Tuesday, September 30, 2014

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, knew that she did not, and just stood by, offered tissues, prayed, and considered whether I needed to call 911 because 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! 

Monday, September 22, 2014

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

Wednesday, September 17, 2014

How to Grieve Like a Christian

There are some griefs so overwhelming and all-encompassing that we are stunned by loss. During those times the Lord sustains us; when we are blind and deaf from pain, He holds on. I don't think this post addresses grief of that caliber.

However, when land that had been in our family for 150 years sold recently, I grieved as though I was a child who had lost her home. As I sought the Lord regarding the soul-wrenching depth of this sorrow, the following guidance emerged: 

Remember that although you are cemented to a specific point in time, God is above time and space.  He is sovereign over your past, present, and future, and nothing is beyond His reach: "He is before all things, and in him all things hold together" (Colossians 1:17). 

Love does not die. A person, beloved place, or precious pet may no longer be with you, but to replace the reality of love with a shrine to grief is to replace what is real and will last forever  (love) with something that is transient (grief of loss).  "Love never ends" (1 Corinthians 13:8 ESV). "Gladness and joy will overtake them, and sorrow and sighing will flee away" (Isaiah 51:11). 

If loss of something of this Earth causes you to feel as though your moorings have been cut, use this opportunity to attach yourself more deeply to the Lord, because He will not abandon you. "God has said, 'Never will I leave you; never will I forsake you'" (Hebrews 13:5).  "I will not leave you as orphans; I will come to you" (John 14:18). 

Abstain from the forms of pain relief utilized by those who don't know the Lord. Discipline of the flesh allows the mind understanding of what the heart already knows: all is well. "Since we live by the Spirit, let us keep in step with the Spirit" (Galatians 5:25).  

Don't substitute another person or place for heart needs that can only be filled by a relationship with God.  "All my fresh springs shall be in Thee"  (Psalm 87:7 P.B.V.)

Refuse to exchange the reality of past blessing for the grief of the present moment. Grief is a temporary passage, not a permanent condition. "...do not grieve like the rest of mankind, who have no hope" (1 Thessalonians 4:13).

Make your heart's home in Christ, and through Him participate in the reality that encompasses all time and eternity. Past, present, and future, you are safe in Him.  “I am the Alpha and the Omega,” says the Lord God, “who is, and who was, and who is to come, the Almighty” --Revelation 1:8

Tuesday, September 16, 2014

Precious Memories Are Present Reality in the Lord

My mother's parents owned a farm in the Ozark hills of Missouri. Mom grew up there, in a little house that began as a one room log cabin when her grandparents homesteaded the place in the mid 1800's. My grandma always said her little house "grew like Topsy" over the years, with rooms added as the family increased in number. Grandpa added a porch and enclosed it, then built a second story, a kitchen, a bedroom, a utility room, and finally in the late 1950's the crowning glory: a fully plumbed bathroom.

When Grandpa was diagnosed with cancer at age 90, Grandma could no longer take care of him, and it was time for them to move to town. Grandpa lived only a few months after that move, and my mother signed over her share of the farm to my uncle, since he had agreed to bear the burden of caregiving for Grandma.  This followed a family tradition; a generation earlier my grandparents had inherited the farm in exchange for providing care for my great grandmother.

The little house that "grew like Topsy." The green portion on the left in this photo was a originally a separate "granny house," the precursor of what we now would call "a mother-in-law" addition. The room that connects it to the main house was added later, after my great grandmother passed away. She was bedridden for three years and my grandparents provided 100% of her care with no respite caregivers or social services to ease the burden.
The little house sat on a hill surrounded by lush pastures and tree-covered bluffs that offered a thrilling, 360 degree panorama of soul-nurturing beauty. My cousins and I grew up picking plums and apples from Grandma's trees and exploring the secrets of Grandpa's shop where a forge and anvil bore testament to his years as a blacksmith before he became a mechanic who worked on Model T engines. Our parents called this farm "down home," and it remained my heart home even when my grandparents were gone. My uncle and aunt razed the old house and built their new home on the site, and although I didn't visit often, I had the security of knowing that the property was still in the family. I could still go "down home" if I chose.
Tree-covered bluff and pond to the east of the house.
Pasture southwest of the house site.

My uncle was diagnosed with Alzheimer's last year, and a few days ago the sale of this property that had been in our family for 150 years was finalized.  This past Saturday I made one last journey "down home."

