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.

Monday, May 2, 2016

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

Tuesday, April 26, 2016

Loving Like He Did

I read this Andrew Murray quote the other day and it has troubled me since. I'd snapped a lovely phone photo of spring trees, and as I worked to create a word picture of Murray's quote superimposed upon that picture (see above), my sense of guilt increased.

I've read that we should treat one another as we would treat the Lord Himself, and I have failed.  "As ye have done to the least of these, my brethren, ye have done unto me..." is how I remembered the Scripture passage from Matthew 25:40.

To make matters more uncomfortable for me, I'd read a blogpost by a beautiful lady who spends most of her time with her Alzheimer's mom cuddling and telling her how much she is loved. But she also said that she is fortunate to have several paid caregivers for her mother. I, on the other hand, am my mother's all-in-all. I bathe her, shampoo, cut, and curl her hair, change her soiled adult diapers each morning, remind her to take bathroom breaks every two hours during the day, prepare and serve all her meals, do the daily cleaning chores in her apartment, etc. etc. We do have respite care once a week so I can buy groceries, and my husband and I usually go out to lunch together on that day.

All this isn't as bad as it sounds; my mother pays me a small salary, the work is fitted to my stamina level, and I've been spared the sorrow of putting Mom in a nursing home before she was ready for such a placement. However, I'm firmly cast in the role of "needs provider" in my mother's mind, and this is not conducive to her seeing me as a loved one. She resents me as a child might resent a strict teacher.  I rub her back with lotion, I see that she is bathed thoroughly, and I wash her feet, but the Lord sees the attitude of my heart. The actions may be loving but my heart does not feel kind, especially when Mom berates me as I carry out these ministrations.

I took my sense of failure to the Lord, and was blessed by His response.

First of all I felt the comfort of interpreting Matthew 25:40 a little differently than usual. Today it occurred to me that whatever I do for those in need, I do for the Lord rather than to the Lord.  Instead of thinking of Jesus as the poor victim of Alzheimer's, I was led to think of Him as standing beside me as I minister. Mom often lashes out at me, and my attempts to think of her as I would of Jesus  made me prone to receiving her condemnation as though I were receiving from the Lord Himself.

It helped me to think of Mom as being beloved of the Lord, and as though I'm caring for her on His behalf. It's as though He's standing next to me, giving instruction, nodding approval as I tend to her needs. And sometimes He gives me a hug of compassion when my heart gets hurt. On the occasions when she's crossed a line of verbal abuse to a degree I can't bear any longer, He's escorted me from the room, soothed my heart, and enabled me to go back and finish my assigned tasks.  

The difference in this visualization keeps me from feeling chastised by the Lord.  I had thought I was to imagine my ministry to Mom as being ministry to Jesus Himself. So if I lost my temper with her, or had to leave the room, I thought I was betraying the Lord.  Even for those who don't envision ministering to the Lord, ministering to a parent carries some of the same hazards. We aren't supposed to feel negatively toward our parents. But if we think of the Lord as being our helper rather than our chastiser, the burden lightens.

Here is what I'd say to someone facing similar caregiving emotions: 
The Lord is at your side. He is encouraging and helping you. When your heart is hurt, He feels compassion and love for you. He understands your sorrows, He supports you as you are being abused, and He is actively at work on your behalf. He sees that you have continued in ministry, even when it is difficult, for the sake of the love you know He holds for your care recipient. Minister, not so much on God's behalf, as in His strength. The Lord is with you. 

For those of you who have graciously supported Mom and me with your prayers, I'll share that I believe we are drawing near the time that I will place her in the care of others. Please pray for us that at the end of Mom's Alzheimer's journey we can have a season during which we effectively communicate the emotional and spiritual nurture of loving one another in the Lord, unclouded by those inevitable caregiving tussles. 

Saturday, April 9, 2016

Did you get Mom out of the drawer?

Baby monitors let us hear Mom call even if she is unable to reach her one-touch phone.
The title of this post probably has you a little concerned, but it isn't as bad as it sounds. Let me explain quickly, before you navigate away from this page in dismay.

My mom has her own living area attached to our house, a mother-in-law addition if you will. Mom's cat isn't allowed in our part of the house because of the grandkids' allergies, but when her door is closed I don't have confidence we could hear her if she called. And so we have a baby monitor in Mom's apartment with two parent units in our part of the house, one upstairs and one downstairs. But during the day, Mom's music selections emanating from the monitors bother me. She loves jazz, I do not, and I'm one of those people who have trouble concentrating if music is playing constantly (yes, doctors' offices drive me nuts...).

