Songs by Night

This whole phenomenon of my Alzheimer's Mom wanting to cause me harm is difficult to understand, and more difficult to bear.  Mom's current episodes of vindictive anger are counterbalanced by periods of peace during which she prays aloud for God's help, reads her devotional, and thanks me for the care I've provided her. But the devastation Alzheimer's has caused in her brain is causing her times of discontent to increase.

The error a dementia patient makes is one to which we are all prone: "If I feel this way, someone caused it." Mom doesn't recognize that her increasing sense of isolation flows from inability to follow conversation or TV dialogue, along with failing hearing and vision. Childlike, she believes I know of her discomforts even when she hasn't told me of them. If she is too warm or too cold, she assumes I know and have purposely left her to suffer discomfort. These misperceptions test her Christian charity to the degree that she can't keep her temper with me. And so the actions and words I perceive as expressing vindictive dislike are actually Mom's responses to what she perceives as lack of care.

This is, as my grandma used to say, a fine kettle of fish.

Or, as Mom used to say, "We are between a rock and a hard place."

This is one of the most uncomfortable times of my life. I spent most of yesterday in agonized prayer and I want to share with you the resulting confidence I feel that the Lord is in control, He has our future--both Mom's and mine--in His hands, He hasn't forgotten me, and He has seen my labor and has compassion for my tears. Even as I cry out to Him for deliverance from this hard time, I also cry out for protection for my mother. I can't imagine how this can all work out but the Lord is in the future as well as in our past and present, and I trust Him when He says all will be well.

This snippet from a favorite poem by Freda Hanbury Allen says it well:

Trust were not trust if thou couldst see the ending of the way,

Nor could thou learn his songs by night, were life one radiant day.   

Our sense of well being or lack of it during every difficult time of life comes down to whether we trust God's goodness--or not. When my responses are governed by lack of trust I suffer insomnia and have to double up on the antacids.  What a blessed relief to remember that the Lord is sculpting the future so that by the time it reaches me, it will have assumed His perfect form. He will make us a way through this difficult time. 

I pray to honor Him with my responses now so that when this particular life battle is in our past, I won't have to feel embarrassed shame over how I panicked.  Lord I place my trust in thee!  

 ***

The Love of God 

by Freda Hanbury Allen

The love of God a perfect plan

Is planning now for thee,

It holds a "future and a hope,"

Which yet thou canst not see. 

Though for a season, in the dark,

He asks thy perfect trust,

E'en that thou in surrender 

"lay Thy treasure in the dust," 

Yet He is planning all the while,

Unerringly He guides

The life of him, who holds His will

More dear than all besides. 

Trust were not trust if thou couldst see

The ending of the way,

Nor couldst thou learn His songs by night,

Were life one radiant day. 

Amid the shadows here He works

The plan designed above,

"A future and a hope" for thee

In His exceeding love. 

"A future" -- abiding fruit,

With loving kindness crowned;

"A hope"-- which shall thine own transcend,

As Heaven the earth around. 

Though veiled as yet, one day thine eyes

Shall see His plan unfold,

And clouds that darkened once the path

hall shine with Heaven's gold. 

Enriched to all eternity

The steadfast soul shall stand,

That, "unoffended", trusted Him

Who all life's pathway planned. 

I have an heritage of bliss,

Which yet I may not see;

The Hand that bled to make it mine,

Is keeping it for me.

Here are Biblegateway links to the Scripture references Allen used in her poem:
Jeremiah 29:11
Job 22:24
Matthew 11:6

Look to the Lord for Comfort

Unless they are currently providing care to a loved one with dementia themselves, other people can't understand what you are enduring as a caregiver. I say "currently," because God's grace allows memories of past pain to soften and dissipate like fog in the sun.  I look forward to that time for myself! But while we are in the throes of the unique pain of the terrible love and terrible grief of caring for a loved one who is slowly fading from view, other people are likely to misunderstand, even those closest to us.

It's always important to recognize the good intentions of others and not to be exacting with our responses and judgments; after all, these are the precious ones who have been steadfast to walk with us through our trials, and how much worse it would be if they had abandoned us altogether? But we must remember that our Lord is the only One who is able to understand and comfort us as we make our way through a journey that has stretched interminably.

This morning I found rich comfort in comparing Psalm 138:8 in a variety of translations. Each version reminds us that we are not forgotten, that God is with us in the midst of the trial of caregiving, and that He will bring us through.

The Lord will fulfill his purpose for me;
    your steadfast love, O Lord, endures forever.
    Do not forsake the work of your hands. ESV

 The Lord will work out his plans for my life—
    for your faithful love, O Lord, endures forever.
    Don’t abandon me, for you made me. NLT

The Lord will vindicate me;
    your love, Lord, endures forever—
    do not abandon the works of your hands. NIV

 The Lord will perfect that which concerneth me: thy mercy, 

O Lord, endureth for ever: forsake not the works of thine own hands. KJV

Here is a prayer for those in the midst of a caregiving journey today: Lord, fulfill Your purposes for us, don't forsake us, help us to bear the stress of grief and sorrow, and deliver us from it, in Jesus' Name we pray.