I was surprised at the intensity of my grief.  I felt embarrassed by my sorrow, as though it was somehow inappropriate. I knew that I should not grieve in the same way as those who have no hope in Christ (1 Thesalonians 4:13), but that Scripture passage refers to the loss of loved ones, not of a place.  How could an earthly location hold so much of my heart?  How could I, thirty years after any right of heredity had been signed away and over twenty years removed from the time Grandma's house was torn down, still manage to think of this earthly location as home, or believe it somehow provided me security? But I wept like a child over the final, irrevocable loss of this childhood place of happy safety, and a nightmarish sense of loss and homesickness settled over me.

In prayer, these thoughts came:

God is Spirit, and all times are "now" to Him. What was once real is still real in Him; all times belong to the Lord. I must not make an idol of this grief, take ownership of it, or label it as my own. To do so is to replace the reality of what exists in the past and replace it with a stone marked “my grief,” like Indiana Jones attempting to replace treasure with a worthless sack of equal weight.  His attempt did not work and neither would mine!  I can keep the precious memories--they are legitimately mine--but I can be rid of the grief.  My instinct is to hold onto the grief because it is in my present, and my access to the Missouri farm is in the past, out of my reach, but such an exchange replaces reality with sorrow.  Here is reality: I had grandparents who loved and provided for me, and I had beauty of the Missouri hills as my own. They will always belong to me because they once belonged to me.  No one can take them from me because there is no future or past in God; all is now! This goes beyond the platitude to "be comforted by your memories." It is more accurate to say, "Be comforted by your reality!" When I abide in the Lord, the glorious "now" of what was and is and is to be is mine.  All reality is "now" in Him. 

When we make our heart's home in Christ, we participate in the reality that encompasses all time and eternity. He keeps us grounded in Himself and does not allow us to find safe harbor elsewhere.  In God we are safe, and in Him all that was still is, and all that is will always be.   

“I am the Alpha and the Omega,” says the Lord God, “who is, and who was, and who is to come, the Almighty” --Revelation 1:8

Saturday, August 30, 2014

Take Heart!

Mom attacked me with a fountain of vindictively threatening words yesterday. 

I believe that if I hadn't been in prayer about how to respond she might have attacked physically.

I could not (and can't yet) chart the source of Mom's upset. I'd been patient and kind earlier in the day when she didn't want to bathe. I'd delivered cookies and coffee a short time before her outburst.  Pleasant words had been exchanged.  She had seemed content.

Reasoning with her and praying aloud for her did nothing. "I've thrown up a wall you can't get through. There's not one thing you can do about this," she said. 

A challenge that has been a blessing in disguise during our years as caregiver and patient is that Mom, probably because of the discomfort of an arthritic knee, does not like to make the effort to  stand.  Home care has been possible for her in part because of her disinclination to wander. As she used words to describe how she would spend the rest of her own life and hopefully mine torturing me, lying about me, and doing anything she could think of to make me miserable, she was safe in her chair and did not seem inclined to attempt to rise. I followed what I felt was God's guidance to quietly leave the room.

I texted two prayer partners to intercede for her and I called my daughter, who said she would bring  her children to visit Mom.  In the fifteen minute interval before my daughter arrived, I sat just outside Mom's room and prayed hard.  When my daughter arrived she found Mom reading her Bible.

"Well hello Sweety, how are you?" Mom said.

The difference between the vindictive anger of just a few minutes earlier and this calm greeting was incredible.  

Amazed by the difference in Mom in response to my prayers and those of my friends, I initially planned to write this post about the importance of steadfast prayer for care recipients (and this IS important). Satan has no respect for the weak and vulnerable, the opposite is true, and I felt if I'd only prayed adequately for Mom that the devil couldn't have had his way with her.  But as I prayed over today's events, I realized no caregiving error had been made, no gap left unprotected in our wall.  I was reminded that Jesus said, "In this world you will have trouble..."  In caregiving or any other mission field we can expect difficulty.  We may also expect that God will deliver us from it.

And so the certainty of God's deliverance is the point of this post. Attacks will come even when we are doing everything right (sometimes especially if we are doing everything right). These hurts will often come through loved ones, and we shouldn't be surprised by this.  We don't need to waste time with resentment or retributions.  When the devil attacks it is most expedient to pray and ask others to pray. 

The calm I felt as my formerly supportive and loving Mom attacked wasn't of myself.  It was as though the Lord placed a buffer between my heart and Mom's words.  I was aware of His presence with me, and I didn't feel anger, resentment, or even an aversion to Mom.  It was God's grace that enabled me to pray for her with love, and no blows landed on my heart.

