Pray in All Things

I suppose all mothers have pet bits of advice that, over time, become ingrained in family lore. "Wash behind your ears...put on clean underwear (in case you have an accident, the EMT's won't be appalled by you)...don't fidget in church..."  A small portion of my counsel to my children has been stellar, the greater part nonessential, and some downright ridiculous.

However, I stand by one of my oft-repeated instructions, first utilized in that moment of terrified desperation every parent feels when their teenager slips behind the wheel of a vehicle for a first solo excursion. When this transition came for my 16-year-old daughter I shouted one last word of advice after her rapidly retreating form: "PRAY IN ALL THINGS!"

This has become the customary parting phrase for me each time my adult children walk out the door; "I love you, call me when you are home safe, pray in all things!"

I have realized that although my "shouted advice" version of this counsel may be unique, the familial example of praying in everything did not originate with me. This was brought home to me recently when I delivered my mother's supper plate.  Mom loves macaroni and cheese. Her plate featured a generous portion of this favorite dish, and there was also a half sandwich and a cup of applesauce.  Mom began eating the mac and cheese with relish, inserting little comments of appreciation between bites. "This is so good...so creamy...I love this." After a few moments the timbre of her voice changed and I heard her pray, "Guidance, please Lord, for when to stop eating the macaroni and to pick up the sandwich."

My Alzheimer's mom truly does pray in all things. When faced with anything unpleasant she closes her eyes and prays aloud, "As you will, Lord, as you will." And with increasing frequency as her Alzheimer's progresses, I hear this repetitive prayer, "Guidance please Lord, guidance." 

A friend recently asked me how Mom was doing, and I replied, "You know for how little she has left cognitively, she continues to do amazingly well."  Understand that Mom often thinks I'm her granddaughter, sometimes believes she is in a facility rather than in our home, and recently mistook gas pains for labor pains (she told me it would be time to have the baby soon). Her Alzheimer's diagnosis was ten years ago and she is 90-years-old, but she somehow manages to function pretty well within the familiar environment of her little apartment. 

When I heard Mom pray about how she ought to proceed in eating her dinner, I realized why she is able to continue to manage as well as she does despite the confusion of Alzheimer's; the Lord has not departed from her. The Holy Spirit is described in Scripture as counselor and teacher, and He has not abandoned my mother.

When Mom inquires of the Lord, He does indeed provide her with help.  Following her prayer for guidance during the incident described above, she paused in her compulsive intake of the mac and cheese and appeared to be listening. She then picked up the sandwich with her other hand and began alternating bites of sandwich with forkfuls of the irresistible main dish. 

With my family's history of dementia, I find this evidence of God's continued presence in Mom's life wonderfully encouraging. Once again I've been reminded that the best preparation for a possible diagnosis of Alzheimer's disease in the future is to cultivate a relationship with the Living God in our present. Once we've made the decision to believe in what Christ did for us on the Cross and have asked to be adopted as a child of God, we belong to Him. The confusion of Alzheimer's doesn't cause God to depart from us.

...God has said, “Never will I leave you; never will I forsake you.”

--Hebrews 13:5

If you feel your relationship with the Lord isn't one that will afford you the peace and guidance my mom enjoys, check out this link. 

A Practical Post

I recently received an email from a dear lady who deals with her Alzheimer mom's incontinence. "Do you have to deal with incontinence issues with your mom?" she asked.

Well, yes I do.

My primary ways of offering comfort to fellow caregivers are in the emotional and spiritual realms; this is my assignment from the Lord. "Nuts and bolts" advice is not so difficult to find, but the provision of heart-solace to caregivers is an oft-neglected area of ministry.  However, it occurs to me that those who read this blog regularly might appreciate knowing how we manage the day-to-day caregiving issues that so many have to face. This is not meant to be advice for anyone else; please clear all caregiving procedures with a health care professional who knows your loved one well. 

Bathing--Back in 2007 (where does time go?) I wrote a post entitled Bath Day that you can find here. About the only change we've made in the ensuing years is that I now have Mom wear her Crocs right into the shower and don't remove them until she is seated. After she has bathed she puts them back on so that she never has to walk barefoot on slick surfaces, which, even when she is leaning heavily on me, makes her feel insecure.

Incontinence--Mom wears adult diapers 24/7. I recently found that brands are important; Depends don't work for us, or at least the mid-absorbent pack I recently brought home definitely did not!  We use Sam's Club and/or Wal-mart's store brand. We are so blessed that she has healthy skin that doesn't chafe or get diaper rash easily, but when she does we use Boudreaux Paste, a product whose full name annoys me but is the best I've found!

