Monday, January 1, 2018

Even to Your Old Age...

Mom at age 93 with her youngest great-grandson, Isaac, 2.   

  When a parent has Alzheimer's disease, it's nearly impossible to avoid a feeling of dread: what if I fall to this disease as well?  Despite near constant reassurances from the Lord ( not be afraid, I am with you1, even to your old age and gray hairs I am he who comforts you2, there will be showers of blessing3...), I have never managed to fully release my dread of the future.

  A recent conversation with my mother has finally ushered me to a tremulous acceptance of God's promised grace in any situation we may face.  Mom is in her 14th year since her Alzheimer's diagnosis. She is losing her vision due to macular degeneration. She can't stand by herself and has to have assistance with every activity of daily living. And yet she said, "I am so blessed and comfortable. I am so grateful for the Lord's presence with me..."

   For emphasis she patted her chest and exclaimed, "He's right here!  With me!  In my heart!"

  And then she sought eye contact with me and leaned forward.  "I know Heaven must be more wonderful than this, but it is hard to imagine being any happier than I am now."

  I came away humbled.  God's grace has covered my mother as she sits in her recliner in the nursing home, no longer able to read, with only her music for company.4  I have seen with my own eyes how the Lord has provided for Mom, and I know He wants all of us who belong to Him to understand that He will provide just as abundantly (though perhaps differently) for us. 

1 Isaiah 41:10
2 Isaiah 46:4
3 Ezekiel 34:26
4 At this stage of her disease process, Mom much prefers the quiet and solitude of her room at the nursing home to group activities. She has frequent, one-on-one time with staff, friends, and family.  

Wednesday, December 27, 2017


Four little "mercy-drops" right here: my grandchildren. They are such a joy!  
When I visit my mother at the nursing home, I spend most of my time singing familiar hymns to her. To her credit, she has never once winced or held her ears.  I always think the Lord must filter my not-so-great singing voice for her, because she often exclaims, "Beautiful!"

One of my most vivid memories of childhood is hurrying home to sing a new song that I'd learned at school for my mother.  I don't believe her exclamations of praise were artifice; she was genuinely delighted by her little girl's a cappella performance of I'm a Little Teapot and other childhood classics. The thread of continuity between her approval of my attempts to entertain her back then to similar attempts so many years later affirms that Alzheimer's has not stolen the lifelong, love-based and sustained-by-grace relationship my mother and I share.

One of our favorite hymns is Showers of Blessing (lyrics by Daniel W. Whittle, 1883). I always feel the warmth-stirring nudge of the Holy Spirit's promise as we sing this hymn together:

There shall be showers of blessing:
This is the promise of love;
There shall be seasons refreshing,
Sent from the Savior above.
  • Refrain:
    Showers of blessing,
    Showers of blessing we need:
    Mercy-drops round us are falling,
    But for the showers we plead.

As Christians we have so many wonderful promises from the Lord. We search His word and believe by faith that He will come back for us and that we will share eternity with Him, enjoying a caliber of joy and fulfillment that our minds and hearts can't yet comprehend. Meantime we have those mercy-drops falling around us: pleasures and joys that we sometimes take for granted. Singing with Mama is one of those mercy-given blessings for me.

The constant sorrow of my mother's Alzheimer's has been a weight on my heart for 14 years now.  The Lord has sustained me in my grief and has even blessed me through it, and I am grateful. I've received many personal promises from the Lord during this time: I believe a more settled time of peace and joy lies ahead; I do believe that I will yet see the goodness of the Lord in the land of the living.* Meantime there are present signs of future fulfillment all around us, even as He sustains and blesses us along the sometimes rocky paths that bring us home.

*Psalm 27:13

Wednesday, December 6, 2017

Memories of Grandma

Grandma and me, picking wildflowers in the road ditch outside our house.  I was 3 going on 4-years-old, and the curly hair I inherited from Grandma had escaped my bandanna in front.  
I'm feeling grateful today for my mother's mom, my Grandma Opal, who always welcomed us to her home whenever we wanted to come. She cooked and cleaned without complaint when all of her produce had to be picked and canned from the garden, and laundry was done outdoors in a hand-cranked wringer washer.  She offered us feather beds with line-dried, starched and ironed sheets topped with colorful quilts she had made herself. I don’t know how she did it all and still had energy to hurry to greet us on the sidewalk outside her house with arms spread wide for a hug.  And when we left she always cried, and stood waving a dishtowel from her open kitchen door so that when we turned onto the road that ran adjacent to her house, from a half mile away we could still see that towel waving furiously.  Going to Grandma’s house was the greatest joy of my childhood, and I understand now what I did not know then, that her sacrifice of love was sheer, hard labor that kept us fed and comfortable when my cousins, aunts, uncles, parents and I crowded her little house with our noisy and messy presence.  She made it obvious to us by her smiles, hugs, and attentiveness that we made her very happy. 

