Monday, May 25, 2015

Different Mind, Same Heart

Today I had the opportunity to visit with a lovely young woman named Anne, who is an elder companion. Elder companions may assist with basic daily tasks, provide respite for caregivers, and improve the quality of life for their charges by decreasing isolation through the formation of relationships that end up being a blessing to both the companion and the person who needs support.  

Anne told me that sometimes people who learn she works with dementia patients will make comments about the behavioral changes that are a part of the disease process. Some folks seem to feel that overtly negative behaviors reveal that a person has always been "like that," the only difference now being that dementia has robbed them of the ability to hide their true natures.

I was impressed with the answer Anne provides these people, which I've paraphrased here: "Isn't it nice that when people who now have dementia were younger, they had the ability to choose not to give voice to those negative emotions that we all have?  It's sad that now they've lost the ability to make that choice.  But that doesn't mean they were bad before or that they've changed now--they are the same on the inside although they may act differently on the outside."

I joked that the reason I thought these words were so wise is that I agreed with them so strongly! Negative behaviors need to be thought of as surface static--the result of cognitive changes and the physical discomforts of age and disease--and not as a reflection of the person's "true colors."  A simple way to think about this is the old illustration that the outside of a package doesn't necessarily reflect the quality of the gift within.  Bodies age and minds deteriorate, but beneath these outward signs every dementia patient is still in possession of a heart that needs comfort and support, a heart that is surprisingly capable of giving as well as receiving love.  It's our challenge as caregivers to maintain connections to the hearts of the precious people who need our care. 

You can read more about the unique and much-needed profession of elder companion here. 

Sunday, May 3, 2015

God's Help for the Valley

Sometimes a journey through a loved one's Alzheimer's disease feels like an extended walk through the Valley of the Shadow of Death.  The disease process can take years of time, and yet Alzheimer's is labeled a terminal condition with the result that the family of the patient not only has the initial shock of a terminal diagnosis, but then  must walk forward, negotiating a grief path that cycles again and again as we lose our loved one by stages.  It isn't just a marathon. A marathon, though long and grueling, has a clear cut beginning and end; Alzheimer's has neither. By the time a diagnosis is given, most patients have suffered mild cognitive impairment for years prior. And it is impossible to estimate accurately how long any one individual's battle will continue; my mother was given an estimated three years to live when she received her diagnosis. That was eleven years ago and she still lingers at the late mid-stages of the disease. 

Sometimes, no, most times, caregivers are fighting battles of their own cognizant with the enforced schedule and responsibilities imposed by a loved one's dementia. I am emerging from one of those difficult times, having suffered 6 months of successive, minor health problems that have left me weak in body and tender in my spirit and emotions. Valleys are hard and unfair. And so this morning I've decided to seek Scriptural encouragement for how we can proceed through the Valley of the Shadow and yet remain steadfast in faith and hope.

Let's look to the hope we have in Christ Jesus so that we may gain strength for the hard times as we accompany a loved one on the long journey through this hateful disease.

Instructions for hard times:  

Be joyful in hope, patient in affliction, faithful in prayer. 
--Romans 12:12, NIV

When we've failed to exhibit kindness to our care recipients, remember that our Lord Himself intercedes for us. Once we've been refreshed by His solace we are to extend this same love and acceptance to those He's chosen to receive our care: 

Simon, Simon, Satan has asked to sift all of you as wheat.  But I have prayed for you, Simon, that your faith may not fail. And when you have turned back, strengthen your brothers.
--Luke 22:31-32 NIV

Therefore he is able to save completely those who come to God through him, because he always lives to intercede for them.
--Hebrews 7:25 NIV

When we are judged by others for the decisions we make for ourselves as caregivers or our loved ones; struggles when the ways we choose to allot our time and ministrations are resented; heart hurt when we are judged as being inadequate or having fallen short to do what others feel we ought to have done: 

The Lord says, “I will rescue those who love me.
    I will protect those who trust in my name.
When they call on me, I will answer;
    I will be with them in trouble.
    I will rescue and honor them.
---Psalm 91:14-15 NLT

And I will ask the Father, and he will give you another advocate to help you and be with you forever—
John 14:16 NIV

I cry out to God Most High, to God, who vindicates me.
--Psalm 57:2 NIV

And these Psalms in their entirety: Psalm 27 Psalm 91, Psalm 43

The importance of hope: 
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 27:23-14 NIV 


Tuesday, April 28, 2015

Let the Little Ones Come...

Mom and our oldest grandson, Daniel, when he was 2. 
When they are in a comfortable environment with people who have become familiar to them, small children may exhibit wonderful empathy for an elderly person with dementia.  I love the photo above of my mother with our oldest grandson back when he was just two years old.  Daniel was a laid-back toddler and usually happy to oblige loved ones who wanted to cuddle.  I love the expression on his face here; he looks kindly indulgent.  One of his little hands rests on Mom's wrist, the other mimics her pointing at a feature in the book, and he is gamely looking at the story detail she is pointing out to him. He is, in short, ministering to my mom, who had invited him to sit on her lap.

Daniel's little brother, Logan, who is now exactly the age Daniel is in the photo above, spent time with Mom yesterday afternoon.  I'd brought him out to bake cookies with Grammy (me), but as soon as he arrived he announced, "I'm goin' in to see Roof. (My mom's name is Anna Ruth, and the kids are instructed to call her "Grandma Ruth," but "Roof" is Logan's abbreviated form of her name.)

No one had asked Logan to visit Mom, but as toddlers, both my grandsons have been delightfully uninhibited by any need to distance themselves from disease-related behaviors.  It isn't that they don't notice dementia symptoms, but more that small children are governed by a compassion that spurs them to find a way to communicate.  Logan strutted into Mom's apartment, and when she didn't look up he said loudly, "HI ROOF!"  Mom responded with delight.

Now, Logan is very different from his brother, and does not give hugs unless 1) they are his idea and 2) the hug-recipient is his mother or father.  But he has a precious empathy for his great grandmother nonetheless, and he surveyed her appraisingly, hands on his hips. After a few moments of thought, he attempted to entertain her with some dance steps, but Mom soon lost interest.  And so he ran to his toy cupboard and said, "I need a game that Gamma Roof an' me can play togevver."

I was at a loss; Mom isn't very interactive, and Logan wasn't going to sit side-by-side with her in the chair with a book as Daniel once had done.  As I hemmed and hawed, Logan decided to take matters into his own hands. Turns out that in his mind, a good game was one in which Logan displayed talent and Grandma Ruth's attention did not waver.

He chose a box of magnets and metal connectors and sat down with them at the foot of Mom's chair.  "Look at 'dis, Roof!" he said...and he proceeded to create amazing sculptures and then hold them up for her to admire.  Whenever her attention seemed to fade he would stand up, say her name, and redirect her to attentiveness; it reminded me very much of how I used to speak to a class of first graders when their attention wandered.  The amazing thing about Logan's interaction with Mom is that although he had to work hard to keep her engaged, he managed to do so for nearly 30 minutes.  I'm astounded that two months short of his third birthday, Logan had the fortitude to sustain a social-type interaction with her for a longer period of time than her Alzheimer's has allowed since--well, since the last time Logan visited.

Sometimes, parents may feel they are protecting their little ones by preventing them from contact with elderly relatives, but young children are uninhibited by fear of of dementia-related behaviors. Of course the interactions must be closely monitored, and you wouldn't expose a child to angry or violent behaviors. But when the child is given a measure of control over the situation and the dementia patient responds with smiles, the results can be heartwarming.

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:

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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.