Medication--Mom takes two Alzheimer's drugs (work out a plan with your doctor), an anti-depressant (I think this is so important for Alzheimer patients), an antihistamine for her severe allergies (most antihistamines are contraindicated for dementia patients, again, check with your doctor), and a cholesterol lowering medication that was prescribed off label for her irritable bowel symptoms (Colestipol/colestid). People who have had Cholecystectomy (gall bladder removal) as Mom has often need a medication such as this, but I've always thought it might also be useful for those who have lost bowel control or have irritable bowel symptoms as well. Let's repeat my litany: check with your doctor! 

Mealtime--Mom very much prefers to be served meals in her recliner.  When she moved in with us I very much felt she should sit at the table with us at mealtime. This became a "choose your battles" issue which I finally allowed Mom to win, and she is much happier.  We have a wooden lapboard that fits across the arms of her chair and a side table to hold her drinks. The chair is leather and has a cloth cover that has to be laundered regularly. But, the key words are she is much happier.

Entertainment--Music from Mom's own C.D. collection plays constantly on the "repeat" setting. It was difficult to find a CD player for her--everyone now uses their MP3 players--but I found a 5 CD changer at Amazon and hooked my iPod speakers to it (WHY didn't the CD player come with speakers?).  Music is vital for Mom's contentment level, and the familiarity of traditional hymns is the most powerful mood enhancer for her. Films that have very little dialogue are best; Mom can no longer follow rapid fire dialogue that characterizes most movies. Bambi is a favorite, and Mom loves the That's Entertainment films. 

Reading material--sometimes people are surprised that Alzheimer patients may continue to read. Mom's short term memory is indeed shot, but in the moment she is in she is still able to comprehend a sentence or two of meaning. She loves the My First Little House books, and is not offended when I offer her beautiful children's picture books, but she also very much enjoys devotionals such as Richard Carlson's Don't Sweat the Small Stuff  and Max Lucado's writings.  She also peers intently for long periods at a daily newspaper, so I guess she retains some meaning or at least a feeling of being a part of the world from that. And, of course, I have her read a daily selection from the devotional I wrote just for her, Beautiful in Each Season.  The selection of music and reading materials depends entirely on the individual preferences of your patient. What did he/she enjoy pre-Alzheimer's? Find straightforward or simplified versions of what was enjoyed in the past. 

Schedule--I've printed her daily schedule on a piece of posterboard and placed it within her line of vision, along with her clock and whiteboard that has the day's date written in large letters. These things help her very much. Further and more detailed information is available in the post entitled How We've Managed Thus Far,

Phone--Mom loves her one touch phone. She can call me any time by lifting the receiver and pressing the key printed with my name. She is still able to read so instead of photos I printed names of family members on each key and programmed the phone with their numbers so that she is always able to reach someone.  When she calls several times in an hour I put a sign on the phone: "Linda is taking a nap, call if there is an emergency." This has worked so far. 

How I cope with "Why has this happened to us?"--A real change in my perspective occurred with the experience I describe in this post entitled Farther Along...

 Further information of the practical sort is available in the post entitled How We've Managed Thus Far. 

I'm praying now for every caregiver who reads these words, and also for your precious care recipients.  My heart goes out to you.  Let's pray for one another as we walk this caregiving path together. 

Healing Balm

I have suffered an attack of hip bursitis, which, as a helpful internet source tells me, occurs mostly in  middle-aged and elderly women. 

Sigh.

Bursitis often erupts following unaccustomed physical exercise. I had begun a brisk walking program, and in a burst of overconfidence chose to do my middle-aged/elderly version of a jog up and down a small hill adjacent to our house.

My right hip now hurts, especially at night. I am biding my time and praying to avoid things like doctor visits and cortisone shots, and if you would pray this with me I would be very grateful.

This morning I made my awkward, grumbling way out of bed and staggered over to the mirror that hangs above the old oak dresser. I'd not slept much, and though I ought to have reached for my Bible, had spent fruitless time worrying about my Alzheimer's mom and the future instead.  I leaned toward the mirror and examined the circles beneath my eyes in close detail, which did not improve my mood. Quoting Gideon, I addressed my reflection:  "If the Lord is with us, why has all this happened to us?" (Judges 6:13).

