The Heartaches of a Spenddown

Right now Mom's room doesn't seem right without Mom in it, but in years to come the laughter of her great-grandchildren will fill the empty spaces as we host family gatherings here.  The church pew to the right is from the church where my parents were married in 1946. Memories old and new, memories yet to be made!   

During the years my mother lived with us, her monthly income was nearly adequate to provide for her needs, and so she still had a small but comfortable sum in reserve when she entered nursing home care. This we began "spending down" in anticipation of an eventual need to apply for Medicaid.

When you don't have a whole lot to start with, it doesn't take very long to spend it down at the rate of about six thousand dollars a month for nursing home care, doctor visits, and prescription drugs. The dreaded Medicaid application process looms before us, and although my head tells me everything will work out, my heart tells me differently.

When we are in the process of losing someone we love, the material blessings they leave behind gain emotional value. For example, I am writing this post while seated in a comfortable chair in the spacious addition to our home that my Dad's careful saving made possible for Mom. She spent twelve years in this warmly lit, lovely space, was happy here, and we were happy to have her. My dad would have been so pleased.

He was brave, my dad. At age 50 he knew he had not saved enough money to keep my mom secure, should anything happen to him.  He went to back to school for the better part of two years and became a Federal Meat Inspector. The savings he accrued in the final 15 years of his working life helped provide a secure, handicapped accessible place for Mom when she was diagnosed with Alzheimer's. I will have this space as a testament to the beautiful way God provided for my mom through my dad.

A spenddown, however, is the opposite of comforting.  Mom is now paying other people approximately five times the monthly amount she paid me as per the care agreement* our attorney drafted when she decided to live with us. Again the heart/head disconnect; this feels unfair, but my brain works well enough to understand the costs of providing 24 hour a day care in a facility. There are eight or ten aides on each of three shifts at the nursing home, and this doesn't include the charge nurse, administrator, or cooking staff.  The amount we pay for care at this small nursing home in a rural community begins to look like a bargain...when I use my head, that is.

My heart sees it differently. It feels as though my mother's remaining financial assets are evaporating into thin air.  She is receiving services for her payments, but, probably because I was her primary caregiver for so long, I feel usurped.

It's important to recognize these emotions and to allow my Christ-directed mind to take precedence over my emotion-driven heart. Otherwise, some strange behaviors can erupt, because emotions can't be kept in a box.  They will escape their confines and influence seemingly unrelated situations so that we act, in a word, weird. The past few months I have been at best, stingy, and at worst, irrational regarding matters of money, and it is because I've confused losing an earthly inheritance with the loss of my mother. The one can be released without regret, but the other is an eternal connection through Christ.  I don't have to mourn my mother's slow passing away as though I had no hope of seeing her again when we are resurrected in Christ. Our relationship will evolve but it won't disappear.

Meantime, I'm going to do my best not to act weird about money.  It'll be a challenge, but I think even in the face of a Medicaid spenddown, I can do it, because the Lord is my help.

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Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.  Matthew 6:19-21

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*If you consider becoming a primary caregiver for a loved one who is infirm, it is highly recommended to confer with an attorney who is an elder law expert. Membership in the National Academy of Elder Law Attorneys doesn't guarantee expertise, but it is a starting place to help you find someone who keeps up with Medicaid laws and is an advocate for those who have special needs and their loved ones. You can use their search tool to find an elder law attorney in your area.

P.S.  My blogger friend, Georgene, from over at Living On Less Money, asked why it is recommended to see an elder law attorney when one becomes a caregiver for a loved one who is infirm. Here are the reasons we spent several sessions with a local attorney who had worked for Medicaid and was on the board of a local nursing home:  1) I needed Durable Power of Attorney for health care and financial needs for Mom.  This is a legal document that, as far as I know, needs to be drafted by an attorney.  2)  Mom was adamant that she would pay me a salary, but we worried that anything she paid me would have to be paid back in a Medicaid recapture of funds. The attorney assured us that if both parties desire a care agreement (she called it an in-advance contract) that this is acceptable to Medicaid.  That contract was very specific as to the services that would be provided Mom (right down to washing her windows at least twice a year!!), and was written to protect her rights.  The salary she paid me was small, but helped defer the financial loss I incurred when I quit my teaching job to care for Mom.  3)  Mom wanted to create a living will.  She does not want to be put on life support.  We needed the attorney to create that document.   4)  Mom wanted to set aside monies for funeral expenses, which are safe from a Medicaid spenddown, and had no idea how to go about this. She ended up purchasing a prepaid burial plan, but this isn't always recommended because if a funeral home goes out of business, the investment could be lost. We needed the attorney's advice on how Mom could safely set aside money for these expenses.

When we were in transition into the role of caregiver and patient, our emotions were running high and we weren't necessarily thinking clearly.  We had many decisions to make with Mom shortly after her Alzheimer's diagnosis.  Building a mother-in-law addition was the most monumental of these, and our attorney led us through this process in a way that blessed Mom and protected her rights as well as ours.  The attorney's suggestions were invaluable.  I don't know whether we would have had courage to move forward with the addition without our attorney's guidance, but it proved to be a wonderful blessing for my mother.  No one (but the Lord) could have anticipated that she would spend twelve happy and peaceful years with the security of having us next door whenever she had a need.

Hope this clarifies the reasons I recommend the guidance of a competent attorney who has an interest in elder law.

A Difficult Passage

I am grateful to the Lord for His gentle guidance as I navigate the release of my mother into His hands. Mother/daughter relationships are multi-faceted, and as my mother's only child, every layer of connection between us has been emotion-filled and sometimes, tangled.

Our twelve-year-and-counting journey through Mom's Alzheimer's involved a role reversal so that she essentially became my child. But the other connections remained viable, like electrical pathways that still conduct power even though there are no longer receptacles at the end of the lines. Mom could no longer "mother" me, but she was still my mother. I still had my mother, but grieved the loss of relationship with the mom she once was. We have traveled a complicated, messy, sin-on-both-sides journey together, but the pathway has been lit by God's grace.  

A paraphrase of Psalm 23 has been my theme: "Yea though I walk through the valley of my mother's Alzheimer's, I shall fear no evil, for thou art with me..."  

The Lord has been with us.  

I did not want Mom to go to a nursing home, but I am finally seeing God's wisdom and love behind this unwanted event. It has been my lifelong job to support and help my mother, but she has embarked on a final journey that she must travel alone; I can't die with her. In His kindness and love for both of us, Mom has been provided multiple, competent caregivers who will tend her many needs on this last leg of her life journey. I have been allotted a gentle time of weaning from the heavy burden of responsibility I've always felt toward my mom--even before her Alzheimer's--as her only beloved daughter.  I have always worked hard to make things right for her.  That this separation is occurring before she enters into the Lord's rest is also a blessing; it allows me time to set my face toward a future that will not include either the burdens or joys of my mother's presence in my life.  

We need to pray more for our loved ones who are in nursing homes, even as we do the heartrending work of separating ourselves from the day to day facts of responsibility for their physical and emotional needs. Finding a balance between bringing Mom's needs before the Lord in prayer and yet releasing those needs to Him is an ongoing challenge. 