Late in her life, Grandma succumbed to dementia. She became demanding, and ended her life on a tumultuous note as her suffering caused her to cry out in anger and pain.  In those days before drugs that would have helped rather than sedated, she was not an easy patient. But that final season of her life was relatively brief, and it does not taint my memories of her as a woman who gave selflessly and joyfully to her family despite the hardships she faced.  I remember her with love and gratitude today, on the 114th anniversary of her birth.  

Monday, November 13, 2017

Feelings and Words

I was my Alzheimer's mom's primary caregiver for over 12 years, and during that stretch of time I also experienced several unpleasant episodes during which I became the patient.  I've always thought the Lord allowed me those relatively brief seasons of infirmity to teach me what life looks like from the other side of the caregiving coin.

From my own experiences and those shared with me by others, I've become aware of how difficult it can be for patients and caregivers to communicate with one another. Because of vastly different perspectives and motivations, we don't hear one another accurately, and to make matters more complicated, we often do not say what we really mean.


Says:  I'm angry that you don't visit more often.
Means: I'm lonely and afraid.

Says: I don't need you to do anything for me.
Means: I don't want you to resent me (and I may actually welcome loving acts of service).

Says: You just make me want to scream.
Means: I don't realize I'm forgetting things and it seems to me as though you are the one who has changed.

Says: Our relationship isn't what I wish it was.
Means: I miss my little boy/girl and the love we used to share.  (Dementia patients remember the past most clearly).


Says:  Mom (or Dad) has just given up.  She needs to try harder.
Means:  I am grieving the parent who was vitally interested in me and who supported me.

Says:   If Mom doesn't keep doing things she'll hasten her own demise.
Means:  I resent my parent for no longer providing for my needs.

Says: We don't want to spoil Mom by doing too much for her.
Means: I am avoiding the transition into the caregiving role.

To further complicate matters, we are most often unaware of the divide between what we are feeling and what is actually true.  We suppress our emotions of grief and fear but they influence us nonetheless, and we end up trying to find logical words to explain how we feel.  We need to accept that the conclusions we draw during the upheaval of changing relationship roles may be inaccurate. An awareness of the way our hearts and minds try to cope with fear and grief can help us to be more forgiving toward one another.

Thursday, October 19, 2017

From My Hospital Bed...

John delivers the flowers sent by our kids and grands.  
I would have hoped never to write a post with the title I've given this one.  

I must confess that during the last few years, and against all my best advice to others, I have let my own health go.  I really had planned to see my nurse practitioner for routine blood work and screening tests, but I thought I'd do that just as soon as I'd lost a few pounds and had spent some focused effort getting into better shape.  In the interim, grandbabies were born, Mom's needs increased, and we became increasingly busy with the stuff of life. 

The pain came in the middle of the night: all-encompassing and overwhelming.  I thought it was a reaction to an antibiotic I'd been prescribed, and so I "toughed it out." Once the pain was gone, I gave it no more thought.  A few months later the pain returned, but this time I thought it was my version of a virus my grandkids had suffered.  And so I waited two days, two days, before I went to the emergency room.  

In retrospect I can't believe my stupidity.  It could have been a heart attack.  As it was I waited nearly too long for an emergency cholecystectomy (gallbladder removal).  Much longer, the surgeon said, and it would have ruptured, or caused other complications such as pancreatitis.  "It was a bad one," he said.  

Everyone together now, "DUH, LINDA!" 

This is a cautionary tale for my fellow caregivers: do not neglect your own health.  Get those routine screenings.  Fear of medical procedures and personnel is a malady that often strikes caregivers in the wake of a white-coated professional's delivery of a terrifying diagnosis for a loved one, but you must not let this fear keep you from taking care of your own well-being.  I'm here to write this post only because we live just 20 minutes from the nearest hospital, and I was met with knowledgable experts who knew what to do to ease my pain, save my life, and then send me on my way a mere 3 days later.  

This is also a word of warning to the families of caregivers: when the person who makes all of the health decisions for your family falls ill, don't expect the store of wisdom and knowledge upon which you've come to depend to extend to any kind of common sense regarding the caregiver's own condition.  

My husband finally said, "Let's go to the E.R."  

He was probably surprised when I said, "OK."  

At the hospital I was dimly aware of the efficiency and knowledge of the people who provided my care, but it was the occasional word or gesture of kindness that meant the most. People who are afraid and in pain will trust kindness when they do not trust (or are frightened by) medical procedures.  I learned that fear can be medicated (would you like a sedative?) but it can't be alleviated apart from genuine caring.  The takeaway for this caregiver turned patient is that our loved ones don't care so much about our skill as they do about our love; kindness reassures where expertise might be ignored or misinterpreted.

This is day nine following my surgery, and I'm feeling better.  Friends and family stepped to the plate and took over visiting Mom so that she has not noticed my absence.  Two friends delivered meals that have nourished us body and soul.  And today I mapped out a health plan with my doctor that includes those overdue screening tests that I just hadn't got around to doing.  

God has extended His grace to me through the kindness and skills of human healers and caregivers, and I am humbled and grateful.  

