Constructed Guilt

An Alzheimer's diagnosis can elicit a mess of grief-fueled attempts to shift responsibility to others, and a particularly sad aspect of the disease happens when the patient blames his or her primary caregiver for...everything. This can happen even to good and Godly patients, but it is perhaps more likely if the individual has experienced discord with a spouse or other loved one over years of time. Here is a word of warning for all of us who suspect the future could hold a diagnosis of dementia; work hard to forgive. People who go into Alzheimer's disease with unforgiveness or unresolved anger intact can become a menace to those they love. 

Dementia patients lose the ability to draw accurate conclusions from environmental cues, and when a  patient's perceptions are also canted by an assumption that the caregiver is guilty of wrongdoing, disease-riddled logic may conclude that sarcastic and vindictive responses are justified. Patients who hold bitter resentment toward their caregivers can cause emotional damage.

Sometimes caregivers assume blame where none exists in order to excuse a dementia patient's hurtful words and attitudes. There is probably a more correct psychological term, but I call this "constructed guilt." It happens when our loved ones' bitter anger toward us as caregivers is so painful that we construct guilt for ourselves to explain their attitudes. We do this because it is easier emotionally to believe that we brought some of the harsh treatment upon ourselves than to feel we are hated without reason. In Alzheimer's, grudges from the past become mangled and garbled. Patients are no longer certain why they are angry or with whom, and it is the primary caregiver who is likely to receive the cumulative detritus of resentment, anger, and blame.

Releasing guilt can leave a caregiver feeling more vulnerable; it seems safer to say "I don't handle caregiving situations very well and that's why my loved one is having a bad day," than, "My loved one feels hateful toward me just because I'm me!"  But it is better to give and receive forgiveness on a daily basis and then deal with the suffering caused by being the recipient of anger as the Bible directs: "Therefore let those who suffer according to God's will entrust their souls to a faithful Creator while doing good" (1 Peter 4:19 ESV). 

Here are some ideas that may help when dealing with an angry dementia patient:  

--Keep yourself clean of resentment, bitterness, and anger. Bring your sorrows to the Lord on a daily basis. Ask forgiveness and forgive.

--Don't stop praying for your patient.

--It can be nearly impossible to redirect a dementia patient who is angry, but it's worth a try--a tasty snack, an entertaining movie, or physical comforts such as a warmed blanket or sweater may distract. The primary caregiver is often the target of the patient's irrational anger, and so calling a friend or co-caregiver to take over for awhile can help defuse out-of-control emotions. Gauge the level of anger and use your knowledge of your patient to help you decide what course of action to take--and pray.

--Understand that even if venomous words and actions are truly directed at you (as opposed to being misdirected due to confusion about your identity, or simply a symptom of the disease) it doesn't have to devastate you.  If your patient is a loved one, this takes time and effort.  Practice not being devastated, and remember that the Lord's love for you will not waver.

--If don a mantle of excessive care and kindness, you will risk being mocked; if you engage in a shouting match you will affirm your patient's suspicion that he/she is the wronged party. A relatively neutral and matter-of-fact demeanor is best.  Don't allow the patient to elicit strong negative emotion from you.

--Watch your body language. Do not communicate anger. School yourself to keep your caregiving interactions gentle and friendly, even if you are being berated as you comb hair, help the patient into a sweater, etc.

--If the patient is safe, don't hesitate to leave the environment until you feel calmer. Call a friend or co-caregiver to take over for awhile when you need time to recuperate. 

 Of course there are no perfect caregivers, and in any human interaction there is most often wrong on both sides. That is why we must seek the Lord daily and pray "...forgive us our trespasses, as we forgive those who trespass against us."   

Blessings for Those Who Stay

This beautiful graphic is from my friend Abby over at Little Birdie Blessings. Pay her a visit! 

If you will look closely at the lovely graphic above from Little Birdie Blessings, you will see that the design is superimposed upon the music to a wonderful hymn entitled God Will Take Care of You. This verse from that hymn blessed me this morning:

No matter what may be the test

God will take care of you

Lean weary one upon His breast

God will take care of you.

