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.



Sunday, February 8, 2015

Reminders

My mother's Alzheimer's disease has progressed so slowly that I'm sometimes lulled into the sense that our status quo is unchanging. This causes me to react poorly when Mom exhibits new symptoms. After ten years of caregiving you'd think I'd know better by now; but I sometimes need to remind myself of the need to be flexible, ready to adapt to Mom's changing needs. This morning I wrote a list of reminders: 
Mom operates from a damaged internal timetable and not according to the tidy schedule I've posted on her door. When she calls for no reason I can immediately see, I don't have to be manipulated by childish or rude tactics, but it is my responsibility to address any underlying need.    

I won't always be able to diagnose her needs accurately, but that doesn't excuse me from trying. She may say she wants to visit when she really wants a snack. Or, she might say she wants to come over into my part of the house when she really needs to use the restroom. I must accept the responsibility to be a bit of a detective and that I need to give the time to try several different solutions.   

God doesn't ask me to submit to what is sinful in my mother, but she will become increasingly unable to express accurately express what she lacks, and even physical discomfort will be mis-expressed. Her stock answers and complaints will become her only way to express any kind of need or discomfort.  I must learn to respond to her need and not necessarily to her actions and words.  It is my  responsibility to check her over and make sure she doesn’t have  physical discomfort, and to pray for her to be certain she doesn’t have an emotional or mental disturbance.  I am obligated by the terms of the anointing God has given me as my mother's caregiver to place her needs above my own plans for the day.
It's human nature (sin) to rebel against submitting to another person. This trouble with submission causes discord between caregivers and patients; the caregivers feels resentment because the patients' needs must take precedence, and the patient is upset by the need to submit to a caregiver's guidance. As Mom's caregiver I need to put aside my adolescent reluctance to submit to the demands of her genuine need. I also need Godly wisdom to discern whether she has true need--or not.  As Mom says, "It ain't easy, Breezy!" 

It wouldn't be right to end this post here. I've made it too straightforward; my solutions, though accurate, are too tidy. I haven't addressed the sense of betrayal I feel when my mother attacks me with a barrage of hateful words; her Alzheimer's causes a childish self-focus that is hurtful for me as the former apple of her eye.  In my mind I know her behaviors are mostly disease related, but my heart doesn't always get the message, and some days are harder than others. It is a constant struggle to keep my heart pliable in God's hand so that I can retain compassion toward Mom. 

My mother has forgotten that I am her precious child, but the Lord does not forget me.  And, "...Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness (Lamentations 3:22-23)."
<><
Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you...Submit to one another out of reverence for Christ. Ephesians 4:32, 5:21

Sunday, February 1, 2015

Value the Differences


This week John and I watched the movie Temple Grandin, with Claire Danes in the lead role. The film chronicles the life and work of a woman who was diagnosed with autism at age two, but went on to use her brilliant but different-from-the-norm mind to revolutionize the way cattle are handled in feed yards and packing plants across North America. The real life Dr. Temple Grandin* is a professor of Animal Science at Colorado State University and an award winning author and speaker. My response to her story from the perspective of a former teacher and current caregiver was profound gratitude for those who view the world differently. 

The overwhelming message of the film is the importance of recognizing the value of people who differ from the norm. We must work hard to understand what they try to tell us because their ability to think outside the box can benefit us all. Temple Grandin’s life has been blessed by her amazing intellect, but also because she found people who took the time to understand her unique solutions to problems others could not see. Without those empathetic teachers and mentors, her message might have been lost.

We avoid finding strands of commonality with those who are different or damaged because we are afraid. I’ve learned that interaction with an Alzheimer patient requires courage; we must overcome the reluctance to delve too deeply into the ways a damaged mind functions. It’s as though we fear that understanding how their minds work might create similar differences in our own brains. We distance ourselves from conditions that, if acquired, would make us susceptible to rejection or the vulnerability of illness. This reluctance to understand and listen has to be overcome if we want to be good friends, caregivers, and teachers. We risk missing the blessings those who see the world differently can provide.

