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. 





Sunday, December 14, 2014

Hope

A few months ago my daughter and I volunteered to teach the first through third grade Sunday school class at our local church. I was ambivalent about this new job assignment because caregiving duties for my mom can only be expected to increase, but my grandson is in the class and no other teachers volunteered. And so we took up residence in a tiny room scarcely large enough to accommodate a half dozen pupils and two teachers.

Our classroom's single table became cramped as attendance increased, and a week ago we realized that if there were no absentees in any given week, we would have more students than chairs or table space.  We discussed finding another small table and finally agreed that I should bring a card table.  But I didn't do it.  My card table was just too big for the allotted space.

When I walked into our classroom this morning, there sat a new little table, the perfect height and size. "Did you arrange to have this table put here?" I asked my daughter.  But she had not mentioned the need to anyone, nor had I.  We learned later that refreshments had been served from that little table at a function earlier in the week. Someone had pushed it into our classroom to get it out of the hallway and then apparently had forgotten it. We remembered to thank the Lord for providing for us and I was aware this was an affirmation that despite my stressful caregiving schedule, teaching Sunday School is something the Lord wants me to do.

Awhile later, I rummaged through a cupboard looking for additional Bibles for our classroom. I found a worn children's Bible, flipped open the cover, and was startled to see an inscription in my own handwriting. I stared at the date--December, 1982--exactly 32 years ago.  In that moment as my 60-year-old self stared at an inscription I'd written as a 28-year-old Sunday school teacher, my past juxtaposed with my present, and I saw that God has woven a theme of ministry to children throughout the fabric of my life.  For just an instant it was as though I was freed of my usual myopic fixation on the present moment and was enabled to share the Lord's perspective. I was reminded that He sees the whole of my life from birth to final breath, and is sovereign over all. 

Taking care of someone who has Alzheimer's disease can wreak havoc with hope. It is easy to focus upon my own fear, and difficult to avoid projecting possible future outcomes based on my present, limited perspective.  Today a new table and an old Bible reminded me that God knows exactly where we are on our individual timelines.  He sees our lives from beginning to end, and is present with us at every juncture. Nothing takes him by surprise--and He has made provision for us every step of the way.  It is safe to place our eyes firmly on a God such as this. It is safe to hope in Him, even in the midst of a journey through Alzheimer's. 

Thursday, December 11, 2014

Like a Dorm Room (Only Quieter)



My mother is in the tenth year since her Alzheimer's diagnosis, has the beginnings of macular degeneration, and is 90 years old. It is amazing that she manages to navigate her little apartment as well as she does. But recently, despite the nightlights in her bedroom, she has seemed disoriented as she's maneuvered her way from the bathroom back to her bed during the night, even though it is only a dozen steps away.

Taking care of someone whose condition is deteriorating requires the ability to adapt to increasing levels of need. I admit that flexibility is not my long suit, but there is another factor at work that sometimes causes me to ignore signs of Mom's diminishing abilities; I don't want to admit she is failing. Despite all I know about Alzheimer's disease, I have an emotional reluctance to recognize signs of Mom's physical and cognitive decline. 

When Mom began to complain of having trouble finding her way, her room conditions were exactly the same as they've been for the past ten years. There were two nightlights in her bedroom along with three nightlights in the living area.  Nothing had changed but her ability to function in her environment, which I was slow to admit. Thus, I essentially allowed my poor mother to stumble around in the dark for a few weeks before I gave careful thought and prayer to how her environment might be adjusted, not only to ease her confusion but also to decrease her risk of a fall. 

I'm pleased with our solution to this problem. Earlier this week I ran a strand of white Christmas lights behind Mom's two dressers, gathered the extra length into a clear storage box (being careful not to bend or put pressure on the wires) and pushed the box underneath Mom's bed. The result is a soft glow that outlines the shape of her bed clearly, but when she is in bed the light is behind her and she is not bothered at all.  In fact, she's been calmer and has seemed to feel more secure; last night she said, "It is so cozy in here."  And indeed, her softly lit quarters now boast a sort of dorm room ambiance.

Most of us struggle with a period of denial when loved ones lose the ability to function as they once did. Throughout the course of a an illness, the caregiver/patient relationship has to be renegotiated as the care recipient's needs increase. As we stand on the threshold of the final stretch of Mom's Alzheimer journey, I pray for wisdom to understand and grace to respond quickly to her increasing needs.



Sunday, December 7, 2014

God Has a Plan

I've blogged for a long time, about ten years now. Once in awhile--not often--I've been surprised by sweetness of friendship with someone I've met only through blogging and subsequent emails.  This happened for me recently when a series of coincidences between my life and that of a precious new blogger friend occurred, connections that seemed to shout "Here is a heart friend for you; one connected by His very hand for comradeship on your earth-walk and as a fellow child of God throughout eternity!"