Whenever I begin to suffer panicked heartbreak over the overwhelming pathos of Mom's suffering, I have learned to suspect that I've listened to the enemy's whispers. God has been with Mom just as He has been with me.  She needs my love and prayers, yes, but an overwhelming emotion of pity is unwarranted, and beyond that, it cripples. The intensity of such an emotion can't be sustained and would result in my withdrawing from Mom, which would be too bad, because I'm convinced that the Lord has blessing for us still, here on this final stretch of our Earth-walk together.

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 Then the Lord said to me, “You have made your way around this hill country long enough...

The Lord your God has blessed you in all the work of your hands. 

He has watched over your journey through this vast wilderness. 

These forty years the Lord your God has been with you, 

and you have not lacked anything.

Deuteronomy 2:3, 7

What I Didn't Know....

I want to share some things I wish I'd known before we placed Mom into nursing home care back in August.  To avoid a book length entry, I won't share everything I didn't know--just a few key points. Here's what I wish someone had told me:

1.  Don't look upon the nursing home placement as being the end of your caregiving journey, instead, think of it as the beginning of a new phase of caregiving. Transitions are difficult, and there will be challenges.  

2.   For a time, your loved one will need you more than before.  This is temporary, but the time commitment needs to be accepted and not viewed as something unusual. The nursing home administrator told me that the average time  for patients and families to adjust to their "new normal" is three to six months.

3.  You'll need to be a patient advocate in the same way that hospital patients need someone who knows them well to serve as a liaison between doctors, staff, and patient. There will be miscommunications, there will be upsets, and there will be a learning curve for those providing care for your patient.  Be kind, be patient, and be present.  

4.  Show up at different times of day. If possible, eat  a meal in the home's dining room with your patient once or twice a week.  Observe your loved one's reactions to various situations, and don't be afraid to make suggestions.  

5.  Recognize that the challenges of this transition are temporary, and that you and your loved one are headed toward a more comfortable time.  

6.  Couch any concerns in encouraging comments about positive things you've noticed. 

7.  As a caregiver, allow yourself to grieve. My emotions upon driving away from the nursing home after we'd settled Mom in her room that first day were remarkably similar to how I felt when we left our kids at their college dorms. Don't let people tell you that you shouldn't feel sorrow. Honor your years of service to your loved one, be much in prayer, and inquire of the Lord about how to release your loved one into the care of others (more about this next post).   

My mother has been in the nursing home four months now, and the stresses of those first difficult days are beginning to ease for us. Although Mom is in the late/middle (or early end) stage of Alzheimer's, she has adapted to her new environment and is no longer calling my name every few minutes as she did at first. The staff has gotten to know her, and I now feel comfortable missing a day or two of visits as necessary.

Here's lovely song by Matthew West entitled Only Grace that describes the emotions of this new phase of my life as a caregiver. Give it a listen if you have time--I hope it ministers to you as it has to me.

Note--the Youtube ads that precede the video range from annoying to mildly offensive. Just click "skip ad..."  

  

Dangers of Food Aspiration in Elderly Dementia Patients

I want to pass on a word of warning from my blogger-world friend, Jennie, whose sweet Alzheimer's  mom recently entered into the Lord's rest. Jennie knows that my mother is in a nursing home, and wrote a thoughtful email encouraging me to monitor Mom's mealtime habits as her Alzheimer's progresses. Here, with Jennie's permission, is her quote about the care that needs to be taken with elderly dementia patients to help them avoid aspirating food: 

I don't think people understand (I didn't) how often oldsters succumb to pneumonia due to aspiration of food. Some people even privately hire people to come feed their loved ones at meal times. The aides are hassled and overworked, and just don't take the time to be sure the person has thoroughly chewed and swallowed before they put the next forkful or spoonful up to the mouth. People often also don't understand that one of the features of Alzheimer's is that the brain forgets NOT just memories and other cognitive things but forgets how to walk, how to chew, how to swallow. I think there needs to be more awareness of this and if there is a way for me to get this out there I want to do it.

 Jennie also mentioned an interesting study that has been done on the efficacy of soliciting volunteers to help elderly patients at mealtime in order to prevent choking, food aspiration, and nutritional deficits when patients become unable to feed themselves.  You can find that study here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3813467/.

Thank you Jennie, for taking time to help others during this difficult time of grief.  Our prayers are with you. 

Jealousy Blinds Us to Blessings

I took care of my mother in my home for 12 years following her diagnosis with Alzheimer's.  My one, repeated prayer during that time was "Please don't make me put Mom into a nursing home." I'd been horrified at my beloved grandmother's rest home experience, and felt that all my sacrifices on Mom's behalf would be worthwhile if only I could avoid enduring the agony of watching her go through a similar trial. But in the fall of this year, Mom's needs increased just at the time I was facing numerous small but strength-draining health challenges. I became physically unable to meet her needs and was forced to do what I felt I'd paid my dues against; we placed Mom into nursing home care.

As I watched Mom struggle to adapt to her new schedule, I suppressed resentful thoughts toward the Lord. I kept up a cursory morning devotion time but stopped praising or reading very much Scripture at all. However, resentment can't be repressed for very long; it is like bacteria that grows exponentially and causes infection. I began expressing anger toward my husband over inconsequential things. The past, no longer bathed in the clean light of the faith that had led me to the decisions I'd made, became darkened  by a vision-clouding haze of resentment that tainted every thought and memory. Years after the fact, I became angry that I'd  quit my job to take care of my mother as others kept right on building fat retirement accounts. I no longer thanked God daily for the many, often miraculous ways He has met my needs. 

We don't recognize jealousy for what it is; we think it is as simple as wishing that we possessed something that belongs to another. But true covetousness, the kind forbidden to God's people by the tenth commandment, is a deeper and more perception-bending sin than a mere, oftentimes fleeting desire that our possessions were as nice as those of our neighbors. It is when we withhold compassion and empathy from those who need it--justifying our hard-heartedness because they are more blessed than we--that covetousness becomes commandment breaking, God-displeasing sin. I coveted the lives of other people that I viewed as having had easier paths than my own. I dreaded my daily trips to the nursing home, and my appointed ministries not just to Mom, but to other residents there. In her classic book, The Christian's Secret of a Happy Life, Hannah Whitall Smith describes this resentful, covetous state of mind: "I felt as if any kind of manual labor would have been easier, and I would have preferred, infinitely, scrubbing all day on my hands and knees, to being compelled to go through the treadmill of my daily Christian work. I envied...the servants in the kitchen, and the women at the wash-tubs.”

Sometimes, before we can be truly thankful for our blessings, we have to repent of sin. My sin has been a bitter envy of other people's easier-looking lives; Lord forgive me. I haven't given God the praise that is His due even though I've been aware of His gracious provision for me through this hard time (for example, on a recent drive to the nursing home I plowed into a deer at 55 mph, with no damage to me, little damage to the car, and even the deer seemed ok). I have been like a child who eats a meal her parent has prepared, but complains that the food is not presented on her favorite plate.