I am nearing the end of my ability to endure the increased level of care my mother requires now. After 12 years of caregiving I feel very near saying "Enough is enough," but when I brought these emotions to the Lord this morning, I heard Him say,

"Bide just awhile longer, Child, and trust Me to take care of you." And as I wept and prayed, words began to flow, rich comfort I'd like to share with those of you who have remained in difficult life circumstances according to God's will.  Sometimes it is God's will for us to leave, but when we stay because He has directed us to do so, we can have confidence that He will not forget us. He sees our suffering and will provide for us.   

Blessed are you who have stayed when circumstances seemed intolerable;  God has seen, God knows, God will take care of you.

Blessed are you who have kept the door open to those who have broken your heart;  God has seen, God knows, God will take care of you.  

Blessed are you who have remained steadfast in your relationship with loved ones who have dementia, even when you have become a target for vindictiveness you did not earn and resentment you do not deserve; God has seen, God knows, God will take care of you. 

 Blessed are you who toil day by day behind closed doors, in ways others will never see or know, for people who cannot give you thanks for your service or praise for your sacrifices; God has seen, God knows, God will take care of you. 

The Savior who did not withhold His life  and has promised to stay with us always has prepared a special blessing for those who do not withhold their lives from the needs of others; to those who have chosen to stay. He sees. He knows. He will take care of you.

Prayer:  Father, here are our broken hearts. Here are our years of service. Here are the tears we can't shed, the words we can't speak, the heartaches we can't share.  Thank You for seeing, knowing, and caring for us.  

Queen of the Manor vs Sorrowing Sufferer: Long Live the Queen

My mother has been given the gift of being able to accept help from me without undue angst.  Oh sometimes she resists my guidance, but for the most part, her way of coping with the help I must give  is to assume the persona of  one who has hired a service. I am merely someone who is performing an expected task, and thus her world is brought into an endurable balance. She doesn't have to feel guilt or undue remorse over me (despite my oftentimes blatant bids for sympathy).  I am the waitress, housekeeper, nurse, or cook; someone whose job it is to do what I'm doing, and often she can see that I'm not particularly well-qualified.  Good help is hard to find, and so she endures.

This isn't an uncommon strategy for dementia patients, but is one I found demeaning when I was  a new caregiver. Even now there are days when I feel like Cinderella at the mercy of her stepmother.  The detachment my mom assumes when she is in "queen of the manor" mode is hurtful; this, along with the havoc caused by Alzheimer's, blinds her not only to my emotions but also to any responsibility she might have to accept my ministrations with love and gratitude rather than with an attitude of entitlement.  

In my struggle against resentment I was helped by these thoughts: do I really want her heart to bleed over all she is putting me through? Am I really so petty that I would enjoy her suffering over the difficulties I've endured on her behalf just so I could lap up the sympathy and credit my tiny ego craves? 

Well of COURSE not.  Give me an uppity dementia patient any day over one who is stricken by suffering and grief.  It's enough of a prayer challenge for me to cope with my own load of sorrow; if Mom was suffused in grief over her condition, well, that would be horrible.  But she's not sad, not at all.  She's happy with her stack of books, her journal, and her music c.d.'s.  Meals delivered on time and with a proper attitude of consideration and care please her, delicious food delights her.  Mom enjoys life.  

And I am truly glad that she does, so glad.

A post I wrote back in 2012 deals in greater detail with this issue of coping with our loved ones' hurtful words and attitudes, along with helpful Scriptures and an excerpt from my caregiving book.  You can find it by clicking on this phrase: ...she treats me like hired help...

Shem and Japeth Had it Right

This beautiful lap robe was made by our daughter-in-law and provides a "covering over" Mom appreciates very much! 

I've begun a year-long Bible reading plan, and thus far, six whole days into the New Year, I'm doing pretty well with it (last time I read through the Bible it took me nearly three years to complete).

Last night's reading included an account of Noah and his three sons, Shem, Ham, and Japeth. Noah had gotten drunk and was lying on the ground unclothed. Ham saw him, and hurried to tell his brothers all about it. Shem and Japeth took a blanket, held it between them, then walked backward to cover their father so they would not see his shame.

When Noah woke up and figured out what had happened, guess which of his sons received his blessings and which one was cursed?