I can relate to these lessons because one of the pitfalls of caregiving is the temptation to give way to the need for emotional self-preservation. It is a challenge to stay fully present for a loved one who is struggling with the confusion of Alzheimer’s. For example, in this tenth year since her diagnosis of Alzheimer’s, Mom fills page after page of spiral notebooks with words, and there is a temptation to give up my attempts to decipher her writings. With a chosen ignorance, I might protect myself from signs that she is deteriorating, but I would also lose the nuggets of wisdom and joy she still has to offer.  

This morning I pulled one of Mom’s journals from the shelf by her chair and opened it at random to find this day brightener:

I’m grateful for simple pleasures of a cold diet coke and a nice writing pen! Don’t get around much anymore, nevertheless—I have memories! Doesn’t take much to please a senior citizen, just our Lord and some nice music…don’t get around much anymore but we have fun! 

Today Mom’s words provided an unexpected lift for my day; another time they might give insight into her wants or needs. It is important that I keep paying attention, because even though Mom’s thinking patterns have become different from the norm, her thoughts and words have value still. 


 *Dr. Temple Grandin’s Autism Website: http://www.TempleGrandin.com

This post originally appeared as a Caregiver's Corner column in the February, 2015 issue of The Lebo Light

Sunday, January 18, 2015

Ten Years and Counting...

I've grown used to a look of incredulity on peoples' faces when I tell them my husband and I have taken care of my Alzheimer's mom in our home since November of 2004, and I can hardly believe it myself.  But from my vantage point ten years into this adventure, I am able to see ways God has brought blessing to us not only in spite of this difficult situation, but through it.

When I began this post I tried to include all of the amazing ways God has taken care of us while we have provided care to Mom, but the list was long and some of the details seemed too personal too share.  Suffice it to say God has provided for our jobs, finances, and living conditions in ways that at times have seemed miraculous. And, though I'd always known my husband was a pretty admirable guy, he gained hero status in my eyes by his willingness to partner with me to care for Mom.  I can honestly say that taking care of Mom together has blessed our marriage. 

I couldn't see the potential for any of these blessings on that day back in the spring of 2004 when the doctor said, "I am confident of the diagnosis of Alzheimer's disease for your mother. She meets all of the criteria."  I thought it was the end of the world as I knew it. But as we prayed, asked others to pray for us, and earnestly sought God's will, we became convinced that we should provide care to Mom at home.  Step by step the way opened for us to do so.

Through Mom's Alzheimer's I've learned the truth of the statement, "Where God sends, God will provide." The transition period was rough, but we've had more or less smooth sailing since that first difficult year.

If you are a Christian struggling with a transition into the caregiving role, I hope this post serves to remind you that the Lord hasn't let you down yet, and He won't now.  Remember that God provides us just enough information to navigate the worries of today, and He expects us to trust our tomorrows to Him.  Whether you are facing nursing home placement, home care, or end of life issues for someone you love, God is faithful.  It is safe to leave the future in His hands. 

Sunday, January 11, 2015

Mom Writes and Sings

My mother is 90 years old and was diagnosed with Alzheimer's ten years ago. We've had our share of drama along the way--there was the 911 call (I'd missed her telephone message requesting a package of saltine crackers so she called the police).  There was the time she got angry at me for suggesting we take a walk, and while I ran upstairs to take a phone call she decided to go alone (sans coat or outdoor shoes on a 30 degree day).  There was the fall over a throw rug that resulted in a broken collarbone (I was a novice caregiver; elderly people should not have throw rugs in their paths).  We've weathered stomach flu, cataract surgery, and a couple of really bad colds that threatened to turn to pneumonia but did not. 

I share the above incidents because I don't want you to think that our path has been atypically uneventful or to imply that because of our faith in God everything's been easy.  But over these ten years of time my fear of the disease has decreased as I've seen my mom coping well in the moment she's in because she consults God about every little thing.  And because I figure I can learn to do the same, I believe that I have the best insurance possible against an Alzheimer's diagnosis of my own.  If worse comes to worse, God will be with me as He has been with my mother before me. (But Lord, I would ask to be excused from dementia if at all possible, AMEN!). 