Repenting of this jealousy and anger I've been carrying around is such a relief.  My vision has cleared and I am able to praise my Lord without reservation this morning.  Blessed be His Name!

When my heart was grieved
    and my spirit embittered,
I was senseless and ignorant;
    I was a brute beast before you.

Yet I am always with you;
    you hold me by my right hand.
You guide me with your counsel,
    and afterward you will take me into glory.

Whom have I in heaven but you?
    And earth has nothing I desire besides you.
My flesh and my heart may fail,
    but God is the strength of my heart
    and my portion forever.

Psalm 73:21-26
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In an amazing postscript, this afternoon when I visited Mom she was unusually, amazingly lucid. Much of the time, she is unaware that she is in a nursing home, but tonight she said, "You know, all my life I tried not to dread the possibility of being placed in a nursing home, but I did dread it anyway.  But this is so comfortable!  I am content, and grateful."  She was actually looking at me, with good eye contact, and so I snapped her photo and didn't realize until I got home and reviewed the photos I'd taken that a beam of light was falling on her, as though the Lord was showing me that He is with her, and she is under His protection, and that this is the way He is answering my long years of prayers that we could avoid nursing home care for Mom.  I have been relieved of the heavy burden of her daily care, and Mom is content.  I couldn't receive this blessing until I released my idea of how things ought to be, and repented of my vindictive jealousy toward people who don't have to deal with Alzheimer's disease. Mom's nursing home experience has been nothing like my grandmother's. God has taken such good care of us, and I'm grateful.  

Not Only Survive, but Thrive

One of my current blessings: my daily trip to the nursing home offers beauty that nurtures my spirit. This has been an autumn of unusual, gold and green color, especially in the late afternoon when  I'm driving home after a visit with Mom.     

My high school home economics teacher taught us that whole cow's milk is such a complete food that one can live on milk, and milk alone.  "We can not only survive, but thrive on this food that offers everything our bodies need," she said. Although modern knowledge of nutrition would argue with her assertion, the phrase, "...not only survive, but thrive..." has stuck in my head over the years.

This morning, after my visit to the nursing home, I thought of how God's provision to us during adversity could be likened to what we once believed about the merits of milk; during hard times we can not only survive, but thrive because of His love.  Scripture says it like this: "You intended to harm me, but God intended it for good to accomplish what is now being done..."  (Genesis 50:19). This is from the account of Joseph, who suffered greatly at his brothers' hands, but was used by God to save his people from famine.

There is comfort to be found if we will look for God's hand even in things that break our hearts. It isn't that circumstances are magically made easy by this practice; I have encountered real difficulties during Mom's transition to nursing home care. However, I've also been provided the strength I need to meet those challenges along with some unanticipated blessings. For example, I've lost a good measure of my fear of nursing homes as I've spent time in the one that provides care for my Mom, and I've made some friends of several of the elderly patients I've met there.  I didn't know how much I missed being the youngest person in a room!  Their sweet smiles, kind gestures, and even their aged, gravelly voices have ministered to my heart in ways I didn't know I needed.

Now, I don't believe God has caused the hardship of Mom's Alzheimer's just to bring about these blessings.  But I have learned that if we look for His provision in the middle of difficult times, we will find what we need not only to survive, but to thrive.

Joy Comes!

A few years ago, I attended a tractor pull during our little town's Fourth of July celebration. The tractors competed to pull a weight transfer sled, and the winner was the one that traveled the longest distance before grinding to a halt. Three months ago when I became unable to provide care for my mom,  I felt like one of those tractors that had become unable to pull a steadily increasing weight.

Placing Mom into nursing home care has only signaled a new phase of this 12-year-and-counting "pull." Don't misunderstand; we have been constantly aware of the Lord's provision for us throughout the challenges we've faced. There has been grief, but there has also been sustenance in the midst of the sadness; we have had oases of peace and laughter.

There have been multiple touch points of grace; incidents that have illustrated God's promise that there will be a season of peace and freedom from sorrow, even before that final going home we as Christians are promised.  One of these occurred at the beginning of my time of caregiving when our elder law attorney spoke words I've not forgotten:  "Linda, there will be life for you after your mother's Alzheimer's." This statement hit my heart with Holy Spirit fueled truth, and I received it as a promise from the Lord.

Yesterday I returned home from a truly awful session at the nursing home that had to do with some neglected caregiving issues and miscommunications. By the time I reached home I felt battered and worn.  I had nearly forgotten that my adult son had asked if the wives and young children of his 3 closest friends could "hang out" at our house while the men did some skeet shooting on the hill above our house. I had gladly agreed; I love having these wonderful young people in our home.

When I opened my front door, the first thing I saw was a beautiful 13 month old baby boy toddling across the carpet. He stopped and gazed at me with wondering eyes.  A four-month-old was laying on a blanket having "tummy time," and my own precious 11 month old granddaughter toddled from her mother's arms to mine.  She blew kisses, wrinkled her nose, stuck out her tongue, then obligingly tilted her bowed head toward me for Grammy's customary "kiss on the head."  Finally, three little boys ranging in ages from 2 to 3 came tearing around the corner brandishing light sabers. It would have taken a deeper depression than the one I was harboring to have resisted such a greeting. My mood lightened.

I am grateful for these years of caregiving. I've learned so much of God's faithfulness through trials, and it is a testimony to His virtuosity that the very things Satan designs to destroy us become stepping stones to blessing. But I am also grateful for promised joy when sorrows come to an end.

...weeping may endure for a night, but joy cometh in the morning.

Psalm 30:5 KJV

I remain confident of this:
    I will see the goodness of the Lord
    in the land of the living.

Psalm 27:13 NIV

When Heaven Touches Earth

Anna Ruth and her great granddaughter, Rebekah Ruth

This is a sad time but there are joys interwoven amidst the grief I am feeling.

The photo above touched my heart deeply not only because both people in the picture are precious to my heart, but also because it reminded me of a series of little miracles the Lord has done for us in the past couple of years, miracles I had actually, if not forgotten, dismissed in some way so that they had lost their power to encourage.

I think it is important to recognize small coincidences as being God's way of touching our earthbound timelines with a little bit of Heavenly light, and that we ought to treasure these small miracles in our hearts, tucked away as protection from the discouragement sorrows can bring.  Our memories of how the Lord has blessed us in the past build faith that He will continue to bless us in the future.

I have shared this story before, but as I've received new understandings of the depth of the Lord's love through these seeming coincidences, I want to share it again!

Our little miracles arrived in this way: About 18 months ago both our daughter and our daughter-in-law announced their pregnancies.  Our grandson and granddaughter were born in the fall of 2015, one month to the day apart. Independently of one another, these two couples chose Biblical names for their children.  My daughter awoke with the word, "mirth," in her mind one morning and after thoroughly researching boy names that might mean mirth or laughter, she settled on the name Isaac.

Our daughter-in-law wanted her daughter named in remembrance of a beloved aunt who spelled her name Rebekah, like Isaac's wife in the Bible story.  And so our family welcomed Isaac and Rebekah, and we smiled at the coincidence, and we felt the Lord smiling with us.

