God Always Has a Plan

 Recently I was chatting with my daughter-in-law, Nicole, and she shared some difficult circumstances she has encountered in life. Not only did she feel ostracized as the result of multiple allergies that caused her to be unable to participate in most school celebrations, she was a farm girl who attended high school classes in a wealthy school district. Despite these things this energetic and hard working young woman became president of nearly every organization she joined, made cheerleader, and earned several scholarships as she headed off to college. She is now ready to begin her second year of vet school.

As she talked I was interceding on her behalf but also praising God for her, because she is a strong Christian.  I am so grateful for Nicole's presence not only in my son's life, but in my own; and as I prayed I felt a familiar nudge in my heart. It was as though the Lord was saying, See?  Nicole learned how to be different, and although her heart was hurt along the way I have healed those hurts. What remains is her understanding of how to be in the world but not of it.   

I said as much to Nicole. "The Lord used everything that has happened to you for your blessing," I said. "As Christians we must accept  we can never belong to the worldly club. Some people really get hung up on this and can't take that feeling of not belonging.  But this is a skill the Lord taught you early on."  

When you can't trace His hand, trust His heart...; these are lyrics from a wonderful song by Babbie Mason. I've learned that the Lord always has a plan, and that it is wise to  give Him the benefit of the doubt when things look bleak. My guesses as to what He might be doing are often inaccurate, I'm sure; but one thing is certain:  if I don't open my eyes to look expectantly for the good that the Lord can deliver, I won't see the blessings He is able to bring even out of the darkest of circumstances.

For example:  I am now able to sincerely praise God for the time I've cared for Mom in our home. It took awhile--I couldn't see blessings at first--but now I could fill a page listing the wonderful things that have happened, not the least of which is that Mom and I have had time to lay aside old resentments. I never would have guessed that eight years into her Alzheimer's diagnosis Mom would still be here telling me on an almost daily basis that I am a wonderful blessing in her life. Who would have anticipated that?  Well, the Lord did, obviously! 

That song I mentioned by Babbie Mason says it all. You can find it on Youtube here.

God always has a plan, and we can trust it is a good plan that will work out for our good and His glory. 

Scripture: "And we know that in all things God works for the good of those who love him, who have been called according to his purpose" (Romans 8:28).   

"...for I know that through your prayers and the help given by the Spirit of Jesus Christ, what has happened to me will turn out for my deliverance" (Philippians 1:19). 

Blaming the Victim

It is human nature to attempt to separate ourselves from the misfortunes that befall others.

Car accidents (she wasn't careful enough), illnesses (he didn't exercise), identity theft (she shouldn't have shopped online); whatever the difficulty it is instinctive to attempt to distance ourselves to a place of safety by casting some sort of blame on the victim. We want to maintain an illusion of control over our lives.

 I've come to recognize that all too often my way of separating myself from Mom's Alzheimer's disease comes perilously close to casting judgment. And you know what the Lord says about judging others:  Don't do it! 

Yesterday my mother punched a hole right through my judgmental thoughts with a heart-rending entry in her journal. She had called me nine times during the afternoon for trivialities, and when the ninth call came (she asked me to fetch a diet coke for her from the refrigerator ten paces behind her chair) I am ashamed to admit that I lost my temper. I tried valiantly to explain to her that she was well-cared for, that she didn't have to phone for things that she was able to do for herself, and that she needed to stop thinking she was living in a luxury resort and acting like she didn't think the service was up to par. 

Mom just looked at me as I vented and when I was done said, "Well, my dear, I do hope you feel better."  I left the room and I am sorry to say I slammed the door.  But here is what Mom wrote in her journal:

The problem must be my Alzheimer's--Lord, is there a way for me to understand...to know and do what is proper? It is frustrating to know my reasoning is not as it should be. Lord is there some way I can know how to speak and treat others?  Lord please guide me to be right in your eyes. 

Well, this made me cry.  However, when I rebound away from a judgmental frame of mind, I am in danger of suffering such an anguish of compassion for the difficulties my mother faces that I'm left just wanting to indulge escapism to avoid the heartache.