I'd read this Bible story before without applying it to my own life in any way, but last night I remembered the passage that says, "Love covers a multitude of sins"  (1 Peter 4:8).  I thought with discomfort of how, when my mother hurts my feelings, or does something embarrassing or rude, that I call my daughter to vent, or tell my husband all about it.  I could help them to respect my mom more by covering over her wrongdoings and disease-related behaviors, but I want sympathy. The truth of the matter is this: we don't need human sympathy when others mistreat us, we need to partake of the Lord's solace.

This morning as I brought my list of hurts to the Lord, it was as though I heard Him say, "Are you going to allow your mother’s sins against you to corrupt your relationship with Me and thus forfeit your own well-being, or are you going to partake of My forgiveness toward you and then extend that grace to your mother?"  

Well, when He puts it that way, of COURSE I'm going to choose to say "I forgive..." but the Lord has to make it real.  We aren't able to get at the recesses of our own sin-stained hearts, but we can say the words--again and again, as necessary, "Lord thank You for forgiving me, for Your sake I forgive these others who have hurt me..."   

It is blessed to cover over the wrongdoings of another person. When we turn to other human beings for sympathy and support ahead of crying out to the Lord, we not only display a lack of trust in God to take action on our behalf, we also risk causing harm to relationships. I've had to ask forgiveness today for damaging my daughter's perceptions of her grandmother by complaining about details of caregiving that my daughter did not need to know.  

God really likes it when we cover over the sins of another person, forgive, and bring our aching hearts directly to Him with no stops along the way.  He is able to provide the solace and help we need.  

Caregiving Decisions

Note:  This post is aimed toward those who feel  convinced they need to take care of a loved one at home and are experiencing opposition from well meaning family and friends. Every caregiving situation differs. If your heart tells you that you can't care for your loved one at home, please understand that there is no disgrace in finding a suitable long term care solution, in fact, when a patient's needs have escalated, this becomes the kindest and safest solution for all. As one nursing home administrator told me, "We have a staff of 40 people. You are just one person. We can do a good job for your mom."  Mom is still at home with me, but at the point I can no longer meet her needs, she will be blessed by nursing home care. 

***

 If you are prayerfully led to take care of someone whose suffering can be alleviated by your service, be cautious about how to proceed as you face criticism and complaints from those who fear there will not be enough of you to go around. It is difficult to face down naysayers, but God is our help, and we must realize that if we turn away from a Holy Spirit fueled desire to provide care for someone we love, heartache will result.

The Biblical book of Esther tells of a young woman who was called to serve her people in a difficult way. When she attained the position as queen according to God's plan to deliver His people, she balked at the danger fulfilling this call would bring to her. Her kinsman, Mordecai, was strict with her: "For if you keep silent at this time, relief and deliverance will rise for the Jews from another place, but you and your father's house will perish. And who knows whether you have not come to the kingdom for such a time as this?"  When God has placed a call on our lives to minister to those who are suffering, there will be fears to face and answers to provide to those who don't understand.

Yes, we need to take care of ourselves, we need to be prudent, and we should take into account the needs of other people who depend upon us. But we must not allow fears, our own or those of those who love us, to derail us from service that God has called us to fulfill. Our Lord is able to meet the needs of our loved ones either through us or in some other way. What is important is that we pray through to peace about every decision we make that impacts the lives of those who are no longer able to speak for themselves. 

These posts may help you if you are in the process of making caregiving decisions for a loved one: 

Caregiving Decisions: Pray Through to Peace

Making Decisions for Dementia Patients: A Christian Perspective

Right Where I'm Supposed to Be

Remember How She Loved You...and Still Does

Night falls so rapidly in December, and early too.

I know my mother doesn't like darkness staring at her from her bay window;  I don't like undrawn shades at night myself. But this evening it was 5:20 before I noticed that afternoon had faded to an early night.  Sunset in my area was at 5:04 p.m.

I decided to prepare supper for Mom before I went in to pull her shades. She's always happier if I am not empty-handed when I appear at her door, especially when it is near meal time.  If I thought about the darkened window at all--and I don't think I did--I would have concluded that the lit Christmas village on her window sill would keep Mom's attention from the undrawn blinds. Supper preparation took about 15 minutes.

