Transitions

When I was writing My Mom Has Alzheimer's, I prayed almost constantly for guidance.  I worked hard to accurately record messages of comfort and help as I transitioned into the role of being my mother's caregiver.  Now, seven years later, I am facing the major life change of moving into early retirement after a career of teaching.  For the first time in over twenty years, August of this year will find me at home rather than at the school preparing frantically for the imminent arrival of a group of six-year-olds who need to learn to read.  Additionally, my son and his lovely fiancee have planned a July wedding.  Faced with this dual challenge to my emotional equilibrium, I've been revisitng the truths God has given me about making successful life transitions. 

As my son prepares to embark upon his new life, I remember my feelings when his older sister left for college: 

"I came to recognize that if my daughter had difficulties beyond how to cook a pot roast or what cleaner to use on the bathtub, that I was no longer the key designed for that particular lock. She had outgrown me. All mentor/child relationships are temporary—the child grows up. The fact that my daughter no longer required me for sustenance was not a reason for grief, but rather, an indication that I had done my job well. Because of my close emotional tie to her, this was also a gift and a blessing. I was free of my responsibility for her; free to enjoy her" (My Mom Has Alzheimer's: Inspiration and Help for Caregivers, p. 27). 

I wrote the following quote in reference to my changing relationship with Mom, but it holds true for the change I am facing in my relationship with my son as he honors the commitment he has made to his beloved wife-to-be:

 "It is a difficult transition, made easier by the recognition that although the rules of the relationship change, love remains" (introduction, p.xiv). 

And finally, a reminder of the fact that change is a normal part of life:  

"Life is full of transitions, and most of us don’t like this fact. We would prefer to attain a place of comfort and safety and clutch it to our hearts to keep, but we are not allowed to do so. Just as ocean tides ebb and flow, our lives are always in motion" (p.28). 

 Nothing unusual is happening to me.  Children grow up and get married, people retire, and loved ones get Alzheimer's disease.   However, I learned awhile back that simply because many people undergo the same sort of sorrows, that this does not diminish the caliber of compassion our Heavenly Father holds for any beloved one of us.  I know the Lord weeps with me, but I also know He has promised me a future and a hope.  It will be interesting to see what the future holds as I prepare to turn the next page in my life's story. 


Insight:  Anchor your heart to the Lord. Although everything around you may be in a state of upheaval, God does not change.


Scripture:  "I, the Lord, do not change" (Malachi 3:6)." 

Not What I Had in Mind

When my mother was diagnosed with Alzheimer's disease almost exactly seven years ago, my first response was an overwhelming sense of empathetic love for her.  I spent a lot of time researching the latest treatments for dementia.  I gladly adjusted my schedule to accommodate her escalating need for my presence.  I treated her with teary-eyed solicitousness.  No need of hers was too inconsequential to warrant my attention and concern.  I gave no thought for myself. 


That was a
very
        long
                 time
                          ago.


We are told that Alzheimer's is a terminal disease and also that it is a long goodbye. As caregivers, we don't fully understand either of those concepts when we are at the beginning of our journey through Alzheimer's. The shock of the diagnosis itself along with  forced acceptance of the fact that a loved one is going to require escalating levels of care is overwhelming.  However, once the ho hum day-to-day routine of taking care of the loved one is established, it is inevitable that at some point a thought such as the following occurs: 


"This is not what I had in mind!" 


As a Christian I've tried to squelch such thoughts.  Although taking care of my mother for seven years and counting is certainly not what I'd have planned for myself, it is obviously the Lord's will for me.  There came a point at which I had to choose to give up my ineffective faunching at the bit of my circumstances. This was not an entirely selfless decision; I was uncomfortable, and I was making those around me uncomfortable.  There is peace in submission, not to the circumstances themselves, but to the Lord who authored the circumstances.  Being able to trust that God is in control is far superior to waking up at 3:00 a.m., trembling with fear of what is going to happen during the next few years.


Unfortunately, this exchange of fear for trust has not been a one time transaction for me.  I am sorry to say that even when I am doing my best to abide in the Lord, I am prone to fear.  It's not for nothing that Isaiah 41:10 is my life verse:  "So do not fear for I am with you, do not be dismayed, for I am your God.  I will strengthen you and help you, I will uphold you with my righteous right hand." 


Another favorite is "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your path straight"  (Proverbs 3:5-6 NIV 2011). 


