Friday, April 17, 2015

Amazing

If, when this journey through my Mom's Alzheimer's is done, I ever begin to think I made it through via good planning, hard work, and my exceptional caregiving skills--someone needs to just knock me upside the head to gently set me straight. 

In truth, I have bumbled through by praying day by day and sometimes moment by moment, and the Lord has just been very gracious to my mother and me.  I'm too bleary eyed right now to remember and record a complete list of the ways our challenges have been met over the years, but the most recent bears sharing.

A week ago I was stricken quite suddenly with a painful case of strep throat followed by debilitating flu-like symptoms. I was unable to enter Mom's apartment, and felt frantic. Our backup caregiver could not be exposed to my flu because her husband has COPD, and my daughter is newly pregnant and has two small children.  Since Mom's recent UTI she had required high maintenance caregiving of the sort my husband was unable to provide; she had become completely incontinent and worse, had lost motivation to make those important trips to the bathroom to change her clothes after an accident.  She would not get out of her bed or her chair without physical help.

The only solution I could come up with was that we might call 911 and send Mom to the hospital, then once the necessary recommendations were in order to satisfy Medicare, to place her at the nursing home we'd toured last month.  I made a list that outlined exactly what needed to be done for Mom and handed it to my poor husband.  He entered her apartment with fear and trembling, only to find she had gotten up for the day without being helped, and had toileted herself, bathed, and dressed. "Where's my toast and coffee?" she inquired perkily.

Overnight she had gone from  having to have physical help to stand and navigate to the bathroom, and returned to independent behaviors we'd not seen for two months.  She had changed her adult diapers by herself 4 times in the night. And she had dressed without being asked to do so, a behavior we haven't seen for over two years. 

While I was too sick to enter her room, Mom's bed was dry each morning and she continued to take daily sponge baths and to toilet herself independently.  A week later, she continues more independent behaviors than before I fell ill, though not quite to the degree that she exhibited that first night.

I'm still recuperating and haven't assimilated all that's happened, but I do know beyond doubt that the Lord has met our needs. The word "miracle" keeps tickling my befuddled brain and I'm not so sure it isn't accurate. 

One thing is certain, the relatively carefree way we have sailed through this most recent challenge has nothing at all to do with me.  I guess I need some sort of a contingency plan, but where does one find a backup caregiver who is trained to do the really heavy duty stuff and is also willing to be exposed to strep throat? 

Better just to keep trusting the Lord.  He hasn't let us down yet.

Wednesday, April 1, 2015

Musings on the Merits of a Yogurt Parfait

My Alzheimer's mom has suffered what is likely a urinary tract infection (UTI), and I've learned about the atypical symptoms that occur in elderly patients who have this condition. Withdrawal, lethargy, and a downward cognitive slide were almost certainly due to this infection, so, heads up to caregivers who haven't yet experienced this: sometimes atypical symptoms are the only ones exhibited by the elderly (which may throw you completely off when you are trying to figure out what in Heaven's name is wrong--they certainly did me!).  Recommended: an informative article about UTI's HERE. 

The Lord helped me out with this one because Mom came down with a cold at about the same time she exhibited the UTI symptoms. I didn't recognize the UTI but I did know that she is a pneumonia risk whenever she suffers a cold, and so we put her on antibiotics. And that cleared up her infection. 

And we all lived happily ever after?  Not so much.

The antibiotic gave my newly incontinent mother diarrhea. Those of you in the trenches of heavy duty caregiving with me understand the devastation I felt over what happened next.  End result: laundry was quadrupled, and caregiving became intensive.

Enter the yogurt parfait.


Yes, I know, this seems an abrupt change of subject (and, in this context, not a particularly appetizing one), but stick with me here.

I reached out for help to our area department on aging and asked for products and procedures to help with incontinence. After some stammering, an intern came up with this information: "There is a good medical supply store 90 miles from your location, would you like directions?"

Not helpful.

I called our nurse practitioner.  "Give her yogurt daily, and if that doesn't help call me back."

This, it turns out, was moderately helpful. Probiotics can help after a round of antibiotics, and yogurt contains probiotics.

I did a Google search for foods that will encourage a firm stool. (Love how Google search histories reveal what is going on in one's life.  When nothing much is going on with me my history has queries such as this: "How tall is the actor who plays Thor?"  Lately, they've read more like this one: "How to get an elderly parent to appreciate me").

Anyway.  Turns out soluble fiber can act like a sponge and help the problem I was desperate to correct for Mom.  And, oatmeal is a good source of soluble fiber.

And, people, I have to tell you that IT WORKED!  A daily yogurt parfait for 3 days and Mom is not only back to normal, she is BETTER than normal. ( Those of you who are in the trenches of intensive caregiving with me will understand what I mean).