But the little miracles didn't stop there.  Again, without consulting one another or me, my children decided to give Rebekah my mother's middle name, while Isaac received my father's middle name. Imagine the fullness in my heart when, in the midst of my grief over losing my mom and the always present sorrow of missing my dad, we welcomed little Isaac Lee and Rebekah Ruth.

I did not know myself, at the time, how I would feel to lose the last member of the older generation on my side of the family.  I will be the only one left when my mother passes away; there will be no remaining older relatives who share my maiden name and history. I have cousins, and cousins are great blessings, but it has been several years since I saw my closest cousin for a face-to-face visit.  I have no siblings. Having grandchildren who bear my parents' names means more to me than I first understood. My dad and mom have great grandchildren who will carry their names to a new generation, but more than that, my heart is comforted on levels that only the Lord knew I would need as I traverse my mother's transition to nursing home care and the rapidly approaching end of her journey through Alzheimer's.

Mom's Wallet

I've been cleaning Mom's apartment, preparing for its transformation from "Mom's room" to "family room." It is a bittersweet time as so many of you have experienced; sorting through old photos and possessions and making decisions about items to send to Goodwill is heartrending.

At the nursing home just recently. 

I opened Mom's top dresser drawer today and found her wallet.  When she came to live with us twelve years ago this month, I remember hesitating as I emptied her purse and billfold.  In a moment of wisdom that was surely from the Lord and not of me, I reassembled her wallet and included some money, her library card, a blood donor card, and other items that would not be missed if she threw them away or hid them.  I put the wallet in plain sight on her dresser, and whenever Mom asked if she had any money left, I was able to show her that familiar wallet.  Sometimes she wanted to hold it awhile, but usually she just handed it back to me, reassured.

It is important for dementia patients to retain as much of a sense of dignity and adulthood as possible.  Although Mom is past the need for such reassurance now, I am glad that as a fledgling caregiver I had the wits to preserve an appearance of independence for her during the time such things provided her comfort.

Mom has transitioned to nursing home care as well as can be expected. My heart tells me that we are traversing the final days of her journey through Alzheimer's. While I would much prefer to avoid this present sorrow, the sweetness of the Lord's presence and solace provides comfort that nourishes and strengthens.  Thank you for praying for us.

Imperfect Christians

Most of us spend a tremendous amount of energy constructing and maintaining our personae. I'm talking about outward appearances: lawns that are mown, cars that are washed, clothing and hairstyles that are, if not fashionable, at least clean and acceptable. We follow rules set down for us by the culture in which we live, and fall to self-condemnation when we begin to drown in the overwhelm of our impossibly ambitious lists of endeavors.

A depressing number of conditions can cause our carefully constructed veneers to erode. Sickness can do it; any determination to "be nice" quickly falls away when our bodies are in pain. If we've maintained our exteriors at the expense of our spirits, it's worse, because all the vexations that we've secretly harbored toward others--those things we've bypassed through strength of determination to appear kind or Christian--quickly boil to the surface. We lose the ability to contain irritation. Sickness, old age, or physical pain peel away an outward mask of good appearances.

There is a misconception that Christians ought to be exempt from such petty, human vices as irritability or venting of negative emotions, regardless of difficult circumstances. A few days ago, my mother was angry with her caregivers at the nursing home, and, utilizing the only effective weapon she has left, was criticizing every person who had the misfortune to have been assigned duties on her behalf. Mom is still able to use words as barbs, and her young caregivers received the hurt. One of them rolled her eyes heavenward and said, "And she's supposed to be so religious!" I was stung, because I could see the enemy at work, undermining the Lord's transforming power in my mother's life.

The idea Satan wants to put forth is this: "What's the good of a religion that doesn't make you nice?" This marginalizes the miracle of salvation; deliverance through Christ does not make us instantly nice; it makes us instantly saved. Through Jesus we are exempted from the terrible penalty we would otherwise suffer for all eternity because of sin that goes well beyond the parameters of being merely "not nice."  

We are a broken people. We are sinful, but when we accept the cleansing blood of Jesus Christ, we become children of God. From that moment forward (and perhaps, because of prevenient grace, even before) He begins to form and sculpt us according to His will. We aren't yet whole but we are being made whole. We aren't perfect but we are being perfected. One of the enemy’s strategies against us is to point out our remaining imperfections and say, “Oh my, how can that person say he is a Christian when he acts like that?”  It is no more appropriate to refer to a Christian's sins and say that because of them, that person is not a Christian, than it is to point to a partially melted ice cube on a sidewalk on a 99° day and say, "It's not water because there's still some remaining ice." Once we place ourselves in the path of God's healing light and love, his work begins. Sin that remains is melting away.

The enemy knows his time to condemn is limited. His only recourse is to point out the rapidly diminishing block of sin that remains and attempt to use it as evidence that no transformation has begun. I want to say to my mother's new caregivers, "Take a closer look. She sins with her words, but even in her current state--elderly, brain-damaged and nearly blind--the Holy Spirit is at work in her heart. The next time you go into her room she will say, "Thank you for all you do for me," or "I love you." And in her prayers she often says, fervently, "Lord help me speak and act as you want me to do. Forgive me when I don't."  

My mother isn't yet perfect but she is, even at age 92 and 12 years into her journey through Alzheimer's, still being perfected by the Holy Spirit's power within her. I pray for her caregivers understanding that evidence of remaining sin does not negate the work of God in her life. 

Remaining Sin is Evaporating Sin

Most of us spend a tremendous amount of energy constructing and maintaining our personae. I'm talking about outward appearances: lawns that are mown, cars that are washed, clothing and hairstyles that are, if not fashionable, at least clean and acceptable. We follow rules set down for us by the culture in which we live, and fall to self-condemnation when begin to drown in the "overwhelm" of our impossibly ambitious lists of endeavors designed to maintain our polished exteriors.

A depressing number of conditions can cause our carefully constructed veneers to erode. Sickness can do it; any determination to "be nice" quickly falls away when our bodies are in pain.  If we've maintained our exteriors at the expense of our spirits, it's worse, because all the vexations that we've secretly harbored toward others--those things we've bypassed by strength of determination to appear kind or Christian--quickly boil to the surface.  We lose the ability to contain our irritation. Sickness, old age, or physical pain peel away an outward mask of good appearances.

There is a misconception that Christians ought to be exempt from such petty, human vices as irritability or venting of negative emotions regardless of circumstances. A few days ago, my mother was angry with her caregivers at the nursing home, and, utilizing the only effective weapon she has left, was criticizing every person who had the misfortune to have been assigned duties on her behalf. Mom is still able to use words as barbs, and her young caregivers received the hurt. One of them rolled her eyes heavenward and, not realizing I could hear, said to her colleague, "And that woman is supposed to be so religious!" They both nodded in agreement. I was stung, because I could see the enemy at work, undermining the Lord's work in my mother's life.

The idea Satan wants to put forth is this: "What's the good of a religion that doesn't make you nice?" This marginalizes the great miracle of salvation through Christ; it does not make us instantly nice; it makes us instantly saved. Through Christ we are exempted from the terrible penalty that we would otherwise suffer for all eternity because of sin that goes well beyond the parameters of merely being "not nice."  