If, as a caregiver, you are sometimes overwhelmed by the thought that "This is not how I thought these years of my life would be spent," I pray you can find peace and comfort in the fact of the Lord's authorship of your caregiving journey.


 Scripture: "They submitted themselves...like Sarah, who obeyed...You are her daughters if you do what is right and do not give way to fear (italics mine)" 1 Peter 3:5b-7.

"Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me" (Philippians 3:12).  

Dark Thoughts

A lady from Germany reads my blog occasionally.  Through one of her comments on my posts, I followed her link back to her website.  It was written in German!  I noticed my name and the title of my blog within a string of otherwise incomprehensible-to-me words, and so I copied and pasted a portion of the text into one of those translator sites.  Not thinking I would ever read her words she'd written something like this, "Linda Born has helpful things to say about caregiving, if you can get past her conservative religious perspective."  


I had a laugh over this, but my next thought was a hope that if anyone who reads my words needs to get past my faith perspective in order to receive the help and encouragement I have to give, that they can do so.  Indeed, it is my prayer!  


That said, here is my word to you today; don't let shame over dark thoughts keep you from the sustaining, forgiving presence of the Lord.  It's not that He loves you despite the sin, but rather that He loves you enough to have provided an escape from the sin.  That way is forgiveness.  If we don't acknowledge the sinfulness of the negative feelings of resentment, anger, and even hatred, we instead justify those dark feelings by saying that the person who is the target of the dark thoughts deserves them.   An Alzheimer's patient is a victim.  The old adage "Do not blame the victim" comes to mind. 


I've had some very dark thoughts of late toward my mother.  Yes, I have in my heart of hearts wished for this trial of caregiving to be over.  Nearly seven years of my life have been given in service as a caregiver.  The emotional and spiritual burdens of the time have thus far outweighed the physical work of caring for Mom. I've read the experiences of other caregivers, and I am aware I could have it much much worse.  Although it has happened occasionally, I have not routinely had to change adult diapers or scrub bodily fluids from the floor or linens.  But, I do bathe my mother, provide all her meals, and carry out housekeeping chores for her.  She sometimes expresses gratitude, but just as often she is somewhat demanding.  My heart takes a daily beating.  I can't be gone overnight or even for an evening out without making special arrangements for her.  


I'm not always nice to her.  Although I know better than to try to reason with a dementia patient, sometimes the injustice of my situation overwhelms me and I try to explain to her why she can't have unlimited crackers and pretzels (she has a bad knee and is overweight), or that the fact that I forgot to change the date on her whiteboard doesn't mean that she is being mistreated.  Sometimes she acts as though she is in a luxury hotel and that the paid help is not providing the expected level of service.  At those times I feel like her servant rather than her daughter.  It is hard to be nice.  It is hard to be Godly.  It is especially difficult not to react to her negative behaviors with anger and a raised voice, and then later to suffer overwhelming guilt.  She is completely dependent on me for all her needs.  I am the one who carries all of the power in our relationship.  I determine what she eats and when, what she wears, and how much social interaction she will receive during a given day.  It is always a sin to misuse power one carries over someone else. 


But through all of this I have a deep knowledge that my negative feelings don't remove me from God's love for me.   By continually bringing my resentment, anger, and yes, my sin into God's light, I've been able to accept that while I am not perfect, God is yet able to minister through me to meet the needs of His beloved Anna Ruth.  I have been aware throughout this caregiving journey of how precious she is to the Lord.  This awareness of the incomprehensible value of my mother's life in God's eyes has been the motivating force behind my willingness to continue to provide her care beyond the length and breadth of human love.  And it is my confidence that He loves me with the same intensity that He loves my mother.  This assures me that He does not forget me.  He's asked this service of me, He has provided strength and resources, and He will see me through it. 


My dark thoughts are not acceptable, but they are forgiveable!  


So are yours.  


Scripture:  Though I walk in the midst of trouble, you will rescue me...the LORD will perfect that which concerns me"  (Psalm 138:7-8 NKJV). 

Sunday Morning Meditation

This morning I read Isaiah 49. The first few verses of this passage always make me smile, because my last name is "Born." And so when I read, "...before you were born, I called you," the words carry a double meaning for me. I'm always reminded that before I was Mrs. Born, even when I was just Linda, I was loved by the Lord. The same love of God that was with me from childhood carries me now. I am not lost in my roles of wife, mother, teacher, and caregiver; to Him I am loved uniquely and am specially chosen beyond any roles I fill.

