Saturday, June 25, 2016

Caregivers Make Bad Patients

When I am sick, really sick, I go into a strange mental state.  It's as though physical suffering precludes clear thinking, and I stop making sound judgments either about things I might do to help myself (go to the doctor, rest) or what others might do to help me.  It is only when an ordeal of illness is in the past that I realize what I ought to have done. And I'm afraid that at that point, I also become aware of what others ought to have done, and in a a post-illness state of vexation I let them know about it!

This time it was a horrid cold that turned into a throat infection and chronic coughing that just devastated my whole system.  "Don't do your outside chores Mom; you shouldn't get overheated," said my daughter.

"Oh but it is my joy to water my outdoor plants, and it is the only exercise I get," I replied.

"You need to go to the doctor," said my husband.

"Oh, let's give it another day, I don't feel too badly."

They both gave way to me because I'm the caregiver. I'm the one who analyzes my loved ones' needs and writes prescriptions, so to speak. If my daughter is sick she goes to the doctor if I think she needs to do so. When my mother has a toothache or needs a flu shot, I'm the one who makes the appointments. And my husband now receives yearly physicals as a result of my nagging encouragement. My loved ones are used to giving way to me because they know I care, that I have a wider medical knowledge base than they, and...I'm kind of pushy.  But it's all from love!  And it is my role in life. I am a caregiver and a nurturer.

And I am a bad patient.

I don't feel comfortable if others "do" for me, I'm only happy if I am doing for others. Thus I do not possess a grace my mother has developed over her years of being an Alzheimer patient; she knows how to be a care recipient. By contrast, I do not know how to ask others to do things for me, I don't take directions well, and I push others away when I'm sick rather than making it clear what I need.  When it is all over, I realize how sick I've been and how it would've been nice to have had a caregiver, and I have an unfortunate tendency to use the clear vision of hindsight to tell my loved ones how they should have helped me (even if they were rebuffed)!

I hope to do better. Caregiver syndrome at it's worse creates people who will not take vacations because no one can do without them, can't receive ministry from others because it just doesn't feel right not to be "doing" for them rather than the other way around, and then, when burdens become too heavy, are prone to resentment.  I think...I know, I'm suffering from caregiver syndrome.

I'm too tired this evening to think through some strategies for change, but I do know change is needed.  I've read that those who will not take time to vacation eventually will have to take time to be ill.  I need to heed that wisdom.

Meantime, I'll work on being better about considering suggestions from my husband and daughter when I'm sick.  I would have gotten better quicker this time around if I had followed their directions. 

Saturday, June 18, 2016

Happy Place

 As caring for Mom has kept me closer to home, I've felt grateful to have discovered joy in growing a few flowers and creating fairy gardens around my yard. It has been so much fun to create these little worlds, and not very time consuming since I--unlike the virtuosos who post their creations on Pinterest--do not build my own scenery.  But I've had a lot of fun, and when my grandkids visit they love running to find each new addition.  I highly recommend a hobby--be it knitting, quilting, crafting, etc.--for all weary caregivers.  We need that happy place!

Yes, I drilled holes in the bottom of my bird bath to create this little world.  Zoom in to see hedgehogs, mushrooms, and a boat with a leaf sail that is anchored at the little wooden dock.  

Welcome to the Dew Drop Inn.  I'm particularly fond of the little blue sign that says, "This is where the magic begins!"

The Disney scene (upper right) was my first fairy garden. Encouraged by my grandsons' enthusiastic reactions, I've continued to add to the menagerie.  

Friday, June 10, 2016

Migraine, Bad Behavior, and Alzheimer Insights

I was walking home following an after dinner, mile-long stroll. The weather was hot and humid, and about a quarter mile from home I began to experience a migraine aura. My migraines are not incapacitating;  I don't suffer throbbing, intense pain.  But my perceptions go off-kilter, I sometimes feel nausea, and, about 30 minutes after the aura first appears, my head aches. The ideal response is to take ibuprofen immediately and then relax in a darkened room as the first symptoms appear, but this time I needed to walk a distance in heat and bright light that, in my migraine-induced perception, stretched interminably ahead. By the time I reached home I felt very sick indeed.

As I was in the grip of more severe than usual migraine symptoms, I lost all semblance of a Christian determination to walk in the love that covers a multitude of sins. It also became evident that I'd definitely been keeping a record of wrongs (and you'll remember, 1 Corinthians 13 says love does not do this). The least grievance I suffered from others unleashed a torrent of tearful, outraged words. 