We are a broken people. We are sinful, but when we accept the cleansing blood of Jesus Christ, we become children of God. From that moment forward (and perhaps, because of prevenient grace, even before) He begins to form and sculpt us according to His will. We aren't yet whole but we are being made whole. We aren't perfect but we are being perfected. One of the enemy’s strategies against us is to point out our remaining imperfections and say, “Oh my, how can that person say he is a Christian when he acts like that?”   It is no more appropriate to point at a Christian's sins and say that because of them, that person is not a Christian, than it is to point to a partially melted ice cube on a sidewalk on a 99° day and say, it's not water because there's still some remaining ice. Once we place ourselves in the path of God's healing light and love, his work begins. Sin that remains that it is evaporating sin.

The enemy knows his time to condemn is limited. His only recourse is to point to the rapidly diminishing block of sin that remains and attempt to use it as evidence that no transformation has begun. I want to say to my mother's new caregivers, "Take a closer look. She sins with her words, but even in her current state--elderly, brain damaged and nearly blind--the Holy Spirit is at work in her heart. The next time you go into her room she will say, "Thank you for all you do for me," or "I love you." And in her prayers she often says, fervently, "Lord help me speak and act as you want me to do. Forgive me when I don't."  

My mother isn't yet perfect but she is, even at age 92 and 12 years into her journey through Alzheimer's, still being perfected by the Holy Spirit's power within her. I pray for her caregivers understanding that evidence of remaining sin does not negate the work of God in her life. 

Journeying Through Alzheimer's...

Feed My Sheep

And effortless way to bring a smile to nursing home residents' faces is to carry a baby down the hallway. This is my mom with her youngest grandson, Isaac.

I have been working hard to learn the names of the residents at my mother's nursing home without giving very much thought to why I feel inclined to do so. Spending time with these sweet souls isn't a natural tendency. There is an emotion akin to fear that would have me hurry straight to my mother's room, averting my eyes from the elderly patients who are seated in the half dozen overstuffed chairs and recliners that line the foyer. Left to my own, I would protect myself from their sad or hopeful gazes. Instead I've found myself grasping hands, asking names, and striking up little conversations.

And then, a few nights ago I woke up in the middle of the night with the words, "Feed my sheep," in my heart. And the mind picture that accompanied those words was of those elderly faces at the nursing home.

We tend to think of mission work as something that happens far away from home. We also have the idea that God always wants us to spend our efforts where the highest number of people will benefit. It is true that the fields are white with harvest and that the workers are few (John 4:35). But it is also true that we serve a Good Shepherd who cares very much about the needs of even one lost lamb.

We have to be careful that we follow the Lord's call to the field of His choosing. This almost always entails giving up the desire to please our fellow human beings. It's the workers who  build houses for the homeless or dig wells for needy people far away that are invited to speak at church functions; no one presents a slideshow of how they sang hymns with one elderly woman in a rural nursing home on a Saturday afternoon. We need the homebuilders and well diggers, but we also need to be certain that we don't choose more alluring fields of mission than the ones the Lord has assigned us.

I have received more than I have given to these precious folks They are so willing not only to be blessed but also to give a blessing. Yesterday I grasped the hand of a lady who was sitting in the hallway.  She was beautiful with her white hair and bright eyes and I told her so. One of the workers passed by and told me that this lady was 104 years old. I was astounded and turned back to her and said, "My goodness I hope I can do as well as you as I grow older."

She patted my hand, looked into my eyes, and said comfortingly,  "You will, you will." It might be a little silly but my heart received this as a blessing, and I left feeling uplifted.

This isn't the field I would have chosen for myself. I would like to be one of those energetic people who fly across the ocean to meet needs I would have judged to be greater. But this is where God has placed me, and I am blessed.

Earning Our Own Way Versus Receiving Acceptance by Grace

Consider how the wild flowers grow. They do not labor or spin. Yet I tell you, not even Solomon in all his splendor was dressed like one of these (Luke 12:27). 

Our Kansas sunflowers have blossomed into September-lit, golden profusion this year. It seems amazing that these blooms spring up apart from the plan of a landscape artist or the maintenance of a squadron of gardeners. No human effort is involved in making these wildflowers grow.

I always think I have to put forth a lot of effort if I am to blossom in a way that is satisfactory to the Lord and to my fellow human beings. Trying to do things right in my own strength as opposed to basking in the acceptance that is mine through Christ is an ongoing struggle. Since placing Mom into nursing home care, I've been aware that I need to rest before the Lord, but instead I have plunged into a new round of activities (will I never learn)? I started physical therapy for my back yesterday (a good thing) and was intent upon making that therapist think I am a Really Good Patient (not a good thing). I was lying on the floor concentrating hard on exercises for my transverse abdominals when the  following thoughts came into my mind with the Lord's gentle remonstrance:

Sometimes, we enter into a new relationship thinking, "Here is a chance for me to start over and to do things right so that I will be accepted and not rejected." This can be an innocuous relationship with a new physician, a physical therapist or a health counselor,  a nutritionist, or a weight loss group. And we have to be careful, because during this time when we feel that pleasing this person/people might be possible, without realizing it we give up partaking of the unmerited favor that is ours through Christ because we are working to gain favor of our own.

We get the idea that it is impossible to please God, and so we stop trying, and we turn our faces away from Him. The beauty of His grace, offered to us through Christ, is that we don't have to try. Grace covers us so that we don't have to deserve God's love, we have only to receive it as an unmerited gift. 

Having received unmerited favor, we then have a template of how to love others who don't deserve it. We offer them the grace that we have enjoyed through Christ. But ahead of that, we must have given up the effort to be acceptable in our own strength; we must have partaken of God's grace in order to offer it to others. 

When we are exacting with ourselves in the attempt to earn our own favor, we become exacting with others. Falling back into the grace that is ours through Christ will indeed lead us to the effort of obedience, but we will be released from the sure-to-be frustrated labor of attaining perfection through our own efforts. 

You foolish Galatians! Who has bewitched you? Before your very eyes Jesus Christ was clearly portrayed as crucified.  I would like to learn just one thing from you: Did you receive the Spirit by the works of the law, or by believing what you heard?  Are you so foolish? After beginning by means of the Spirit, are you now trying to finish by means of the flesh?

Galatians 3:1-3

Lens Effects and Reminders of God's Provision

So, I know that this is a lens distortion due to shooting a photo into the sun...but the Lord used it to remind me of His  presence with my precious daughter and grandchildren.

Sometimes, when the Lord wants to remind us of His abiding presence with us, He provides us a physical symbol of a spiritual reality. During dark times of my life I have been encouraged, not by rainbows and eagle sightings themselves, but by the reminders they serve of God's faithfulness. The Bible tells us God placed His bow in the sky as a promise (Genesis 9:13), and that if we wait upon the Lord we'll mount up on wings as eagles (Isaiah 40:31).