For those of you who are feeling lost in your role as caregiver, I would encourage you this morning. The Lord's love for you is not bound to your service to others. He sees beyond your present station in life to the unique heart of you. To Him you are still the child you once were before the burdens you now carry became so heavy. The Lord sees your heartache, He understands, He weeps with you.

Caregiving is a temporary role that we will someday outgrow. Thank God for His strengthening and sustaining presence through all the times of our lives.

Scripture: "Before I was born the LORD called me; from my mother’s womb he has spoken my name... But I said, “I have labored in vain; I have spent my strength for nothing at all. Yet what is due me is in the LORD’s hand, and my reward is with my God” (Isaiah 49:1, 4).

For Lo the Winter is (almost) Past

I've suffered a virus this week, one of those aching, sneezing, feverish colds that depletes the available supply of Kleenex at an unbelievable rate.  Despite liberal use of germ gel and Clorox wipes, this morning my husband, John, woke up with unmistakable signs that he too had fallen victim to this virulent rhinovirus. 


"I've caught your cold," he accused. 


"It is not MY cold," I replied grouchily.  I was a victim.  Do not blame the victim!"


And so our morning went. 


After John left for work with a thermos of hot tea tucked under his arm, I came back upstairs thinking I would rest awhile longer.  I paused at the doorway of my bedroom and surveyed with distaste the crumpled wrappers from cough drops, wadded tissues, and rumpled bed linens.  I decided to purge the area of all germs, and as I began to clean I raised the window shades and looked outside.  After days of sub-zero windchills and too much snow, the temperature had reached a balmy 45 degrees. Letting go of a negative mindset is not easy, but as I gazed at the melting snow, I allowed myself to feel a hope of spring.  I looked at the propane tank that holds fuel for our house furnace, and just beyond it noticed the neat stack of firewood.  I thought about how inclined I am to focus on the storms life brings me rather than to thank God for the protection He provides from those storms.  Warmth, heat, and light were all ours in abundance throughout this bitter winter.


I turned from the window and came into my little upstairs office room, noticing signs of comfort all around.  The little electric heater that warms my feet as I word process...

And the afghan made by my cousin's wife as a Christmas gift about thirty years ago.  It has survived many washings intact, and is our go-to source of warmth when the bed doesn't have quite enough blankets.  We wander around the house looking for it, because it quite often gets carried to wherever someone wants to settle down to read or watch TV.  "Where's that afghan," John will ask, "You know, the one Carol made..."

After several weeks of grousing and complaining about my lot, today I'm willing to admit that God has been very good to us. Life brings its storms.  My mom's Alzheimer's disease is just one of the challenges we've faced over the past few years.  But when I focus on how God has seen us through, I feel hope.  Winter can't last forever, but while it lingers the Lord's comfort and provision will see us through. 


Scripture:  "You have been a refuge for the poor, a refuge for the needy in their distress, a shelter from the storm..." (Isaiah 25:4)

"For, lo, the winter is past, the rain is over and gone, the flowers appear on the earth; the time of the singing of birds is come..."  Song of Solomon 2:11-12, KJV

The Unnecessary Embarrassment of Dementia

This post is the most recent article  submitted to our community newspaper for my monthly caregiving column.  It is based on the January 19 blog post here at God, Mom, Alzheimer's, and Me; but I thought it worth re-posting because it contains a few additional points.  And, I have to admit that I spend more time editing the column than I do the typical blog post.  It is a bit more polished.  Hope you find some encouragement here today.  Blessings, Linda

Most of us remember feeling embarrassed by a parent during our teenage years.  One of the times it happened to me occurred the summer I was 13.  My best friend arrived at my house unannounced, and my father answered the door wearing what we used to call Bermuda shorts.  My excessive humiliation seems laughable now; how silly to be so embarrassed by the fact that my father had legs.  Even worse than the embarrassment itself was the horrific guilt over feeling ashamed of my father. 

When a loved one is stricken with Alzheimer's disease, there can be a similar sense of guilt-producing shame on the part of the caregiver.  Most caregivers attempt to "cover" for their loved ones who have dementia, and a few take it so far as to avoid an official diagnosis.  This can't go on indefinitely, because untreated Alzheimer's disease tends to progress in ways that become hard to hide.   

When dementia strikes, the patient may no longer respond appropriately in social situations because behavior characteristics that might accurately be labeled “sinful” can no longer be hidden.  Since there are no perfect people, this is a universal problem.    