Here's the recipe that is helping us--and as always a disclaimer--clear any dietary or medical advice you read here with your loved one's medical professional. What works for one person may not work for another.  This recipe is, for example, too high carb for someone who has diabetes.  Anyhow, here ya' go:

3/4 cup quick oats
2 teaspoons brown sugar
2 teaspoons. lite margarine, melted
3/4 cup fat free vanilla yogurt

Place oats in a cereal bowl, drizzle margarine over, press brown sugar into oat mixture until well mixed.  Add a little more sugar or margarine if you think it needs it. Layer yogurt and oats in a clear glass or cup.  

The oats aren't cooked and I think this makes them more effective as a soluble fiber source.  

Hope this post helps someone today, and to those who plow through these posts not because they need caregiving tips but just because they are kind and supportive people--please keep praying for us.  Love and gratitude to you and to our Lord. 


Sunday, March 29, 2015

As He Has Done for Us

When Alzheimer's patients lose ground--as they will, there's no preventing it--the caregiver/patient relationship has to be renegotiated. For a stick-in-the-mud like me who really hates changes in any status quo, this is difficult.

The added layer of angst for a family caregiver comes from a sense of betrayal and loss because the loved one is drawing yet further away.  Oh how we cling to the last vestiges of the mom/dad/spouse/sibling we once knew.

Our new challenge is incontinence. I had naively thought I would not have to deal with this issue. I have always said, "Once Mom is no longer able to navigate her way to the bathroom by herself, she will need nursing home care." In my mind this would be a time when she was unable to stand and walk independently. The choice would be clear-cut. Of course more seasoned caregivers are shaking their heads at me right now; dementia patients often forget proper toileting procedures before they forget how to walk.  But I had nevertheless clung to a bit of wisdom offered me by our elder care attorney early on in this journey: "It is transfer issues that put people in nursing homes; inability to transfer from bed to wheelchair, and from wheelchair to toilet, etc." The interpretation I placed upon these words was faulty; I did not envision a time when Mom would be physically able to walk but would lack motivation or a strategy to do so.  She waits for "guidance" as she calls the directions I give, and she reserves the right to resent that guidance.

I've adapted to the increased caregiving load. After these years that really wasn't terribly difficult. But Mom's anger and resentment has made our cleanup sessions nearly unbearable for me. She has kept up a constant flow of hurtful words about my motives and lack of competence; and with amazing virtuosity for someone whose thinking skills are so compromised finds her target in my heart.  I have felt devastated by her words, which have felt nothing short of abusive.

Today I took this matter to the Lord in prayer and these thoughts came:

-->
Your mother is defending herself because your responses to her accidents are perceived as accusations.  She feels criticized and responds with acerbic anger. You can defuse her anger with a low key response and a matter-of-fact attitude.  Understand that, at times, her inner voice of self-condemnation becomes tangled in her mind with your responses so that she believes the condemnation is coming from you when it is not. Pray for her as you work, and this will set up a shield from the accusations in her head, and will provide shielding for you as well. The enemy’s barbs are defused of power to devastate when you are praying for your adversary, even when that adversary is a loved one. 

Sure enough, when I charted my initial responses to finding her seated in her own waste with no sign of discomfort or remorse, I realized I'd responded with shock and amazement rather than calm acceptance. And, I felt it necessary to explain to her what she had done (because she evidently didn't know), and so made her feel accused. 

There was a deep sense of injustice, at first, that after all I've done for Mom that now I should be expected to do this.  Yes, I felt God should not ask this of me.  But this week the Sunday School material I prepared for the 1st through 3rd grade class at our church outlined the story of Jesus washing His disciples' feet. The Holy Son of our God, our King, kneeling, washing smelly, dirty feet...  I have set you an example that you should do as I have done for you (John 13:15). 

Jesus didn't give up on us when He found us soiled with the stain of our sin, He cleaned us up and has presented us to the Father as children of God, fit to enter the Kingdom. He did this for us.  And sometimes He teaches us--in ways more graphic than we would have liked--how to love one another as He has loved us.  The good news is that when He puts us in these situations He also provides amazing help; all that's really required of us is our willingness to go where He sends us and to do what He asks.  He provides everything else.  I've felt the comfort of His presence and provision of the smallest things I need as I go about this work He's provided me to do.

He'll do the same for you. 
********
Note:  I have been prepared for these recent challenges over eleven years of caregiving for my mom. Twenty years ago when my father underwent similar difficulties during the months he was dying of lung cancer, I couldn't face those challenges; I was unable to help him in this way. Don't condemn yourself if you have been unable to minister to a loved one as I've described here. There's no shame in not being able to do a back flip if you aren't a gymnast! God prepares us for the challenges He provides.