We get in trouble when we confuse a symbol with the reality itself. That's when we develop a hunger for stories about angelic presences and the afterlife. We risk an unwitting flirtation with the occult when we seek spiritual thrills rather than rest on the Bible's promises of truths yet unseen. If we are to mature in our Christian walk at all, we have to accept that God in His wisdom has chosen to be invisible, perhaps so that we are required as a result to walk by faith and not by sight. And yet He is so gracious. Sometimes He allows a tangible reassurance of His intimate involvement in every detail of our lives.

An ongoing grief in my life has been that I've not been able to be as supportive of my adult children as they need me to be. My daughter is a busy homeschooling Mom of three young boys, and her husband works long hours to support his family during these challenging, child-raising years. My son works long hours himself and is a housekeeping and child-rearing partner to my daughter-in-law, who is a compassionate, hard-working veterinarian. But for the past 12 years my responsibilities to my Alzheimer's mom, along with my own health glitches, have robbed me of the time and the physical strength that would have enabled me to be a more active and supportive presence in my children's lives. On good days I feel only a constant, guilt-tinged sorrow, and on bad days I have to struggle against a crushing sense of inadequacy that too easily flares to active, irrational, resentment toward God for making me the way I am and toward my kids for having needs I can't meet.

Yesterday we made a quick trip to visit our youngest granddaughter and her sweet mom (the vet). They live about an hour away, and on the way home we stopped to visit Mom at the nursing home. These activities, along with my rosacea--which keeps me from sitting in the sun watching kids' sports events as in days of yore--had kept me from riding along with my daughter to her oldest son's soccer practice as I'd like to have done. As we drove home from our visits, I had my husband stop the car along our country highway so I could take some photos.  I was standing in the middle of the road when a vehicle appeared at the crest of a hill about a mile away.  It was my daughter and her three boys, on the way to soccer practice!

They zoomed by, the boys shouting their greetings through windows hastily opened, "HI GRAMMY!"

My heart overbrimmed with love and regret that I wasn't able to be with them.

It wasn't until I got home and uploaded the days' photos that I saw those star-shaped bursts of light and received the reassurance that the Lord is present with my loved ones when I am not.  He is with my mother during long nights at the nursing home when I am no longer able to hear her if she calls my name. And He is with my precious children to preserve, protect and provide for their needs in ways I, not even on one of my best days, ever could.

We miss our loved ones when we are parted from them, but we don't need to add inadequacy-sparked feelings of guilt to the grief of separation. It is such a comfort to know that prayer is powerful, God's presence is abiding, and heart connections through the Holy Spirit can't be broken by time, distance, or even death.  God is so good. 

Surprised by Grief

Life transitions can be likened to a road that must be traveled. If we sit down at the side of the road in order to avoid the grief of changing views, we won't get anywhere!

I have been surprised by the grief I've had to traverse in the wake of placing my mom in nursing home care. So long as I was busy with caregiving I didn’t have time or energy to face the sorrow of the loss of my mother as she once was. Alzheimer’s had already taken my mother from me, but I still had the daily, broken solace of meeting her needs and demands of me. Our interactions had changed, but there was still a relationship: that of caregiver and patient. The nursing home placement brought this phase of my relationship with my mother to an end. It was an abrupt change similar to that of a death, and in the release from constant responsibility to meet her needs, I have been confronted with the cumulative pain of 12 years of watching my mother fade from sight. The monitor on my bedside table no longer channels my mother’s voice because her room is empty; there is only silence. 

It is difficult to come wholeheartedly to the Lord when we are in grief. This morning I remembered the chapter entitled “Facing the Grief,” in My Mom Has Alzheimer’s. I wrote of our human dislike of change, and of the difficulty of transitions in our relationships. I used as an example my emotions when my daughter married:

…for a time my daughter’s leave-taking left a terrible feeling of emptiness in my life. I clutched that emptiness to my heart and tried to rise above it on my own, because I had fallen to the deception that to come to the Lord would necessitate my facing the whole of my grief and pain. I had no desire to hurt more than I hurt already. I finally recognized the fallacy of the idea that God would require my heart to be ripped open and the contents emptied in order for me to gain access to Him. This lie was the enemy’s attempt to keep me from the solace that was rightfully mine in the Lord.

These days the lock my key fits perfectly is that of Alzheimer caregiver, but this role is also temporary. I pray that when my job as my mother’s caregiver comes to an end that I will bring my heavy burden of grief to the Lord quickly and willingly. He has promised that those who mourn shall be comforted, and I pray to avail myself of that comfort. My Mom Has Alzheimer’s: Inspiration and Help for Caregivers, Bridge-Logos Foundation, 2009, p. 28. 

 

The enemy offers us alternate sources of comfort that cannot satisfy when we are suffering from grief.  I’m praying today to “bring my heavy burden of grief to the Lord quickly and willingly.”  

Recommended hymn: Wonderful, Merciful Savior as sung by Selah

Transition to Nursing Home Care--Exhausting!

Today marks the beginning of Mom's fourth week in nursing home care. I am surprised by how difficult this transition has been; I thought the grief of parting would be balanced by the vast relief of liberation from being constantly on call. However, my time commitment to Mom's needs hasn't lessened during this transition time. The time I spend at the nursing home is balanced by a new freedom from the physical demands of caregiving, but another unwelcome surprise has been a sense of grief. Ministering to someone as I have ministered to my mother engenders a special kind of love.  We might say that it is impossible to give so much without caring deeply: thus the term "caregiver."  In my desperation to be freed of the burdens of caregiving, I underestimated how I would miss the blessings of giving so much. 

I was surprised by the steep learning curve of acclimating myself to Mom's new environment. As the person who knows my mother best, it has been my responsibility to learn how to communicate clearly with nursing home staff in an inoffensive way (though being inoffensive can't be my primary goal). I didn't know this would be so difficult. The hierarchy of authority among nursing home administration and staff wasn't immediately apparent to me (why didn't I just ask?). The administrators in the front offices were apparent, but there were bewildering numbers of aides, nurses, laundry workers, and kitchen attendants. And this is such a small nursing home; I can't imagine how much more challenging it would be to learn my way around a larger facility.

This morning's devotion time yielded a clear message for me: Rest! As I sank to the welcoming cushions of my old office couch awhile ago, I was reminded of how my mother--who in her prime moved quickly and worked hard--used to say, "Whew! I didn't know I was so tired until I sat down!"  Until I quieted myself before the Lord and sought His directive today, I had no idea how depleted I felt.

When we stay busy in order to distract attention from grief, we rob ourselves of the solace of silence and rest. The awareness of God's healing presence in His ordained gift of rest can be masked by too much noise and busy-ness.

  For God alone my soul waits in silence; from him comes my salvation.

Psalm 62:1 ESV

Truly my soul finds rest in God;
    my salvation comes from him.

Psalm 62:1 NIV

Here is a summary of today's recommendations for caregivers who are transitioning their loved ones to nursing home care: 

1)  Your time commitment to your loved one may temporarily increase during the first weeks of nursing home care.  Plan for this.  

2)  Your focus needs to be your loved one's well-being rather than an attempt to be inoffensive to nursing home staff--but try to be inoffensive just the same!  Maintaining a balance between being a good advocate for your loved one and not becoming a pain to his/her new caregivers requires much prayer.