I love my mother fiercely and protectively.  I remember her as she was pre-dementia, when she was my closest confidante, my number one admirer, and the person who could be depended upon to pray for me any hour of the day or night.  When I look in the mirror I am blessed to see a strong resemblance to my mother. I love her so much that when she is gone from me, the ways that I resemble her physically will be a comfort to me; a way that she will remain with me for all of my life.  I am determinedly glad for all the ways I am like my mother. 

Occasionally, someone will respond to Mom’s dementia related behaviors with disapproval or misplaced humor.  When this happens I always wish I could stage a showing of a home movie of my mother as she was 25 years ago.  The person who responded negatively to her would be forced to admit that my mother was admirable back then, and that behind the facade of dementia and old age, she is admirable still.

I guard my mother carefully and sometimes keep her separated from social interactions in order to protect her.  However, just as I once felt humiliation over my father’s choice of summer attire, I now sometimes experience a sense of unnecessary shame concerning my mother.  There are times when it is good and right for me to shield my mother from situations that I know might trigger a negative response, but at other times, I am guilty of being overprotective.  My hope for myself and for other caregivers is that we can release the sense of misplaced responsibility that causes us to attempt to control how our care recipients are perceived by others.  There is nothing shameful about being afflicted with Alzheimer’s disease. 

Right Where I'm Supposed to Be

When I first began taking care of my mom, I remember struggling against a restlessness that made me feel that caregiving was robbing time from other responsibilities. At first I saw providing care to Mom as an interruption in my life's plan, rather than a holy purpose assigned to me by God. I came to understand that the Lord desired me to have the same kind of commitment to caregiving as I had experienced in my dedication to teaching children to read during my career as a teacher.

I've since learned that it is a mistake to define myself by the job assignments I am given. Back then I thought of myself so strongly in terms of my identity as a teacher that it was difficult for me to cut my job to half time in order to assume the new role of caregiver. And now, as I prepare to retire from my teaching career a few years early, this message has been reiterated to me again and again:  I am never to think of myself as being defined by the job I do, but rather in terms of the relationship I have; I am a child of God.

Flexibility is not and has not ever been my strong point. The transition to the role of caregiver was difficult for me just as letting go of my teaching career is hard for me now. I tend to resist new roles until the Lord sort of knocks me upside the head and says, "I am in this! Stop resisting! Blessings are in store!!!"

One of my newer roles is that of grandmother. I love my grandson dearly, long for him when I don't see him for more than a few days; and delight in him when he is with me. However, I'm ashamed to admit that I do not enjoy babysitting. Tending to the needs of a toddler always elicits in me that restless feeling described above, as though I am not doing what I'm supposed to do.

Yesterday my husband and daughter went on a grocery shopping expedition together, and I was left behind, taking care of not quite three-year-old Daniel. We were having a wonderful time, but beneath my enjoyment of this precious child lurked the the oppressive weight of all of my other responsibilities.  That restless, ever-present voice in my head whispered that I ought to be accomplishing something else.  


I'd pulled out an old teaching unit and found a folder full of colorful, laminated photos of different kinds of birds. As I pulled each photo from the folder, Daniel named them. I was laughing in delight at the fact that he knew "flamingo," when three die cut letters fell from the folder. 


"Probably a caption from an old bulletin board," I thought. I looked through the folder to get a clue as to what the caption might have been, but found no more letters.

"D," said Daniel, picking up one of the letters.

"D is for Daniel!" I smiled, once again amazed at my grandson's knowledge.

And then I picked up the other two letters. Slowly, and with the strong feeling that the Holy Spirit wanted me to pay attention, I set them out.

"S for Scott," I said. Daniel's middle name is Scott.

With goosebumps, I put the final letter in place. "Here is an R for your last name, Daniel."

Sure enough, my grandson's initials, DSR, lay before us. There were no other letters in the folder or in the box from which they came. I have no idea why those three letters were placed in the folder initially, because that file hadn't been opened for at least ten years. I know the Lord was telling me there will be opportunities still to use the materials and experience I've gained over the past thirty years as a teacher.  Most of all, I understood that yesterday afternoon as I sorted pictures of birds with my precious grandson,  I was right where I was supposed to be.

As human beings we long so much to attain a place of security and to remain there. When we draw feelings of self-esteem from any source but the Lord, we will be disappointed. In this life there is no consistency apart from Him. I continue to learn that I am secure only when I find my identity in the Lord. 

Scripture: "I, the Lord, do not change..." Malachi 3:6.