One of the readings in my book addresses this issue:

I felt as though I was walking a narrow beam labeled Godly and Loving Caregiving Behaviors, and was constantly in danger of falling off. On one side was the hazard of hardening my heart to my mother’s situation so that I didn’t have to feel grief over her or fear for my own future. When I fell off on this side of the beam, I became callous and tended to blame Mom for having become infirm. On the other side was overwhelming pathos and grief over the so-called tragedy of Alzheimer’s. When I erred to this side I felt anguish of spirit, terrible pity for my mother, grief over losing her, guilt, and a hopelessness that was not of the Lord...this was an unholy grief that blinded me to the fact that God was in control and had provided richly for us.

Oh I remember the grief of those difficult early days of caregiving. When I cried out to the Lord over this issue this is the answer that came:

The sensations of hopelessness felt by a Christian are quickly laid to rest when we look at our Savior’s face. Our hearts do not become hard, and we do not fear the grief of dying and death because we know we don’t have to bear grievous events alone. Our grief is temporary, but oh the tragedy of hopelessness suffered by those who do not know Christ, or who have refused Him. Now, for just a little while, the Christian may endure suffering and grief, but we look forward to a future free from sorrow and pain. Despair is not the portion of those who hope in Christ.

I don't need to drown myself in pity for Mom; God has provided richly for her as he has for me.  I do need to guard my heart and my words, and to realign myself with the Lord daily.  

An interesting postscript; Mom has not called me one time for a trivial request since she prayed that prayer above.  Since she blessedly has no memory of my remonstrances I can only assume that for this time the Lord is helping her to understand and to do what is proper--just as she requested.

Avoiding Unpleasantness

This summer I have worked out an exchange with a friend whose son needed tutoring in reading. I spend 35 minutes a day teaching her son to read, and she spends that time with my mom. It is a lovely arrangement; Mom receives focused one-on-one time from a caring and kind visitor while my friend's son receives the help he needs to begin the next school year reading at the same level as his peers.

This arrangement has been a blessing and I would urge other caregivers to find similar ways to exchange work assignments. The change itself is refreshing; I'm so happy to be using my teaching skills again and to have a bit of respite from caregiving. 

However, I'm sure you know that most Alzheimer silver linings contain a cloud or two!

The difficulty that has emerged with Mom's daily time with my friend is it elicits a "That was really nice I want more" response in Mom.  Although I am in her room a minimum of seven times a day and often take time to sit down face to face and spend a few minutes chatting with her, she feels a new discontent. It's as though this time with my friend has ruffled her emotional feathers and she lacks the ability to put them back into place on her own.

So she calls. A lot.  She wants "...to hear a human voice...a diet coke...some crackers...to talk awhile...to come in and watch you work...some company..."  In short, although she has no memory that my friend has been to see her, the interaction has somehow roused discontent and she wants more attention!  If I do not respond instantly to her or, Heaven forbid, miss her phonecall, she writes things like this in her journal:  "Called Linda just to talk--was told she was just in here a while ago. Courtesy to the elderly not required. Call no one for anything. Not even if dying. No one can be bothered to reach out to the elderly."

This just makes. me. want. to. SCREAM!  Facts and logic make no difference at all to an Alzheimer patient; lacking memory, Mom's emotions provide the most reliable source of information that she has. If she feels discontent she assumes there is some viable reason for her emotions.  Thus, as her caregiver, it is important that I recognize I am responsible for her emotional well being as well as for her physical comfort.

Great.

But, with the Lord's help, and if I can keep myself from reacting as an offended daughter rather than responding as a concerned caregiver; this isn't too difficult for me.  I am learning to ask "What would make Mom happy?"

Oddly, quality time is rarely the answer regardless of the fact that Mom thinks this is what she wants.  When I attempt to spend some extra time with her when she is feeling unhappy, she can't be sweet talked out of her bad feelings.  She will stare at me accusingly and say things like this: "Linda, do you think the elderly deserve good treatment?"  Now let me promise you, there is no right answer to this question. If I answer in the affirmative, as I recently did, she replies, "Well then why don't you think I am getting that kind of treatment?" 