My mother writes constantly, filling page upon page of spiral notebook after spiral notebook, and I believe this is one reason she's done as well as she has for as long as she has. Sometimes the lined sheets are filled with nonsensical or illegible words, but very often her thoughts are coherent and uplifting. It is encouraging to me that although Alzheimer's patients have lost memory of the immediate past, they may, far into the disease process,  retain the ability to enjoy life in the present moment. Also, it is interesting that Mom can list our names and relationships accurately as she writes but when she speaks with us often asks questions such as this: "Now, who are you? Who are you married to? Where do you live?" For my mother, the act of writing seems to help her link to memory.

Caveat: You probably can't teach an old Azheimer patient a new trick, such as journaling. But there is some evidence that a habit of journaling pre-Alzheimer's is helpful after the diagnosis. 

Here are some excerpts from Mom's journal--the January 1 entry is a typical section when she is a little more lucid, the January 2 entry illustrates her more garbled entries:
January 1, 2015 Thursday afternoon--Anna Ruth Williamson, 88 years of age (she's actually 90) is blessed to be allowed to live in this very nice apartment attached to the farmhouse. 
There is a large 3 way window looking out on the winter world.
I feel so blessed to have this apartment in which to reside. My L.R. furnished with divan and 2 big chairs--one very comfortable for me. I do appreciate. Thank you Lord, Linda and John.  
John Edgar in to visit awhile on his way to different chores...good.  
My personal Christmas tree pleases me so beautiful and thinks me of early Christmases in past. Now! Old and Senile. 
Friday, Jan. 2, 2015 (She is apparently interacting with the Christmas music that's playing in the background. BRB is her code for "bathroom break," and AR is her abbreviation of her own name.)
Come let us adore him - repeat - Jesus our Lord - We listen - guidance all I can get - O come let us adore him repeat Jesus our God - Orchestra (illegible portion) I wait: orchestra listen! Christmas Day. 
Need help assistance as possible ---orchestra races Tidings of peace & joy -- we listen--sleep. warmth--thank you! comfort & Joy (she must have dozed off here, she often does)! 
Hold! Orchestra plays on -- we listen--Information please! Wait! Help--orchestra--nice on & on! Need BRB. Why not moving? Lazy...
Back from BRB...
...In silent adoration!! I'm home!!! Praise!!!! How great thou art!!!!!!
A.R. smiles and enjoys what is...
Well, there you have it. Anna Ruth smiles, and enjoys what is!  




 

Wednesday, December 31, 2014

Nifty Christmas Gifts for my Alzheimer's Mom

My mom received some really lovely Christmas gifts this year that other dementia patients might appreciate, so I'll share them here.

Mom loves her dementia digital clock (right).  I was concerned that she might not be able to read the date, which is relatively small, but the contrast between the numerals and background is good and the clock is well lit, so she has no problem. The dementia day clock (left) eliminates a.m./p.m. confusion.  It may be coincidental but since Mom received her day clocks, she hasn't called me at 2 a.m. to ask what time it is! 

We of course did not use the term "dementia" to describe her new gifts for her.  I said, "These are for people who are retired and no longer have set schedules, to help them keep track of their days." 

A cozy cardigan and a soft lap robe. 

Mom has always loved cardinals--she calls them red birds.  Our daughter-in-law found incredibly soft flannel sporting Mom's favorite feathered friends, and tied a lap robe for her.  Mom loves it--she keeps exclaiming, "This is so soft!".  The lap robe has the added benefit of being especially warm, so I can lower the thermostat in her room to a level that keeps me from gasping for air as I go about caregiving chores. The red cardigan we gave her just happened to coordinate with her new lap robe so she looks as cheerful as she feels. 

Some Alzheimer patients might be offended by children's picture books, but not my mother.  She loves her "My First Little House" books, and reads them aloud as for an audience. 

Another favorite gift is the hymn songbook and c.d. gifted by our daughter and son-in-law.  The songs go a bit fast for her but Mom doesn't care.  She often has the book open to a different hymn than the one playing on the c.d., and sings her own tune quite happily.  I tried turning the c.d. off because the dissonance bothered me, but Mom objected.  "Why'd you turn off my music?  I'm singing with it!" she said. If she's happy I can put up with two unrelated joyful noises being raised together!

We are settling in for a cozy January here in Kansas thanks in part to these items that, for now, have raised Mom's contentment level. Happy New Year from our home to yours.