I now feel silly and melodramatic as I confess how upset I felt over an aching back and my healthy, albeit dementia-impacted, 90-year-old mom.  But there it is; this morning I placed my relatively minor trials on a par with being under siege by Midianites, and I felt I understood Gideon's plaintive question. Why, Lord?  If You are with us why do these things happen?

I wept a little (self-pity, no doubt) and then reached for a tin of Cloverine salve and applied the comforting stuff to my reddened nose. My poor nose is often irritated this time of year with seasonal allergies, and I'm always a little surprised at how much discomfort a stinging, chapped nose can cause. But when I carry my trusty container of Cloverine with me and reapply often, I have no discomfort at all.

At this I felt the little heart nudge that tells me the Lord would like to make a point, although I admit I was a bit hesitant to accept an analogy between the healing balm of Gilead and my humble pot of Cloverine. But the connection is obvious, even to a middle-aged (or elderly) woman who has a hitch in her get along and an Alzheimer's mom: I can receive healing and strength if I will liberally partake of Scripture and reapply as needed.

Cast all your anxiety on him, because he cares for you.  

--1 Peter 5:7

Respite

When I did an internet search for the word "respite," here is what I found:

res·pite

ˈrespət,rēˈspīt/

noun

noun: respite

1.

a short period of rest or relief from something difficult or unpleasant

synonyms:

rest, break, breathing space, interval, intermission, interlude, recess, lull, pause, time out

Every caregiver needs respite. I remember reading that Susanna Wesley would throw her apron over her face and at this sign, her 19 children knew she was not to be bothered because she was praying.  That was Susanna's respite, and bless her heart, the Lord did help her as evidenced by by the Godly children she raised (her boys John and Charles began the Methodist church, among other accomplishments).  

I find respite in prayer too, but unlike Susanna, I'm able to be outside quite often. This suits me, because nothing refreshes my spirit more than finding God in nature. I return from my daily walks a calmer, kinder caregiver. 

If you are on the front lines of caregiving, find your respite first in the Lord, and then look for that much needed oasis of rest (break, breathing space, time-out). God can strengthen us to bear burdens we never thought we'd be able to carry, but regular times of rest are a part of any strengthening program.

My respite comes in spending time on the farm with my husband, daily walks, and taking photos that attempt to capture the beauty in nature that I so love.  If you'd like to see the photos from tonight's appropriately spooky-for-the-season walk, visit the post at my farm blog entitled October Sunset. 

Good Times

Many caregivers find themselves members of the sandwich generation, caught between the needs of aging parents and growing children.  Because my mom's Alzheimer's has spanned ten years of time, I've experienced many sandwich-type moments, such as the day I found myself bathing my slippery and unhappy toddler grandson in the morning and my slippery and unhappy Alzheimer's mom that same night.

This time of life offers many moments of joy along with some times of frustration and exhaustion.  It is mostly good, and the sad or bad times cause me to cry out to the Lord, and that's good too. 

Today I've written a little treatise on the sadness and joy of being parents of adult children.  If you would enjoy reading about the yummy fall menu we served for a family dinner this weekend and how our momentary pang of sorrow turned to peace when our children pulled out of the driveway for their respective homes, hop on over to "Good Times Then and Now."

Struggle and Scripture

I'm struggling.  Especially in the mornings I feel so sad. As Mom's symptoms increase, I grapple with fear of how her Alzheimer journey might end.

For so many years I felt strong empathy for Mom, and I still am able to express love and minister to her as I've always done. But the other day she choked on a piece of food and I remained completely calm.  I assessed whether she needed the Heimlich, and saw that she did not (she was able to gasp for air and talk). I stood by, offered tissues, prayed, and considered whether I needed to call 911; although she could breathe, it was a violent and long lasting episode. In the middle of it Mom became angry that I wasn't "doing something" and between coughing fits she yelled at me for not being more concerned. That's when I knew she was all right.

She was mad at me the rest of the day, and I guess I can understand. Had it been one of my grandchildren I would have exhibited a much higher degree of anxiety. But because it was my 90 year old mother who has had Alzheimer's for ten years, and because I feel a daily dread of how her life might end and have steeled myself by envisioning various scenarios, I essentially detached emotionally once I'd ascertained I'd done everything I could do to help her.  She wanted me to act more upset, and clearly did not believe me when I patted her knee and said, "I'm sorry, you just have to cough it out."

"Easy for you to say," she said.