My mother has Alzheimer's disease and thus has suffered brain damage. This is the physical basis for her behavior, and she will be headed to the doctor after this holiday weekend so we can be certain no other discomfort is bothering her.  Meantime I'll monitor her closely for any unusual physical symptoms. From her subsequent behaviors, though, I really think today's upset occurred in her spirit and emotions.  She ate a good supper, was not restless, made no complaint over her evening walk, and has slept soundly through this night.

We don't have God's promise that our caregiving journeys will be carefree.  What we do have is His promise of deliverance from trouble and His abiding, unfailing presence with us. 

I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.--John 16:33

Friday, August 22, 2014

The Present

This morning I read a selection from Biblegateway's series entitled C.S. Lewis Daily.  In his novel, The Screwtape Letters, Lewis reveals truth regarding eternity and time through a senior devil's counsel to a subordinate.  Screwtape says it is important to tempt human beings to think much upon the future in order to distract us from the present moment, because the present is the closest thing we have to eternity.  It is in the present that the Lord provides us sustenance and strength; it is with God's present help that we are able to experience freedom from regret over the past or fear of the future. You can read Lewis's words HERE.

Later in the day I thought about my mother's delight in being served a chocolate sundae.  "I haven't had a sundae in a long time, this is wonderful!" she exclaimed. In truth, I had given her an identical confection the night before.  Mama (like me) does not tire of ice cream, but unlike me her joy over the treat was undiminished by the memory of already having experienced it just a few hours previously. 

There is something very sweet about a dementia patient's ability to function well even though robbed of the past and unconcerned about the future.  My mom lives in the present, and according to C.S. Lewis, the present is the nearest thing we have to eternity while we are in our human forms.  God is with my mom in her present moment and she is, for the most part, happy living there.

Especially when there is ice cream! 

Friday, August 15, 2014

Caregivers Can't Be Perfect

Today I was short-tempered with Mom.

I have excuses.  She isn't nice to me sometimes.  She feels rebellious in much the same way a teenager resents a parent who is strict.  For example, Mom doesn't remember why I insist she gets dressed by lunchtime. She feels she should be left alone and treated like an adult, and if she wants to have a "pajama day," she should be allowed to do so. Trouble is she would like every day to be a pajama day, and when she doesn't dress she doesn't bathe.  That daily sponge bath is a necessity.

So I insist.  And she resents.  And after awhile she forgets why she resents me but she still feels the negative emotion, and unfortunately she does not forget I am the one to blame for it.

Today she wasn't mean, and she didn't make little deprecating remarks to me as she sometimes does, but one of her comments triggered my irritation. On the surface it doesn't sound like it should have upset me, but I was having a bad day from stresses unrelated to Mom, and when she said reproachfully, "It's too bad you can't spend some time with me," I felt angry. 

I said, "Spend some time with you? Spend some TIME with you? All I do is spend time with you and on your behalf!"  I then listed all I'd done for her so far that morning (including a time of focused conversation). 

She listened calmly and with no sign of remorse or empathy. When I finished she fixed me with a stern, maternal gaze and said, "I have a question. What do you do for entertainment when you aren't yelling at me?"

It's ok if you are giggling a bit now as you read this. I'm smiling--albeit ruefully--myself.

As a caregiver I expect more of myself.  I expect I should be always loving and patient. I should never lose my temper, or speak harshly to my mother (even though she is not at all helpless in such situations, as the exchange above shows).  This attitude that because I am the caregiver I ought to be perfect reminds me of some lines from the movie You've Got Mail. 
Meg Ryan's character apologizes: "I was upset and I was horrible."

Tom Hanks' character takes the blame: "I was horrible."

Meg replies: "True. But I have no excuse."

Tom says: "Whereas I am a horrible person and have no choice but to be horrible, is that what you're saying?"  
A little of that sort of arrogance is at work when I expect perfection of myself while granting my mom full indemnity because she has Alzheimer's. Truth of the matter is, neither of us is sin-free. Mom was not perfect prior to her Alzheimer's, and her disease is not to blame for every instance of bad behavior since her diagnosis (although I do my very best to empathize and allow her plenty of leeway because she suffers from dementia). 

And, anyone who's read my devotional for caregivers is already aware I am far from perfect myself (the Lord led me to be transparent regarding my shortcomings in order to offer comfort to other caregivers who share the same sort of struggles).

God is gracious to both Mom and me.  Both of us require His grace and forgiveness, Mom no less now that she is fighting a battle with a disease that has robbed her memory, and I more now than ever before.

We all stumble along the way. If a person never speaks hurtful words...then he has achieved perfection--James 3:2 The Voice (VOICE)