3)  Don't run away from the grief this transition will bring, or fill your days with tasks that bury the Lord's offer of solace with a weight of busy-ness. Find your healing in His arms as you quiet yourself before Him.   

4) At the nursing home, ask this simple question, "Which person should I talk with when I have questions or input about caregiving issues?" I try to visit with the attendant who is charge of Mom's care before I take my concern to the nurse, and I visit with the nurse before I look for an administrator. This provides the opportunity for a problem to be corrected without triggering a correction or reprimand from a superior.

5) Larger nursing homes may have photos and names of staff on a website. This would facilitate learning names, which is important. You need to be able to greet these hard-working folks by name, it's just good manners, and respectful t'boot.  It also sends a clear message that you are committed to partnering in your loved one's care, and makes them feel pleased (that you remember them), but also aware that you know exactly who they are should you need to visit with them about a caregiving issue.  This is an important part of advocacy for your loved one. 

    6)  Be kind to these underpaid, compassionate people who perform the most difficult of tasks for so many people each day.  Nursing home workers face burnout as they form emotional connections with terminal patients. They will cry with you when your loved one passes away, and they will cry with the next patient's family, and the one after that.  Pray for them.

First Two Weeks of Nursing Home Care

Our pastor's wife sent this meme to encourage me the week we sent Mom to nursing home care. 

We have survived nearly two weeks of transitioning my mother to nursing home care.  

This has all been more difficult than I anticipated. Mom's room is empty for the first time in 12 years, and the house feels unfamiliar and silent. I have had to be stern against emotions that tell me I have abandoned her; the inaccurate emotion that attacks is  that of a mother who has abandoned her needy child. All of this, together with the inevitable challenges of helping Mom's new caregivers to understand her needs, has been overwhelming. I've had to spend more time at the nursing home than I would have predicted would be necessary. If I had not prayed through to peace regarding this decision ahead of time, I would have given way to emotions that told me we had made a terrible mistake.

I compiled a list of directives from myself, to myself during this time as I struggled to think clearly despite regular onslaughts of grief-driven emotion.  I've shared the list below, and hope others will be helped:

First Week of Nursing Home Care 

--Show up every day, at different times of day. If your loved one's hair is uncombed, comb it; if his/her clothing is mussed, straighten and freshen. If you have been the primary caregiver and have the skills to do so safely, toilet your loved one and check his/her cleanliness. 

--Don't apologize for your loved one's behaviors. Acknowledge the caregiving challenges, but don't make it seem as though you endorse shortcuts or omissions in caregiving practices just because your loved one protests or is difficult. As my cousin-the-social-worker said, "Don't put this on your mom, Linda. They are the professionals. She is the one who has sustained brain damage from Alzheimer's. They deal with things like this on a daily basis."

--If you notice some serious lapses in caregiving, don't respond with anger or righteous indignation.  The staff is learning to know your loved one's needs and capabilities. Be patient and kind, but also be persistent.  Pray, and don't leave until you feel confident the issue has been addressed. 

--Make an attempt to learn the names of every person who provides care to your loved one. Visit with the night staff.  Make it a point to meet everyone who interacts with your loved one.   

--While you are at it, learn the names of residents and greet them warmly as you walk down the hallway or stop by the fellowship room. This takes next to no time and your acknowledgment brightens their days.

--Be open about your grieving process in releasing your loved one to the care of others, but balance this with supportive words and actions toward the nursing home administration and staff (a thank you note and home-baked treats are always appreciated).  

--Pray for wisdom about which issues are important. It isn't necessary that my mother's new caregivers comb Mom's hair in the same style that I did, but it is important that they don't ask her to sit upright for long periods because she has a compression fracture in her spine from osteoporosis.

--If your loved one has a personality change, or exhibits behaviors you've not seen before, get to the bottom of the issue. Check to be certain there have been no errors in administration of medication. 

--There are two errors to make in advocating for your loved one: the first is to be too willing to give in when you sense something is wrong, the second is to jut your jaw and determine to examine every caregiving procedure to be certain they meet your specifications. Strive for a happy medium. Better yet, pray for wisdom. 

Chocolate and Sympathy...Maybe Just Chocolate!

We placed my mother in nursing home care eleven days ago. I have been fighting my way through a flood of emotions of such varying levels of depth and strength that I've had no choice but to abide in the Lord moment by moment for guidance and help.  I'm reminded of the story in which a man says, in despair, "There's nothing left to do but to pray."

His comrade is a person of greater faith and replies with gentle irony, "Oh my, so it has come to that!" And of course, in this place of complete reliance on God's provision I have indeed found that the everlasting arms do not fail. When I am too overwhelmed to hold tight to the Lord, He holds on to me. 

I'm still too immersed in a plethora of feelings to sort them out in a way that might be helpful to anyone else, but I do want to say I've felt pangs of regret borne of empathy for the full time caregivers who, still in the midst of bearing a heavy burden of full time caregiving, may feel they have lost my comradeship in their difficult journeys. There was a lady named Jenny who used to post comments occasionally at this blog, and several others for whom I prayed. I also know from looking at the stats page that there are a number of additional readers who have not left comments, but may have been helped by the guidance the Lord has provided Mom and me along these past 12 years as caregiver and patient.

Of course, those of you who have placed loved ones into nursing home care know that the caregiving role doesn't stop. I'm no longer in charge of changing my mom's bed each morning and I've released the responsibility for her personal hygiene to others, but my responsibility to her hasn't ended; I'll still be writing about caregiving. So that's the first thing I wanted to say; if you read this blog regularly and have gained comfort and strength, know that I'm still here and will still be sharing the encouragement that our Lord provides to caregivers. And, I'll go to work labeling past posts so you will be able to more quickly find one that meets your current need.

The other insight I need to share is directed toward those who have chosen nursing home care for loved ones who are in or approaching the later stages of dementia. It is a difficult truth but also oddly liberating to recognize that because of the confines of the disease, our late stage dementia patients don't pine for us when they are separated from us, not in the way we might fear. Because our roles have been reversed, I was afraid my mother would miss me as a child longs for her parent, or even in the way that a mother misses her absent adult child. However, Mom doesn't realize she has been moved to a nursing home, and assumes I'm nearby even when I'm out of her line of sight. And when she recognizes my absence, she isn't sad so much as she is angry in the way that an employer is displeased with an employee who has shirked assigned duties. Her anger is all the more virulent because she perceives herself as suffering because of my negligence. Mom is more mad than sad, and in a way this is easier to deal with than if she was suffering from homesickness and longed for the emotional support she once received from me.

And so one of my tasks now is to avoid projecting my emotions of grief and loss upon my mother when I visit her. She doesn't need my soulful gaze, my tears, or my professions of love and devotion. She would much prefer to have the chocolate bar I've tucked in my purse as a special treat.

My prayers continue for those of you who have traveled this caregiving road with me.  You've been my comrades in arms and I'm thankful and blessed by the encouragement you've provided along the way.  