Saturday, March 21, 2015

Comfort for a Sad Day

Perseveration is sometimes a behavioral manifestation of those who have suffered brain damage. The term means simply that the patient repeats a certain action or behavior over and over and over again.
This morning I picked up my mother's journal to find three pages of entries like the ones above, an example of perseveration; here is visible evidence that her poor mind has been compromised by the hateful effects of Alzheimer's. For some reason this outward symptom of her dementia upset me terribly. The proverbial straw, I guess. 

I cried out to the Lord, weeping:
Lord, You know what portion of my tears are selfish; what will I do without my mother?  
You know what portion of my tears consist of terrible empathy for my sweet mom who is lost in a confusion she did not choose and cannot help, a victim of the brain damage caused by Alzheimer plaques and tangles. I dread the increased suffering she may have to endure.

And You know what portion of my tears come from worry that the same thing might happen to me.  
I had lapsed to fear not only of Mom's death, but of the struggle we may have to undergo on her way to that final passage. So I turned to the road map the Lord was gracious to provide us near the beginning of my mother's battle with Alzheimer's.  Over a series of months I recorded His guidance into a manuscript that became My Mom Has Alzheimer's: Inspiration and Help for Caregivers (Bridge-Logos, 2009). Here are quotes from the book that have helped me today:
The Lord... is sovereign over death. His good and perfect will encompasses every life event, even those that cause us pain. He is able to work every circumstance into conformity with His will, for our good (p. 247).
 Jesus Christ has conquered death. His purpose in coming was to deliver me and to set me completely free. He is trustworthy and He is in control. I pray for grace and the will to look steadfastly at Him so that I will not be afraid (p. 250).
Our physical bodies are like the alabaster vase that held the nard Mary poured upon the feet of Jesus. The vase was broken to release the perfume. Each of us is headed toward an appointment with physical brokenness because no one escapes physical death. Sometimes the process of death is painful and for just a little while, we are preoccupied with the breaking of the container, but then the fragrance of Christ flows forth as the spirit is released (p. 255). 
And what wonderful comfort from Scripture: 
“I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them” (Isaiah 42:16 NIV).

“And you saw how the Lord your God cared for you all along the way as you traveled through the wilderness, just as a father cares for his child. Now he has brought you to this place” (Deuteronomy 1:31, NLT).

“He heals the brokenhearted and binds up their wounds” (Psalm 147:3 NIV).
I don't feel happy right now, but I am calm.  I don't like feeling sorrow, but I am assured of the Lord's comfort. I'm tired but I am confident the Lord will provide me strength. 

As I write these words, Mom is comfortably tucked into bed, sleeping soundly. She is doing ok right now, and because of God's grace and guidance, so am I. 

Saturday, March 14, 2015

Helpful Products for a Hard Time

Nearly eleven years of caregiving have taught me that transition times--when the patient is undergoing a downward turn--can create tension and trigger grief over what has been lost. I'm struggling through a sad transition time with my mom--please pray for us!

I really am very tired today but am shaking it off right now so the remainder of this post should be more upbeat and downright helpful!

Below you will find a list of products that have helped us during the complete incontinence Mom suddenly began to suffer a week or so ago. I worried that she had suffered a small stroke, but our nurse practitioner treated her for a urinary tract infection. She has now actually regained a measure of bowel and bladder control since her difficulties of last week. Note to caregivers: in Alzheimer patients, urinary tract infections can cause seemingly unrelated symptoms such as hallucinations, apathy, withdrawal, and loss of will to make those all important trips to the bathroom.  For whatever reason, for two days Mom just withdrew into herself and sat immobile, unwilling to stand or walk, and although I knew UTI's can present with atypical symptoms in the elderly, I didn't recognize the signs. You'll find a helpful article about UTI's in the elderly here.

Here are those products that have helped us through this time: 




Tranquility overnight adult diapers are the best I've found so far to prevent most leakage. When I added a Poise pad to these the bed stayed dry throughout the night.



This priva sheet protector has saved me a world of grief. I use baby diaper pins to secure it on top of the sheet, so that in the mornings I simply unpin the protector and have only to launder it--an easy task as compared to having to change the bulky mattress pad and under sheet on a daily basis.


These baby diaper pins fasten securely and have not come undone. I put three on each side of the waterproof pad. I also use these to secure Mom's blanket to the opposite side of her bed so that she doesn't pull them off and become entangled when she tries to walk away. This had become a problem, and Mom claimed it was because she always rolls over the same way (this elicits a mind picture of her performing 360 degree rotations throughout the night). For whatever reason, before I began securing them with diaper pins, her blankets ended up on the floor by her walker by morning.