Sunday, September 24, 2017

Letter to A New Caregiver

Dear New Caregiver,

I'm writing to you because I've heard you are at the beginning of an Alzheimer's journey with a loved one. I want to tell you it is going to be ok; you will find help when you don't expect it, respite when you sense you ought not to need it, and heart-healing even if you don't realize your heart has broken.

I want you to know that although God may seem silent and far off, that He hasn't abandoned you.

I remember the days following my mother's diagnosis with Alzheimer's disease.  For weeks and even months, I observed an extended wake of grieving over the loss of my mother.  But...she didn't fade from view,  and she certainly didn't die.  She was contrary and irritating, vulnerable and sweet by turns, but she remained very present.  Gradually I relaxed; my mother obviously wasn't going anywhere for a long time yet.  There are many blessings that unfold gently during a long goodbye, and one of these is time to adapt to change.

God has been so kind to us. I suffered no sudden shock of parting, no terrible, tragic blow.  My mother's Alzheimer's diagnosis merely provided a visible sign of her mortality; I could no longer hide from the fact that most of us outlive our parents. And so, at age 50,  I began the too-long-delayed process of becoming a mature adult, finally able to function without the support of my mother.

Change is difficult, growing up is painful, and there have been challenges along the way. But most of these challenges have fallen more in the category of aggravations rather than tragedies. And now--thirteen years following Mom's diagnosis-- when I make the drive to the nursing home, I am still able to glean encouragement from my mother's smile, comfort from her hug, and to bask in her sincere gratitude for all I do for her.

There have been many changes over the course of Mom's Alzheimer's, but surprisingly, most of them have, in the end, been positive.  The struggles we've faced have been temporary, and have taken us to a new status quo where we almost always have had time to gather our wits and adapt before the next challenge has arisen.  We are at one of those resting places right now; Mom, at age 93, is doing fine, and I've adapted to visiting her only 2 or 3 times a week.  I understand now that these gradual changes will greatly ease my grieving process when Mom finally goes home to the Lord.

This post comes with a prayer that it finds its way to the heart of someone who will find it encouraging today.  God bless.

With love and prayers,


Friday, September 15, 2017

Questions You Might Not Think to Ask...

My mom has been in nursing home care for a little over a year, and we are doing well.  The adjustment period was rocky, though, for Mom as she coped with confusion and anger, for the nursing home staff as they learned to know Mom and her unique set of needs, and for me as I attempted to release old responsibilities and accept new ones.

I admit I had thought that once Mom was released into the care of others, that, other than visiting her as often as I could manage, my responsibilities toward her would be over.

Was I ever wrong!

I feel I must call a warning to families preparing to place a loved one in nursing home care: your responsibilities toward your loved one will, for a season of time after placement, remain somewhat demanding.  If you missed it, please read this post: What I Didn't Know.  (Don't worry, I didn't include EVERYTHING I didn't know--it isn't an encyclopedic post...).

Today I've compiled a list of questions I ought to have asked before we chose my mom's nursing home and in the early months of care:

1. We would like to share a meal with our loved one occasionally.  What is the protocol for that?

Me, looking clueless. 
 We are so blessed at my mom's small nursing home--any time we show up around meal time, they are glad to accommodate us.  They pretty much treat us as though we were very special customers at a restaurant!  This is probably rare--some homes might need you to call ahead or even set a date a few days in advance.  Sharing an occasional meal together can be a wonderful way to help your loved one feel at home in a new setting.

2.  If we need a box of Kleenex, a hand towel, or other supplies during a visit to our loved one, do you want us to help ourselves from the supply closet or shall we ask an attendant to get what we need? I unwittingly offended the charge nurse when I opened the supply closet door to get a hand towel for my mother's bathroom.

3.  Clarify the kinds of caregiving checks you will perform for your loved one when you are onsite. Just be very matter of fact as in, "I will continue to check my mother periodically for pressure sores and to be sure she is changed and clean--may I have your assurance that no one will attempt to prevent me from doing this?"  If this causes defensiveness I would call this a red flag; find another facility.  When I encountered defensiveness or irritation, I was polite. I told them that as my mother's patient advocate that I not only had the right to check her for cleanliness and freedom from rashes, but that it was my responsibility to do so.  And so it was.  While they were learning my mother's needs she suffered redness and inflammation, overflowing adult diapers, and a suspected urinary tract infection.  It took a few months to remedy these caregiving challenges.  I wasn't critical, but when I found a problem as I often did during the early months of time, I drew it to their attention.  This provided accountability for them and was a safety net for my mother.  You mustn't back down too easily when your loved one's welfare is at stake.

4.  What is the procedure to report a caregiving can we communicate efficiently when a change needs to happen?  I should've asked this question even before Mom was placed, but did not. About four months into her care I learned there was an official needs form that could be filled out and handed to the head of nursing.  I've used the form just once, but it was an effective method to communicate a problem quickly to all staff.  I wish I'd known about this sooner.

I don't know that a period of "overwhelm" can be avoided when a loved one is placed into nursing home care, but asking the right questions can help to prevent that clueless sensation I endured!