Transitions and Changing Perspectives

I don't have a sister, but I do have a cousin who is just a couple of years younger than me. We share memories of childhood times and places that I have in common with no one else on the planet. Sister in Christ, trained counselor, social worker, and heart friend; she is precious to me. Her name is Pam.

Pam is used to fielding my multi-page emails; I often use her as a sounding board. Gathering my thoughts for her grants me perspective I would not have gained otherwise. In response, she sometimes shares valuable insights, but she mostly just expresses her love. Regardless of her response, I'm always blessed.

I'm going to share with you my latest missive to Pam, because transition times are rough, and I think others might relate to my struggles as I prepare to place my mother into nursing home care after twelve years of taking care of her in our home. My emotions are volatile, my physical body is exhausted, and I'm suffering mood swings. Yesterday morning I was honestly convinced the nursing home decision was a huge mistake, and felt panic-stricken.  This evening I am calm and am actually looking forward to a lightening of my responsibilities to Mom.   


Here is my latest email to my cousin:

Dear Pam,

I'm sending you this email because I know what's going to happen. As soon as I place Mom in the nursing home, I will give myself permission to grieve. I will then lapse into an "oh my poor dear mother what have I done to her" state of mind. If, at that point, I send you a sobbing email, you need to remind me of how grueling taking care of her has become. Remind me that I obeyed the Lord as to the timing of her nursing home placement, and that, while it is okay to grieve the mother that I've lost, that it would not have been okay to have continued to keep her here in our home at the cost of the health of my physical body and of my marriage.

While packing Mom's things, I came upon a transcript of Dad's funeral. The pastor had used a lengthy quote from me extolling my mother's virtues. "She is the kind of person who will never let anyone else do anything for her," I had said. "If you try to get so much as your own glass of water, she will say oh no no you sit there I'll get that for you." This was an excellent reminder for me that it is the brain damage and the disease process that causes these current behaviors. It's just horrible how we view the past through the lens of the present and begin to think that she has always been this way. She has not.

But I've also heard that once the journey is done, that the good memories come back. And then we view the disease process in light of the good memories we have of that person. This is lovely but… at that point I'll be at risk of self-castigation and that's where you come in and say, "No, no, no; remember how difficult she became!"

I know the thing to remember is that no matter how I'm feeling in the moment, the Lord is the author of this path we are on. I know He will take care of my beloved mama as she is placed into the care of others.  I pray God grants the nursing home staff compassion and understanding of her, and that she is protected from the irritability that comes from feeling confused.

It is so difficult not to worry about other people bathing her and helping her in the bathroom. Pray with me about her sense of safety and modesty.  Pray also that I'm given wisdom about how to talk with Mom about nursing home care, and how much time to spend at the there with her during her transition time. I know I must keep focused on the Lord's guidance and Mom's needs, and just turn a blind eye and deaf ear to any real or perceived judgments.

This is so hard. Thanks for being there, and thank you for praying for us.

Love, Linda

Preparation for Nursing Home Care

As promised, here is a list of the steps we've followed thus far as we prepare my mom, who has Alzheimer's, for nursing home care. I've made the list brief so as not to muddy the waters with details from our situation, which undoubtedly differs from yours. Find experts and talk with them; your Area Council on Aging and the administrator of the nursing home you've chosen for your loved one are good starting points. It is best to find an attorney who is an elder law expert to create the necessary documents:

1.  If the patient has dementia or may become unable to make decisions for him/herself, a trusted relative/friend needs to obtain Durable Power of Attorney for health care and financial needs on behalf of the patient.
2.  Living Will and Do Not Resuscitate documents if desired
3.  Personal Care Agreement (Advance Contract)--if a family member will be paid to provide care, you need a document that delineates the services that will be provided, and may protect the salary paid from a recapture of funds if the patient draws Medicaid.
4.  Calculate if and when you will need to apply for Medicaid.
5.  Veterans' benefits--If your loved one is a veteran or a spouse of a veteran, find your local Veteran's Administration representative to check eligibility for benefits.
6. Pre-assessment screening--In Kansas, this is referred to as a "care assessment;" I was told other states call it by a different name; it is a federally mandated pre-assessment screening and resident review (PASSR) that is required prior to nursing home placement. Nursing homes are required by law to have this form on file.
7. Dental and physical evaluations and necessary treatments.
8. Consider an appointment for your loved one with the facility's Medical Director to help him/her get to know your patient and medications
9. Prescriptions for all medications in their original containers
10. Communicate with nursing home staff--again, and again.  This is SO important. Help them to understand your patient's needs, habits, and daily routine to provide the smoothest possible transition.

As we move along in this process I'll add to this list. Of course this is not meant to be a guideline for anyone else--find the professionals you need to guide you through the process--but I hope this info can provide a helpful starting point.  Prayers are appreciated as we prepare my sweet Mom for nursing home placement. 

The Lord, Our Help

I'd watered some plants with this little pitcher, set it back in place still half full, and then accidentally knocked it over as I turned away.

My mother often asks for help from the Lord. Her requests range from an honest, "Dear Jesus please be my help," to a vexed "Lord help me" when she's under duress.

Mom has sprained a muscle in her upper back, and it causes her pain. This morning I gave her a back rub and she enjoyed the comfort of my ministrations, as evidenced by her little sounds of happy relief. However, even as she relaxed her tense muscles she said, "Lord Jesus, I would appreciate any help at all that you could give me."

Later I was on my knees helping her put on her shoes when she prayed aloud, "Lord if you could send me some help I'd sure be grateful."

I always have to repress my urge to reply, "What am I, chopped liver???"  (Wikipedia says that chopped liver was once served exclusively as a side dish, and tended to be overlooked; thus the origin of the phrase).

We are making wrenchingly emotional decisions on my mother's behalf as we work to prepare her for nursing home care, and of late I've emerged from my devotion time each morning still in a "Lord help me" frame of mind. Mom's obliviousness to the ways the Lord helps her through me is due to her Alzheimer's disease, but I wonder what I might use as an excuse?

This morning, though, I had a change of heart. Fresh from my mother's lack of awareness of my efforts on her behalf, it occurred to me that I treat God in the same way. And so I prayed, "Lord, open my eyes to the ways you help me."

A little while later I knocked over a pitcher that was half full of water. A thick, white hand towel just happened to be on the table next to the pitcher, and I grabbed it and easily cleaned up the spill before the flow reached the table's edge. I had cleaned up almost all of the water before the realization dawned: I'd been helped! One might even say the Lord knew I was going to need that towel and provided for me ahead of time. So before I cleaned the last little puddle, I snapped the photo above. I was able to stop myself before I uttered a resigned "Lord help me," and instead I prayed, "Lord, thank you for this towel!"

An expectation of the Lord's present, practical help is a marker of faith in His ability to supply all our needs.  Sometimes it isn't our circumstances that need changed, but our perspectives.  If we look for the ways God has helped us, we will find them, because God is indeed our help.

Father, please open our eyes to Your provision. Thank You for being our help!

We wait in hope for the Lord;
    he is our help and our shield.

In him our hearts rejoice,
    for we trust in his holy name.

May your unfailing love be with us, Lord,
    even as we put our hope in you.

Psalm 33:20-22