, and Calcium with D.  
7.  We take her for a walk each day.  
8.  She has a 4-year-old great grandson who comes to visit twice or three times a week.  He doesn't interact much with her but she likes to watch him run around.  
9.  Her granddaughter visits with her once or twice a week.  
10.  I'm  in and out a half dozen times a day.  
11. She likes caffeine (coffee and diet coke, for Heaven's sake don't give your dementia patients a caffeine supplement--many people need to avoid caffeine for other health reasons--check with your doctor).  Some studies have shown that caffeine is helpful to make dementia patients more alert and to do better on cognitive tests.  
12.  We taught her early on that her apartment is her "house" and our part is our house, and that you don't go into someone else's house.  Our situation has been tolerable because we have our own space.  Her apartment has its own entrance--but she doesn't ever leave.  See how unique she is; most AD patients would take off.  Mama doesn't like to move.  Going outside would take way to much effort.  
13.  We pray for her. When she starts doing poorly in any way, I call my prayer group members and we hold her up to the Lord. 
14. She has a cat.  The cat is the best therapy she receives; a constant companion. It is amazing how that cat takes care of her--gets her up in the morning.  Urges her to get out of her chair.  Sits on her lap.  They are buddies.  The cat doesn't like me but that's another story. 


And, here are some factors that you really can't (or shouldn't) duplicate but have made our lives easier: 
--Mom is overweight and does not like to get out of her chair.  Therefore she does not wander.  Sitting and sleeping are two of her favorite activities.  
--She has always loved to journal, to read, and to listen to music; pursuits ideally suited to being an easy-to-care-for Alzheimer patient
--She has few aches or pains.  Almost every day she says, "I'm so lucky to feel so well even though I'm old.  And I think clearly too!"  (Well, when you've had A.D. for 8 years, 50% accuracy is pretty good).  


Let me make clear that my mother is often demanding, sometimes rude, and occasionally throws a fit (a few weeks ago she threatened to call 911 because I didn't answer her call--I was in the shower).  I've nursed her through food poisoning, a broken collarbone from a fall, and pneumonia. Her presence with us is a 24/7 responsibility and is sometimes burdensome. I don't want you to think our path has been all sunshine and roses.  But the general timbre of our lives is, at this point, pleasant.  We are grateful.  


I have compassion for those of you who have, over months and years of time, had a more difficult caregiving journey than mine.  My prayers are with you.  I know our journey is likely to become more difficult.  I also know that the same God who has seen us to this point will see us safely through.  

God bless each of you as you find solutions for your own unique situations.  

Love n' prayers, Linda

Sound Logic

The following interchange reveals why one should never argue with one's mother, whether she has Alzheimer's (as mine does) or not:

Mom: Would you get me a diet coke?

Linda: The dentist says that the acid in the diet coke has hurt your teeth and that you shouldn’t have any for 4 hours before you brush your teeth at bedtime. 

Mom: (aggravated) How old am I?

Linda: 87

Mom: (disgusted) Exactly how much longer do you people think my teeth need to last? 

And...

Sometimes, no, often, I read Scripture and recognize a situation in my life that can benefit from the truths I have discovered.  But once in awhile I discover a truth for myself and then find its affirmation in Scripture. 


In my January 10th post entitled "How to be a Happier Caregiver" I wrote about how I'd discovered that even when my mother is unkind to me, I can emerge from interactions with her feeling content IF I discipline my tongue and respond to her in love. This morning I happened to read the New Living Translation's take on Proverbs 11:17:  "...your own soul is nourished when you are kind, but you destroy yourself when you are cruel." 


Anyone else get a kind of an "aha moment" from that? 


God bless my fellow caregivers today. 


Linda

How to be a Happier Caregiver

Each time my mother takes a downward turn cognitively or exhibits some new negative behavior, I once again have to do some transition work.  I think of it as being somewhat like negotiating a passage across a stream where there is no bridge, just a series of slippery rocks with waters of resentment and anger swirling around my feet. 

These negative emotions are particularly dangerous traps for caregivers who are providing support to people who once supported them but are no longer able to do so.  Guilt, resentment, and a critical spirit are caregiving pitfalls, and to love as we have been loved and forgive as we have been forgiven requires God’s grace.


My mother's latest behavior is to hold fast to the belief that she is not being given an adequate supply of what she needs, whether it be food, affection, or quality time. Any attempt to reason with her elicits this response, "Never mind. A senior citizen is not allowed to express an opinion."  If she is rude and I remonstrate with her she says, "I was just joking. A senior citizen is evidently not allowed to joke."  If she asks how long my brochures (?) say a senior citizen should be left alone, and I say I was just in 15 minutes ago; she becomes sullenly angry and says, "I should never try to tell you anything."  

One cannot reason with a dementia patient. Mom is locked into her current world view.  Although she has happily followed roughly the same schedule of book reading, music listening, exercise and companionship for the past eight years, she has now decided that she is being neglected. 

It is a basic caregiving premise to go with the line of reasoning the patient believes to be true.  When she says sarcastically, "Well, it certainly is good to finally see you," my response should be a warm smile and an affirmation that it is good to see her  too--not, as I'm afraid I've done recently,  an incredulous response such as this: 

"Good Heavens, Mom, I've spent over an hour with you already this morning; sometimes I think nothing would make you happy but for me to spend all day and night sitting three feet from you awaiting your command!" 


I ought to know better, I do know better.  But it is almost impossible not to respond on an emotional level to each new dementia related behavior. I've been leaving her room unhappy and upset and my poor co-caregiver (husband John) has been getting a daily earful.  


Today, I stopped and prayed as I always do before I enter Mom's room, and this time I asked specifically for God's grace to respond in love to her no matter how she came at me.  


I wrote a positive message on her white board, surrounded by little hearts.  I sang out "Good morning Mama!" in loving tones.  When she acted grouchy toward me, I agreed with her that it sure was aggravating not to have anyone to carry her coffee to her chair, and hastened to do it for her.  


This made not one whit of difference to Mom's behavior. If  anything, she became more sullen.  But when I left the room my mood was upbeat and happy, because I had not responded in a negative way to her despite her grouchiness.  


Mom's had a physical. She does not have a UTI; she is not ill or in pain. We've analyzed her medications, we've changed her diet, we've increased her exercise.  We've tried listing the timing and number of our visits on her whiteboard to no avail. She gets plenty of daily light, vitamins, fish oil, conversation, music, etc.; although your suggestions are welcome, I'm not really asking for ideas for needed changes in care. Mom's had Alzheimer's for eight years, and her recent responses have to do with the portion of her brain that is being damaged by the inevitable, irreversible progression of Alzheimer's disease. It is not her fault. She should not be remonstrated with or chastised.  

As always, the needed change today was the responsibility of the caregiver. I can't tell you how light my mood has been all day. To respond in love to someone who is unloving toward us is to emulate our Lord, and that is a wonderful feeling. 

A positive and kind acting caregiver does not necessarily make for a happy patient, but it does make it possible to be a happier caregiver .  


Scripture:  "When I said, “My foot is slipping,” your love, O LORD, supported me" (Psalm 94:18).  

More Helpful Resolutions

This morning I've found a list of ten Caregiving Resolutions that are substantially more helpful than the tongue in cheek comments I posted in my December 31 entry.  These resolutions focus on taking care of the cargiver, and can be found here:  

http://caringnews.com/pub.59/issue.1670/article.7057/

Happy New Year to my fellow caregivers.  May you find courage and renewal in the sure knowledge that the Lord who led you to this place is sure to guide you through it.  Remember Jeremiah 29:11 and be of good cheer!  Blessings, Linda