It isn't that my loved ones were completely innocent of any missteps.  But, in pain and feeling vulnerable, I lost the ability to be wronged in a way that honors the Lord.

I was trying to explain to a friend what had happened to me, and heard myself say, "It was a little like having Alzheimer's."

Bingo!  My mother's bad behavior, explained.

My incredulity over Mom's anger toward me doesn't come from a conviction of my own virtue.  I know I often emit an aura of pained longsuffering rather than loving empathy, and wouldn't that be difficult to bear?  It's just that Mom gets so spitefully, vindictively angry about any wrong I commit, large or small.  This is so inconsistent with the love she used to have for me that I can't understand it. 

She acts very much like I acted toward my loved ones today.

The latest research says that migraines actually cause changes in the brain.  During a migraine one's perceptions are canted, and a term has been coined, "Migraine Brain." Things that go wrong in the brain can cause us to respond inaccurately, inappropriately, and yes, sinfully toward others.

It's hard to be the one who has to depend on the abilities of others to love and forgive.  Today I was that person, the one who flung hurtful words that found their marks in the precious hearts of those within range of my vindictive anger and spiteful words.  It's unnerving that a physical ill can cause my commitment to loving as I've been loved and forgiving as I've been forgiven to go out the window, but it has given me insight into my mother's behaviors.

Lord, forgive me, and help others forgive me. I forgive my mother.  Thank You for Your covering mercy and grace even when we sin, and thank You for healing the wounds we receive and inflict.

As I was recovering this afternoon, I came upon a painting of Christ sitting next to a girl who has her hands clutched in front of her and her head bowed. He has a compassionate look on His face, and His hand is stretched out toward her. This ministered to my heart; the Lord knows, He understands, He has compassion even when our wretched behavior has alienated those from whom we long for acceptance and nurture. He does not turn His back on us. He hasn't turned away from my mother.  And He won't turn away from you or me.


The painting that touched my heart was called The Master's Touch, by Greg Olsen.  You can see it here.  If you visit this page, be sure to read the poem Olsen wrote to go with this painting. It makes an analogy between a student who would like to drop out when responsibilities overwhelm and how all of us would like to drop out of life when our burdens become heavy. It offers sweet solace for weary caregivers who would definitely like to drop out!

Tuesday, June 7, 2016

Praise Him in the Hallway

I had finished emptying the trash cans in Mom's room, and changed her bed.  Mom was dressed and needed only to stand and use her walker to come to the living room. As I waited for her to advance to my side so that I could help her into her chair, I had time to check my phone; Mama doesn't move very fast these days.

I saw that a friend had shared a meme on Facebook with this caption: Until God opens the next door, praise Him in the hallway!  

Coincidentally, Mom's c.d. player was playing This is my story, this is my song, praising my Savior, all the day long!  

I may be a little slow on the uptake, but the Lord had gotten through to me; I'm supposed to praise Him, period.  Not just when I am happy with my life, but always.  Or, as Scripture says, "Give thanks in all circumstances" (1 Thessalonians 5:18.)

Caregiving can represent an in-between time of life; many of us have grown children, grandchildren may have arrived, but we are still providing care to aging parents. Additionally, some of us are beginning to deal with age-related health issues of our own. Thus, sandwich generation issues represent a uniquely stressful time of life, as our beloved burdens consume our rapidly diminishing supplies of energy. It is too easy to lapse to an "I'd like to buy an R.V. and escape from all this" mentality.

But truth be told, happiness isn't acquired by freedom from stress.  The very people who increase our workloads are most often the folks we love the most. One doesn't generally receive hugs and "I love you's" from fellow campers in an R.V. parking lot. Most times it is those precious people God has entrusted to our care who are our our best hope of loving and being loved as He asks us to do.

So there's my first praise the Lord of the day; Father, thank You for this time of my life, thank You for the privilege of taking care of my mom in ways that are a little bit like how You have cared for me.  I praise you during this "hallway" time of my life. 

(And if there is an R.V. waiting on the other side of the next door the Lord opens for us, I'll praise Him for that too!)

Sunday, May 29, 2016

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

Wednesday, May 25, 2016

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.

Wednesday, May 18, 2016

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.