But it isn't easy. I don't like being so close to the Valley of the Shadow with my mother. Death is ugly, and while watching a loved one succumb so slowly to death by Alzheimer's is frightening, even more appalling is to be confronted by the possibility of an imminent and struggle-filled passage from life to death. In darker moments, I feel close to terror. It may sound wrong to say what is true; it is the discomfort of this situation that I hate.  I am uncomfortable with grief and fear, and although I've suppressed it, I do suffer a terrible empathy for my mother because she has lost touch with reality.  This is hard, and I don't like things to be hard.

If you read my posts often you will know this one is uncharacteristically dark. You will also know  that although I'm sad, I'm not in despair, and even when I'm afraid, I'm not without hope.  I felt led to share with you as honestly as I could how I've been struggling, but I'll close with the reasons I have courage for the path ahead:  

We are pressed on every side by troubles, but not crushed and broken. We are perplexed because we don’t know why things happen as they do, but we don’t give up and quit. We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going. These bodies of ours are constantly facing death just as Jesus did; so it is clear to all that it is only the living Christ within who keeps us safe.

--2 Corinthians 4:8-10 TLB

So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand.
--Isaiah 41:10 NIV

The Lord is my light and my salvation—
    whom shall I fear?
The Lord is the stronghold of my life—
    of whom shall I be afraid?...

For in the day of trouble
    he will keep me safe in his dwelling;
he will hide me in the shelter of his sacred tent
    and set me high upon a rock...

Though my father and mother forsake me,
    the Lord will receive me...

I remain confident of this:
    I will see the goodness of the Lord
    in the land of the living. Wait for the Lord;
    be strong and take heart
    and wait for the Lord.

--Psalm 27:1,5,10,13-14 NIV

But I trust in your unfailing love;
    my heart rejoices in your salvation. I will sing the Lord’s praise,
    for he has been good to me.
--Psalm 13:5-6 NIV

Blessed be His Holy Name! 

Even to Your Old Age

My mom was diagnosed with Alzheimer's in April of 2004 and is ninety years old.  Sometimes she behaves badly, and I've conditioned myself to attribute behaviors that would once have been categorized as sinful as now being just symptoms of her disease. That perspective is mostly accurate. Brain damage, confusion, physical discomfort, and frustration can cause temper outbursts and angry responses that do need to be accepted as disease symptoms.

However, I have to be careful not to interact with my mother only as a patient. She is still in possession of a living faith in God. She is still a human being, and thus is capable of sinful behaviors. And, as the following account reveals, she is still capable of conviction by the Holy Spirit that results in repentance. 

Mom had tried to reach me on her chair-side phone, and although I was just in the next room, I was on another call. So, my phone service sent her to my voice mail. Oh how I try to keep mom from ever getting that voice mail message, because it makes her angry every time.  I've re-recorded the message numerous times so that the current version features a placating, almost pleading tone of voice that assures callers I'll be back to them just as soon as I possibly can, but to no avail. Receiving a recorded message when she had hoped, as she always says, for a "live human voice" triggers vindictive anger in my mother, and in certain moods she will try to get even with me for the vexation this causes.  It took me a few minutes to finish with the other call, and in the interim Mom wrote in her journal, "I'm trying to think of something that will really upset Linda."  Her solution was to scream and pour her diet coke out onto the floor, and when I ran into the room she cut loose with a tirade of vindictive words. She said that for the rest of her life she would do everything she could to torture me and make me miserable.

She was trying to hurt my heart and although I remained calm and did not show it outwardly, she accomplished her goal. I went out of the room and prayed. I called two friends and asked them to pray for Mom. I then sat in a chair just outside her doorway and prayed some more. When I heard her crying I entered the room.

She was repeating, "Lord forgive me, Lord forgive me!" When she saw me she said, "I've always had this problem with pride and I am asking God's forgiveness, do you think it is too late?"

I assured her it was not. We prayed together. My heart felt the solace of Mom's sincere regret; although she had forgotten she had lashed out at me, she was remorseful because the Holy Spirit had convicted her of sin.  I assured her that the Lord had forgiven her, and in my heart I forgave her as well.

The best preparation anyone can make for the possibility of an Alzheimer diagnosis in the future is to nurture a relationship with the Lord in the present. It is incredible to me how the Lord continues to speak to my mother even in these difficult final years of her journey through Alzheimer's; Mom's faith is alive and well even though her thinking ability has been profoundly compromised.  God does not ever leave us or abandon us. We can trust Him to work in our minds and hearts until the day He releases us from these broken bodies and brings us home. 

"Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you" -- Isaiah 46:4