News came this week via this dear new friend of an incomprehensible sorrow.  I'm not going to repeat the details here because the story is not mine to share, but even if you (like me) avoid reading newspapers you have not been able to avoid reports of similar grievous events that just make no sense to us.

I'm not going to spend time postulating reasons that bad things happen, I only want to share the phrase that came strongly to me as I began to pray for the family impacted by this sorrow: God has a plan.

How can I convey in mere words the overwhelming sense of comfort and rightness that came with this knowing: our Lord saw this event ahead of time and has planned for it since the beginning of the world. He has a plan for each precious life impacted by this sorrow. Things aren't going to be merely "all right;" they will be surrounded by His presence, shaped by His love, and in the end actually blessed not only despite this terrible grief but even through it.

No, I don't mean to tell someone who has lost a loved one that everything will work out and they'll even be blessed by this loss. This is so trite as to be untrue; our lives are incredibly precious and the Lord Himself wept when his friend, Lazarus, died. But we serve a God who possesses resurrection power, and He does not hesitate to use this power on behalf of His grieving children.  He disarms the enemy, provides healing balm for broken hearts, and is able to transform the saddest of circumstances into vehicles for His love to flow.

At the moment of a devastating diagnosis, a tragic event, or any other heartache that can come to us, God is present with us, and He has a plan.  We may not be able to see it when we are blinded by grief, but we can trust in the love of our God and know that He is going to see us through according to the beauty of His perfect power over every circumstance of our lives.  I've seen this in my mother's life; even a ten year trek through Alzheimer's disease is no match for our Lord. I have seen blessing upon blessing come to our lives not only despite Mom's Alzheimer's, but through it.  How like our hero, the Lord Jesus Christ, to use the enemy's ploys as stepping stones to victory!

We can trust our Lord's perfect love and His sovereignty over every circumstance of our lives. I'm praying the peace of this knowledge for people who are hurting today.  May our Lord meet your every need and provide you the comfort of His strengthening and healing love. 

Friday, November 28, 2014

In His Time

In the months before she was diagnosed with Alzheimer's ten years ago, my mother was in crisis.  I spent hours in prayer for her and helped her every way I knew how.

Mom's disease had already progressed further than we knew at the time. The devotions I wrote for her and the prayers I prayed seemed to bear no fruit; the opposite seemed true because Mom resented my interference in her life. This sort of response is not uncommon for new Alzheimer patients; it is hard to accept the need for change, and the confusion of early dementia exacerbates fear and shades perceptions.

Mom suffered a terrible fall the first winter after we brought her to live with us.  She broke her collarbone and then, sent home from the hospital to recover, suffered a cold that turned to bronchial pneumonia. I thought we were going to lose her, but instead the Lord brought healing.

For several years resentment toward me simmered throughout most of Mom's responses to my overtures.  She hated having to bathe, take a walk, or go to bed just because I said it was time to do so, and her Alzheimer's made her forget that she had lost motivation to do these things on her own.

This past year I put the devotions I'd written for Mom into book form, and matched the readings with the hymns she loves. Though my name is on the cover of the book, Mom's Alzheimer's has now progressed to the point that she doesn't realize that her daughter wrote this devotional.  Last night I was in her apartment emptying trash cans and removing dirty dishes when she said, "Just listen to this wonderful devotion..." and she proceeded to read aloud words I'd penned, encouragement the Lord had provided just for her.  She closed with the Scripture reading at the bottom of the page and looked at me. "Isn't God good?" she demanded, as though daring me to state otherwise.

Not waiting for an answer she looked back at her devotional.  "Now I will sing the hymn that goes with this reading," she said.  Tears ran down my face as I listened to my mother warble Just as I Am, and my heart warmed with the Holy Spirit's presence.

During the early years of Mom's Alzheimer's, my heart ached from her rejection of the Lord in me.  She thwarted my attempts to help and said things that hurt my heart. I forgave her but I didn't think she would ever accept the blessing God had offered her through the anointing He gave me on her behalf. I couldn't see the use of having spent so much time in fervent prayer for my mom when those prayers seemed to have no impact on the course of her disease or her heart toward me.

But tonight it was as though God whispered to my heart, "You see? I heard your every prayer."

So often, the Lord asks us to trust in Him when we can't see where our paths will lead. When a loved one is diagnosed with Alzheimer's there is so much fear and uncertainty, but I am here to tell you that it is safe to place your trust in our God. At the time of Mom's diagnosis I never would have dreamed that the love and prayers I offered on her behalf then would bear fruit for her ten years in the future; I didn't think Mom would survive that long, much less still be able to think clearly enough to sing and to pray.

But God knew.  He always knows.  Blessed be His Name! 

For the remainder of the month of November and throughout December, my mother's devotional, Beautiful In Each Season, has been reduced to the lowest prices allowed by Kindle and Createspace, both eBook and hard copy formats.  This is a wonderful time to supply copies of a large print devotional to shut-ins, nursing home residents, and care recipients.