And so by the time I entered Mom's room, she had probably been staring at the dark windows for thirty minutes or so. I don't know why she didn't call me as she usually does when she wants her shades drawn, and I don't know why that this evening it bothered her so much; sometimes she is absorbed in journaling or reading a book, oblivious to the window. But tonight she was angry, and I think she had drawn the conclusion that I'd left the shades undrawn in order to torture her; thus she fell to the mindset of a victim who wishes her torturer was gone from the face of the earth.  As I covered her feet with a warm blanket  and placed her supper plate on the lap desk before her, she let loose with a venomous string of hate-filled words that literally left me reeling. I did not at first connect her anger with the undrawn shades and was stunned. 

I'm blessed to have children who pray, and texted off a prayer request to each of them.  My son called and said, "You know, Mom, the other night when Dad came to help me with my remodeling project, I thought about how loved I am and how much you two have done for me out of that love.  And I thought how painful it would be if either of you got Alzheimer's and turned against me, and that helps me to pray for you more with Grandma. But I also know if that ever does happen that remembering how much you all love me now will help me to know that anything negative is just the disease."

How often we hear that, "It's just the disease." But tonight the truth hit home for me. Alzheimer patients believe their caregivers know everything. If they have pain, they think the caregiver knows. If a tooth hurts, or nausea strikes, or a darkened window frightens, a dementia patient believes the caregiver knows all about it and leaves the problem unaddressed. And they are prone to believe that this lack of action indicates that they are unloved. The hurt that flows from this sense of being uncared-for is probably the source of the most of the angry words and actions they exhibit that cause us as caregivers so much distress. It isn't their that their love for us has died, it is that their perceptions are inaccurate.

My children and I prayed together for Mom. Their love was such a blessed balm tonight. When I went in to see Mom awhile later she was happy and calm.  "You are just wonderful to me Sweetheart, thank you," she said.

Our tendency is to dismiss the positive because there has been negative, but that isn't love's way. My son reminded me tonight of something I really had forgotten: my mother loved me and supported me for the first 50 years of my life. That hasn't changed; the eleven subsequent years of our Alzheimer's journey can't undo those years of her love and service. Mom loved me, and loves me still. Anything negative is just the disease. 

Emergency Fudge

Sometimes I think those of us who considered ourselves good parents when we were raising our children make caregiving errors as we attempt to do a good job taking care of a loved one.  The rules for caregiving are somewhat different than the rules we imposed upon our kids for their own good, particularly if the patient is elderly.

My mom has no dietary restrictions, and she likes her desserts.  When she first came to live with us I rationed her sweets, substituting fresh fruit and things like carrot and celery sticks for the crackers and cookies Mom preferred.

What was I thinking? Was I concerned about long-range ill effects?  The woman is 91 years old and is suffering from a terminal disease! Though I do pay attention to her nutrition and make sure she receives balanced meals each day, Mom's happiness and the impact the food she receives has on her perception of well-being need to influence my decisions about the snack foods she is provided.

This is how I've come to have a stash of emergency fudge in the freezer. When Mom is in a dark mood, I bring her a generous piece of fudge and a cup of decaf.  This cheers her up Every. Single. Time! The only problem with this system is that my husband and I also like the fudge very much, and thus it is difficult to keep a dependable supply on hand.

We think my fudge recipe is delicious, and it is lower fat than most. I'm sharing it here as a gift to caregivers and patients everywhere. During the stressful holiday season, most of us could benefit from a having a stash of emergency fudge on hand.

Yummy Easy Fudge

12 oz package of semi-sweet chocolate chips (I use Ghirardelli brand in the gold package)

14 oz can of Eagle Brand Fat Free sweetened condensed milk

1/2 teaspoon vanilla

Handful or two of mini marshmallows

Melt the chips and sweetened condensed milk together in the microwave--about 1 minute on high.  Don't overheat--the chips will keep their form until stirred. Stir until smooth, add marshmallows and stir until they melt. May need a few more seconds in the microwave. Stir in vanilla. Pour into a buttered 8x8 dish. Wrap well in plastic wrap and refrigerate or freeze.  

Merry Christmas!