I have learned that if I will turn the upstairs unit to the lowest setting and slide it into the top drawer of a bureau in the hallway, I can still hear Mom's outside door alarm, her smoke alarm, and her voice if she calls loudly, but the music is blocked out. At night we always turn the monitor to it's loudest setting so we will be certain to awaken if there are unusual sounds from Mom's rooms. Thus, when my husband and I go to bed each night one of us usually says to the other, "Did you get Mom out of the drawer?"

This has made me think about how easy it is to be misunderstood when one is taking care of someone with dementia. Appointments with Mom's physician can turn into a comedy of errors as the doctor, following good patient protocol, addresses all questions to Mom rather than to me as her caregiver. With a short term memory of about 5 seconds but still very bright in the moment she is in, Mom utilizes her ample store of creative imagination as she replies. This has led to some interesting situations. The poor doctor often receives two very different accounts of the reason for our visit, and though inevitably inaccurate, Mom's version often sounds more credible. 

Mom is proud of her pretty apartment and has no idea she is not the one who works hard to keep it that way. If the windows are clean, she must have washed them; if the afghan on the couch is attractively displayed, she must have arranged it thus. She once told our pastor that she uses vinegar and water to wash the windows, which caused him justifiable concern because Mom is short and the windows are at a height that require a step stool. I could see by the concerned expression in his eyes that he believed I had allowed my 91-year-old mother (who uses a walker) to climb a ladder to do my household chores.

If any messes are apparent though, Mom is fully convinced I am to blame and doesn't hesitate to absolve herself of responsibility before guests. She knows she would never allow such a situation.

However, as the story at the opening of this post proves, my husband I are perfectly capable of fostering misunderstanding even without Mom's input. For example, in order to mute Mom's music in our downstairs area, the living room baby monitor is often pushed beneath a cushion on an overstuffed chair, a maneuver that allows louder noises to gain attention but mutes the offensive-to-me Jazz selections. This evening I was on my way into the kitchen to work and was afraid I might not hear the monitor. As I left the room I turned back toward my husband and said, "Would you get Mom out from beneath that chair cushion?"

Thank the good Lord no one else overheard that one. 

Saturday, April 2, 2016

Hug a Baby, Pat a Dog, Stew a Chicken....

Depression is a horrid side effect of taking care of someone who has dementia. I am worn down not only by my mother's illness, but also by wearisome physical problems of my own, and I have an embarrassed suspicion that some of those symptoms are magnified by depression and grief.  Why embarrassed? Because of long schooling that such suffering is not "real."

But it is.

Grief and depression can feel like a bad case of the stomach flu. Logic tells us it is temporary, but our suffering hearts and bodies don't really believe it.  I was weeping before the Lord this morning and was reminded--and want to remind my fellow caregivers--of His compassion. He knows our hearts. He loves us. He won't let go.

This morning I felt overwhelmed by upset over our messy yard, dandelions peeking through the grass, and a broken down chain link fence (courtesy of our great big yellow lab named "Moose").  Everything seemed horrid.  I can't even express the despair I felt over the hedges that will need to be trimmed and the stains on the side of the vinyl (vinyl-ugh!!)) siding.

I took a nap.

When I woke up I still felt despair. But I pulled out my phone and scrolled through the photos of our baby granddaughter. She visited for a few hours yesterday, and the photos show her full repertoire of expressions, which, for a four-month-old, are truly amazing. She is adorable whether pouty, flirty, mad, sad, or joyful. 

I then donned an eccentric looking sunhat (necessitated by my newly diagnosed Rosacea) and, averting my eyes from the mirror next to the door, went outside.  The dog-who-destroyed-our-fence came dancing up to me and bowed, hind end in the air, tail wagging. I relented and patted his head. He went into an ecstasy of blundering happiness and offered me his favorite bone (when I reached for it, he changed his mind, but still).

I wandered out to last year's flower garden. I couldn't pick up a hoe or get to my hands and knees because of a fibromyalgia/arthritis flare, but I found that the sage had overwintered and plucked a handful. And last year's rosemary is still fragrant; it was such a mild winter. I love the scent of rosemary.

I came back inside, cleaned the kitchen, and put a chicken on to stew. Onion, sage, celery, garlic, and rosemary--oh my goodness; aromatherapy!  I went back outside, shooed the dog away and sat on the porch.  It is absolutely amazing how much better things looked.  The lawn was still unmown, the fence looked terrible still, but I felt better. And I like my little yellow house, vinyl siding included. 

On some days the heaviness of sorrow nearly paralyzes me, but if I can just open my Bible, pray, and maybe go ahead and cry, I'm released to move forward.

God is good.  We are blessed. The Lord is with us in the sorrow and He will bring us through.

Strength for today, and bright hope for tomorrow, 
Great is thy faithfulness, Lord unto me.  
--from the Hymn Great is Thy Faithfulness