Friday, October 28, 2011

Feeling Not Bright

When something happens that makes me feel not very bright, I don't handle it well. When I have to depend on the greater skills and understanding of others it makes me feel incompetent, and I lapse to self-condemnation.  

Today I was mapping my route to Abilene, Kansas where I will attend an authors' gathering at the community center from 1:00 to 4:00 p.m, October 29.  Come if you live nearby; it sounds like a neat event; a gathering of about 20 Kansas authors.  John and I will be sitting behind a basket of mini-Snickers, offering signed copies of my caregiving book for sale for just $9.25 plus tax--a bargain! You can read more about the event here:  Abilene Author Roundup

Preparing for this event required me to figure sales tax and map a route, and let's just say that math skills and directionality are not my areas of expertise.  I knew I wanted to charge $10 including tax for my book, and that the sales tax in Abilene is 8.15%.   

I tried algebra.  I was not terrible at high school algebra, a fact that occasionally leads me to bursts of over confidence. 

On the first post-it note I wrote:  .0815x + x = $10.00. 

On the second post-it, I divided both sides of the equation by x.  

I wadded up both post-its and started over.  I thought maybe I had two variables. Maybe it should have been .0815x + y = $10.00.  I realized I did not know how to solve for two variables.  I had a vague notion of what you already know; I was being dense. I wadded up that post-it. 

I decided to use words.  I am good with words.  .0815 times what I want to charge for the book is the sales tax I'll charge and to that I'll add the cost of the book and that will equal ten dollars.  So the variable is the pre-tax cost of the book.  One variable after all. 

I swallowed my pride and texted my daughter, who more quickly than I can finish word processing this sentence, texted me back with the answer (charge $9.25 for your book, Mom, .75 sales tax).  Before she became a stay at home mom she was a junior high math teacher.  Any one of her former students could have undoubtedly helped me out. 

"How did you do that?" I texted back.  

"10 divided by 1.0185,"  she replied.  

"Oh. Thanks."  

There's the ever present fear I might be getting Alzheimer's but then I decided, no, I've always been dense at math. 

So then I began to plot my course to Abilene.  We live only a couple hours away, it shouldn't have been difficult.  I went to Google maps.  I poured over the directions.  Not hard.  But I became suffused with a familiar, helpless sense of directionality confusion as I tried to think my way through east and west and right and left, and even though I own a Tom Tom (a GPS device that plugs into my cigarette lighter and gives me directions in a calming, British accented voice) I felt that sense of apprehension that always attacks when I have to navigate to an unfamiliar place.  

My husband came home for lunch and said, "Guess what! I can go with you tomorrow, so don't worry about finding your way."  I should have felt happy and relieved.  Instead I had to swallow irritation.  I wanted to be able to manage by myself.  I will be glad, very glad for his company and the day will be so much more pleasant because he is along, but I felt incompetent.  

Awhile later I went in to my mom's apartment to help her shower.  I was feeling stung over my incompetence at math and maps, and as we went through the preliminary steps to the bathing ritual I suddenly realized how often Mom must have to endure these same kinds of emotions.  How soul crushing to feel that you are being treated as though you aren't even bright enough to know which body part has been washed and which hasn't!  Mom doesn't remember that she doesn't remember, and so when I give her directions she must feel that I'm being patronizing. When we were new to the roles of caregiver and patient she would often say, "You must think I'm really stupid."  We've come to a more comfortable place now, and Mom seldom protests my sometimes thoughtlessly phrased commands.  With true humility she follows my directions even when I am preoccupied or taciturn. 

It was good for me to be reminded today of how it feels to have difficulty understanding concepts that others around me comprehend easily. Dementia patients have to cope with this kind of confusion often.  It is not surprising that depression can be a side effect of dementia.  It is very sad to feel "not bright." 

I found myself chatting comfortingly to Mom, thinking hard of ways I could make her feel good about herself.  I complimented everything from the condition of her skin to how well she puts up with me.  And you know what she said?"  

"Well, my daughter takes good care of me and most of all, God is with me." 

Well, I'm a slow study, but God is with me and has provided me people to take good care of me when I can't handle things myself.  I feel humility and gratitude today, and that's lots better than pride.  

Thank You, Lord. 

Sunday, October 23, 2011

And One More Word About the Importance of Respite...

I've read so much of Laura Ingalls Wilder's writing as well as the words others have written about her that I feel I know her better than I knew my own grandmother.  Her Little House books won me over when I was a third grade student at Crestview Elementary School in Merriam, Kansas, many, many years ago. As an adult I've grown to respect Laura's faith in God, her knowledge about the things that are really important in life, and the words of wisdom she wove throughout her books.  