For now, Mom's problems with incontinence have decreased in severity and my caregiving load has lightened once more. But her bout with this UTI motivated me, finally, to tour a nearby nursing home and it was an overwhelmingly positive experience. Caring staff, a perky little dog who greeted us at the door, residents who looked clean and happy, a popcorn machine and movie room--I came away feeling as though a heavy burden had rolled off my shoulders. When my knees buckle and I can no longer take care of Mom here at home, it is wonderful to know there is a place where she can be happy and well-cared-for apart from me.

Meantime the Lord just keeps providing the help we need at our point of need.  Preparing to release my mother into the care of others is hard, but I know the Lord will see us through.



Tuesday, February 17, 2015

The Writing on the Wall

A box of colored pencils gave inspiration for my very first scribble, just inside the doorway of our room. 

This has been a busy season of our lives, with my dad's funeral, two weddings, two grandkids, one retirement, and one Alzheimer patient in the mix.  We built an addition onto our house for my mom when she was diagnosed with Alzheimer's eleven years ago, and life since then has rollercoastered along with little time for the home improvement projects I used to enjoy. Our bedroom hasn't received a fresh coat of paint in probably 20 years.  

Around the time of Mom's diagnosis, I began writing on the walls of our bedroom. Hey, everyone's entitled to a little bit of "crazy" when things get stressful, right?  My poor husband made no comment; he probably thought it safest to keep his own counsel.  And, home decor has never been of great concern to him; in the same way that he is able to ignore peeling paint or faded wallpaper, a few hieroglyphics on his bedroom wall did not cause him concern. 

It was freeing, in a way, because everyone knows you aren't supposed to scribble on the walls; it is a lesson learned before age five.  Perhaps it began as my protest against the tide of circumstances I could not control. But to be more charitable with myself, I'm a visual learner, and having inspirational words in line of sight helped me cling to God's promises during a time that almost everything else was unraveling. 


In the weeks before the wedding of my son--that promised boy, youngest child, now grown into a Godly young man--I recorded a Scripture a day in three neat columns on the wall facing the bed.  Steadied by these promises, room was made in my heart for a beautiful daughter-in-love, and my happiness was untainted by that painful-for-the-bearer and annoying-for-everyone-else mommy grief that sometimes robs joy.


As time went on, computer passwords, prayer lists, and quotable quotes vied for position with more lofty sentiments.  





One afternoon I sat on the floor between the dresser and the nightstand, and used my colored pencils to inscribe my life verse low on the wall where I would see it during afternoon rest times necessitated by the aching joints and exhaustion of an ailment that's never been diagnosed, but has caused me discomfort nonetheless.

I claimed God's promise of fruitfulness and have prayed to remain "evergreen" in old age, despite the aching and weariness He's allowed me to endure.  At some point I spilled a glass of water on the apple and the colors ran. 
 At this writing the ceiling's been redone, and I've spent the afternoon patching nail holes and putting a coat of primer over each of my scribbles.  Oddly, I don't feel much remorse over covering the  verses and sayings that sustained me during this demanding season of life.  Maybe that's because they are written on my mind and heart, but it is also because I am ready for a new song.  At last I am able to grieve the loss of the mom I once had without the kind of overwhelming grief that is so painful-for-the-bearer and annoying-for-everybody else. I'm able to grieve as those who have hope (1 Thessalonians 4:13). 

My newly painted bedroom will have just one saying on the wall, and that won't be in my own handwriting. I've bought a prepackaged "painted look" decal that says "Pray in everything, worry about nothing."  It's decorative and tasteful.  Not at all odd, like the scribbled walls I'm covering in a shade of subdued almost-blue.

But on second thought, I might break out my colored pencils one last time.  Back behind the nightstand on my side of the bed, where no one will notice but me, I could inscribe these words from George Herbert:

And now in age I bud again
After so many deaths, I live, and write
I once more smell the dew and rain,
And relish versing. Oh, my only light,
 It cannot be
That I am he
         On whom thy tempests fell all night.
(entire poem available here)...

Well, maybe not.  

We'll see!  

Tuesday, February 10, 2015

Nifty Product

I've found a little gadget that makes it less likely that my Alzheimer's Mom will go outside without my knowledge. It is a doorknob alarm that activates when Mom touches it, and stops as soon as she takes her hand away.  This might deter her from going out, and if she does decide to leave anyway, the alarm will let me know. 


Amazon has similar alarms, and they don't good reviews because they aren't supposed to be used on metal doors. I'm not sure why this is; perhaps contact with the metal of the door could conduct a static charge somewhat like a touch lamp, and activate the alarm? Our door is metal and we've had no trouble thus far, but the door is protected by a screen door on the outside. 

Thus far I've remembered to switch the alarm off before I feed the outdoor cats each morning.  I'll probably forget eventually but the alarm will quickly remind me.

I'm pleased with this simple and inexpensive alarm that adds another layer of protection for Mom.