Caregiving Helps

Why didn't I think of this sooner?

This evening I want to share a few products we use along with an idea that has simplified giving meds to my Alzheimer's mom. Following this information, I have provided links to other posts that may help caregivers who are struggling with practical, day-to-day caregiving issues. 

Sometimes the simplest things can save much trouble and discord. I've struggled with giving my mom her medicine for some time because she can no longer bend her head back far enough to toss the pills into her mouth from a paper medicine cup as in the past. Putting the meds into her hand doesn't work, because she has arthritis and inevitably drops one or more of the pills on the way to her mouth.  If I try to put the pills into her mouth we don't fare much better.  A few weeks ago it (finally) occurred to me to put the meds onto a spoon--and this works like a charm for us.

Having her hair washed is not Mom's favorite past-time, to put it mildly. We get by with once a week hair washing by using dry shampoo in between. I'm amazed how well this stuff works--it absorbs oil, fluffs Mom's hair, and smells fresh. And, Mom actually enjoys her nightly hair brushing.  You can find the dry shampoo we use here: Batiste Dry Shampoo

Finally, I've started splurging a bit on lotions, gentle hand soap, and body wash for Mom.  I order online from Bath and Bodyworks, and always use coupons from Retail-me-not. This has helped me to feel more positive about that daily sponge bath I must now administer to Mom. We have not yet used a no rinse bath soap, but if Mom's fear of water near her face increases we may have to try this.

I hope these things help others. The posts below contain additional information Mom and I have found helpful over our twelve years as caregiver and patient. 

A Practical Post - covers everything from medications to mealtimes to products for incontinence.

How We've Managed Thus Far - discusses the importance of a pet and plenty of exposure to daylight; repeats some of the info from A Practical Post.

Helpful Products for a Hard Time - incontinence products.

Caregiving Routines -- discusses the emotional/practical transitions that must occur for patient and caregiver as the patient loses ability to carry out activities of daily living without support.

Bath Day -- written back in 2007, still has some helpful guidelines for bathing a patient in the mid stages of Alzheimer's.

Nifty Gifts -- reviews one of my favorite products, the dementia digital clock. 

Scripture for Caregivers --  The most popular blog post I've written, with over 8000 hits, this post includes Biblegateway links to over 60 Scriptures that provide encouragement for caregivers.

Coping With Verbal Abuse

I'm embarrassed to write about this subject, but I think it is one that others suffering the same kind of trial might need to think about with me.

I'd not thought of myself as a victim until recently, when I staggered out of my Mom's apartment, fell into a chair, and said to my husband, "I feel like I've suffered abuse." He didn't laugh, as I thought he would.

He looked sad, nodded his head, and said, "Well, you have." 

My husband's affirmation of my sense of being mistreated somehow made it real for me. Mom is often verbally abusive, and the shift in my thinking of our relationship as one in which verbal abuse occurs has helped me to see the unwise, victim-like behaviors I exhibit that make her more likely to berate me.

An abuse victim will repeat the behavior that elicits an abusive response. The psychology behind this is that we hope this time the loved one will respond with acceptance that heals past hurts. Of course this doesn't happen.  Behaviors I find myself repeating to no avail are to plead with my mother to stop saying mean things, tell her she is hurting my feelings, or worse, pull a power play and forbid her to speak (which seldom works). The pleading elicits a mocking response from Mom that is hurtful, and ordering her to be quiet makes me feel wretched and affirms her low opinion of me.

Here are some things that I've recognized I need to change: 

1. Respond as a caregiver, not as a daughter.  Assume a professional demeanor, stay calm, and use a neutral voice tone.

2. Recognize that physical discomfort can cause aggression. An Alzheimer's patient can't process information normally, and may feel that the caregiver has caused the pain.  

3. Remember that dementia patients may be unable to explain exactly what is wrong or why they are upset. This may result in agitation that focuses on caregiver as a target. 

4. Don't underestimate the power of kind touch; a back rub or a pat on the arm might help when words won't work (but don't put yourself within reach of a patient who is volatile). 

5. Leave the area as soon as you can safely do so and try again later to complete the task that elicited the negative response. Pick your battles, for example, dry shampoo can be used every other shampoo or so if your care recipient objects to hair washing.  

It's difficult not to receive heart wounds from a patient who is able to draw upon long term memory to outline the caregiver's faults and failures with devastating accuracy. We must pray for wisdom about when to seek other care options for our loved ones.

Many Scriptures minister to the needs of those who suffer. This shows us that suffering isn't such an unusual thing, and reminds us that God provides for us through the discomforts we must bear.

~*~

So if you are suffering in a manner that pleases God, keep on doing what is right, and trust your lives to the God who created you, for he will never fail you.

1 Peter 4:19 NLT