Today I found one of Laura's quotes in a book by Dan L. White.  This quote reminds me of my last blog post, which talked about the little vacations a caregiver needs to weave into each day in order to avoid mental and emotional weariness: 
"We can take a wonderful vacation in spirit, even though we are obliged to stay at home, if we will only drop our burdens from our minds for awhile.  But no amount of travel will give us rest and recreation if we carry our work and worries with us."  Laura Ingalls Wilder, quoted in Dan L. White's Laura Ingalls' Friends Remember Her: Memories from Laura's Ozarks Home
During my devotion time it is difficult for me to drop my burdens for even a little while.  I know this grieves the Lord's heart.  Just think of a loving Father, standing with arms outstretched, ready to carry His child's heavy load.  But the little child ignores her father and stubbornly clings to the idea that she's the one who has the responsibility to carry her own burdens. 

I'm thinking today of the "vacation in spirit," as Laura calls it, that we need to take every day through prayer, praise, and Scripture.  Sometimes I feel that my devotion time is one more thing to be checked off my "to do" list.  Thinking of this time with the Lord as a mini-vacation might just help me to partake more fully of the refreshment that's available when we sit at His feet.  

Scripture:  “Come to me, all you who are weary and burdened, and I will give you rest" (Matthew 11:28).

Tuesday, October 18, 2011

Need a Bit of Respite?

Caregivers need to take time away from the unrelenting demands of caregiving.  For the Christian caregiver, daily time with the Lord is a must.  We are to find our rest in Him. 

Sometimes though, I know it is o.k. to read a good book, watch a wholesome movie or take a nap. We caregivers don't get many opportunities to take a true vacation, and so small periods of respite within the course of each day become important. 

I have a collection of books that provide me this kind of respite.  Jan Karon's Mitford series, James Herriot's tales of veterinary work in the Yorkshire Hills, and Laura Ingalls Wilders' Little House books are some of my favorites. 

I also love to write funny or entertaining stories and share them with others.  If you are a caregiver in need of a little bit of light reading, you might enjoy my farm blog.  When my teaching job was discontinued by the school district, I chose to take early retirement and spend more time helping my husband on the farm.  To say I'm out of practice with such pursuits is an understatement. My friends are enjoying the blog's description of my mishaps!  You might too. If you need a little respite today, please accept my gift to you of a funny story or two at Back Home on the Farm.

If the link doesn't work, cut and paste this into your browser: 

Monday, October 17, 2011

Something's Not Quite Right Here!

During Lenten season the spring before my mom was diagnosed with Alzheimer's, someone draped a simple purple stole over the Cross at the front of our church's sanctuary.  The first Sunday of Lent we found our seats in our pew at church, and as soon as Mom looked up she became very upset by the fact that the stole did not hang evenly.  It wasn't supposed to be even; it was arranged artfully so that one side hung about a foot higher than the other.  I explained this to her repeatedly, but each week she would become oddly disturbed when she focused on the stole.  "It should be even!" she said angrily.  "I don't know what they think they're doing."  

This was one of the early signs of Mom's dementia, but in the seven years since her Alzheimer's diagnosis her  upset over small things that are not as they should be has remained. 

"Would you straighten the window shade...the print on that white board is slat in the blind is bent...can you turn that cushion on the couch so the design is right side up...."  Mom surveys her world from beneath a ferocious frown and makes comment on things that aren't quite right. 

If there were a list of rules for caregivers, "Don't take things personally" would be ranked at the top, and is certainly the caregiving rule I break most often. It is unfair for me to respond as though Mom is deliberately being hurtful when I know that her behaviors are dementia related.  And yet, I work hard to keep Mom's environment pleasant, and it seems to me that she spends an unreasonable amount of time commenting on small things that aren't quite perfect. I can't help but feel a little hurt when she seems to constantly focus on things that are wrong instead of commenting on things that are right. 

However, there is a cognitive basis for this behavior.  Dementia patients have a tremendous struggle to make sense of the world.  So many things are difficult for Mom to understand; her questions  reveal the depth of her confusion: "Why am I here?  Who takes care of me?  I know you are Linda, but who is your husband?"  In the face of so many confusions, the ability to notice small things becomes like an anchor she can cling to.  Mom knows that writing is easier to read if it is not smudged.   The shade should not be crooked.  The pillow looks better right side up.  She comments on such small things because these are things she knows, and on a deeper level, I think her attempts to put small things to rights reflect her ongoing struggle to make sense of a world that is increasingly incomprehensible for her. 

I'm praying today for patience and understanding as Mom works hard to set her crooked world to rights.  

Thursday, October 6, 2011

God and Alzheimer's

People wonder about how a loving God can allow bad things to happen, but when the bad thing is Alzheimer's disease, the question of "why" is not usually the first one that comes to mind.  There is an initial panic, and the questions run more like this: "What am I to do?  Where do I find help?  Who will make decisions? How will I survive?"  

When my mother was diagnosed with Alzheimer's, I cried out to the Lord with these kinds of questions.  

I've learned that great emotion of any sort--grief, pain, or fear--can keep us from hearing God's voice clearly.  It is at times like this that having a history with the Lord is extremely helpful.  The first time a terrible crisis of grief or pain is encountered reminds me of the caliber of fear I experienced as a child when I suffered a bad dream. The first time I awoke in the night following one of these bad dreams, I believed the nightmare was real and my terror was intense.  But although I went through a phase during which I suffered recurring nightmares, the fear was never again so all encompassing as on that first occasion. On a subconscious level I had become aware that the bad dream was not real, I would wake up; and everything would be alright.  Similarly, although I was miserable and afraid at the time I was told my mother had Alzheimer's disease, I had a healthy confidence that the Lord was going to help me simply because I knew He had helped me in the past. 

When we've walked with the Lord for awhile, we learn that even though we may not be able to hear him clearly, He is with us nonetheless. God's presence with us does not depend upon our ability to perceive Him.  His power, presence, and provision in our lives do not depend on us at all, but on Him.  When we belong to Him, we have the right to cry out to Him; and He isn't particular about how we do it.  Eloquence is not required.  The prayer might take place while on a solitary walk, in a roomful of people, or leaning with one's head on the steering wheel of a parked car sobbing out broken words of anguish, as I found myself soon after my mom's diagnosis.  He hears our prayers.  

If you are in the midst of your first major life crisis as a Christian, please trust what I tell you now; the Lord will help you.  He will help you in ways you can't see or imagine.  As you trust Him and cry out to Him the path before you will be made clear.  Don't be afraid.  He loves you, and He will take care of you.  

Here is comfort from Scripture: 
God does not willingly bring grief or suffering (See Lamentations 3:33;) His will flows over all that is grievous and changes darkness to light (See Psalm 18:28;) all things are incorporated into and transformed by His perfect will (See Romans 8:28;) where time and eternity touch, His will is done on earth as in Heaven (See Matthew 6:10;) we can’t yet perceive what we will one day see clearly because we walk by faith and not by sight. (See 1 Corinthians 13:12.)
Back in April I wrote a post entitled "Where is God in Alzheimer's?" and included the guidance the Lord has provided me these past seven years as I've learned to live with my mom's failing memory and to trust the Lord day by day for the path that lies ahead.  If you are hungry for more comfort and help from the Lord in the wake of a diagnosis of dementia for yourself or someone you love, I pray you will be helped by what you find here.  Clicking on the title of the post at the beginning of this paragraph will take you to the April post. 

Monday, October 3, 2011

Respite Care

I believe there is often confusion about the meaning of respite care. It must be understood that respite care is relief provided to the caregiver.  There is a tendency even among caregivers and respite care providers to think that respite should consist of care provided directly to the patient.  This isn't necessarily so.  Respite care is any task that would provide the caregiver stress relief, including (according to my respite caregiver, Sandy) cleaning my kitchen floor.  Each week Sandy appears, visits for a few minutes with my mom, and bids me goodbye (even if I'm only going upstairs to work on writing assignments or to rest).  She then works her way around my home doing any housekeeping task she can see that would make my life easier.  Meanwhile, for that brief time she is here, I am completely free of responsibility to my mom.  During Sandy's work hours in our home , if Mom calls, Sandy answers; and meantime household chores that have gone undone are taken care of for me.  Respite indeed! 

We sometimes fail to take into account the fact that caregiving brings emotional burdens that many times--no, I'm going to say MOST times--outweigh the physical work involved in taking care of someone who is infirm.  Caring for someone who is dying is the most emotionally stressful form of caregiving. When we are involved with a disease such as Alzheimer's and the dying process is lengthened over a long period of time--it has been 7 years and counting for us--well, let's just say that respite is sorely needed.  

The most valuable services Sandy provides for us don't have to do with the time she spends with my mother, but with the thoughtful things she does to make my day-to-day life easier.  She recognizes that I am the one who carries the grief and burden of caring for my mom, and that her job is to lighten my load wherever she can.  We are blessed by her presence in our lives; thank you, Sandy. 

The following is a list of Sandy's stellar qualities, and can be used as a guide for understanding what constitutes good respite care:  
  • Prays for the caregiver and care recipient
  • Recognizes that the job of respite caregiving is to lighten the load for the primary caregiver and focuses on the caregiver's needs
  • Understands that the caregiver bears burdens that can't be seen and is accepting of grief and stress related behaviors (aka, grouchiness)
  • Empathizes with the terrible grief of seeing a loved one behave in aberrant ways and never makes jokes about the patient's disease related behaviors
  • Does not repeat stories--humorous or otherwise--about the patient or caregiver, and practices complete confidentiality 
  • Does not criticize the primary caregiver's caregiving decisions, recognizing that while the respite care provider spends just a few hours each week in the caregiving environment, the primary caregiver is there 24/7. 
  • Remembers that the patient's current condition not an accurate portrayal of the person he/she once was, and does not judge him/her for disease related behaviors.  
  • Is honest and trustworthy 
  • Treats the patient with kindness and empathy, aka, love
If you are the primary caregiver for someone who is infirm, please do be proactive to find time away.  Whether the respite care occurs in one's home or entails finding a nursing home or daycare provider that will take your loved one for a regular time away from the pressures of caregiving, respite care is a vital part of providing long term care to a loved one.