I've learned that what invariably makes Mom happy are gifts--preferably food gifts--but a pretty flower, a new c.d., or any lovely object that I can set on her chairside table work well too.  This afternoon (after the "don't call even if dying" post) I felt a gift of the highest caliber was called for and, since it was her snack time, presented Mom with a fudgy chocolate cupcake and a cup of coffee. Worked like a charm.

Soooo....here's a summary of this rambling post.  1)  Don't shoulder the entire burden of caregiving yourself. Work out an exchange with friends or family so that you and your care recipient both receive a refreshing change of scenery and/or company.  2)  Respond to your care recipient's unhappiness from the perspective of a loving caregiver rather than according to the rules of past relationship roles. 3)  Recognize that although changes of scenery and company may cause emotional upset, the cognitive stimulation such things provide help maintain a higher level of functioning. 4) Find out what makes your care recipient happy and blatantly utilize this strategy to avoid unpleasantness!

Apathy in Dementia Patients

I've been working on finishing my new book (don't be too impressed, I have no publisher) and have neglected this caregiving blog of late. Since caregivers are the people closest to my heart outside my own family members, this makes me feel guilty! Below you'll find a reprint of a post from a year or so ago entitled "Apathy in Dementia Patients," and I pray this is helpful. I know that my mother's lack of empathy for my struggles has caused me  heartache, and  understanding that the characteristic apathy of dementia is to blame has helped me to cope. 

On Easter morning, 2004, I slid into my customary pew at church with several minutes to spare before services were scheduled to begin.  I noticed that my mother’s space at the end of the row was empty, and felt a glimmer of worry. She was a stickler for punctuality and never missed church.  She taught me always to arrive early, especially for holiday services.

I excused myself and called Mom.  “Oh, I just decided to stay home today,” she said. When I reacted with shock, she complied with my wishes and came to church, arriving twenty minutes late.  This incident was one of many that let me know something was wrong with my mom. 

Apathy is a common side effect of dementia, and is sometimes the first symptom noted.  Dementia patients may display indifference regarding schedules in combination with an apparent lack of emotion toward concerned loved ones who object to their behaviors.  Symptoms of apathy probably cause more conflict between caregivers and patients than any other early warning sign of dementia. A caregiver may have an intellectual understanding that the care recipient should not be held accountable for disease related responses, but it is difficult to transfer that “in the head” understanding to the heart.  The tendency is to react to the loved one based on the relationship that existed before dementia occurred rather than to respond from a caregiver’s perspective.

Apathy may be a result of the physical damage that occurs as the characteristic plaques and tangles of Alzheimer’s disease wreak havoc in the brain, but there is a psychological and emotional basis as well.  Forgetfulness and confusion cause dementia patients to lose confidence in the ability to successfully perform everyday tasks.  Repeated failures can result in a reluctance to make the effort to try.  People who suffer dementia often ask others to carry out tasks they are still physically able to complete, a behavior that in the general population might be labeled lazy or self-centered.  However, for the dementia patient, requesting help is actually a viable coping mechanism that helps to compensate for failing memory. 

When I respond to my mother’s requests with irritation, I take from her the dignity of retaining a measure of control over her environment.   She has learned a new way to get what she needs—she asks! 

It is only in recent years that Alzheimer’s disease has been widely recognized and diagnosed.  There are doubtless a number of readers who remember a parent or grandparent becoming stubborn or demanding, and only in retrospect have understood that Grandpa’s “hardening of the arteries” and Grandma’s stubborn streak were dementia related.   It is my hope that our current, more accurate understanding of the physical basis for the behavioral changes of dementia will ease the sad memories some of us have of the puzzling or hurtful behaviors a loved one exhibited toward the end of life. When my own mother goes home to be with the Lord, I pray to remember her as the vital and loving person she was before dementia robbed her of the ability to think clearly and respond appropriately.  

Fritos, Anyone?

As I’ve observed my mother’s responses to the cognitive changes caused by her Alzheimer’s disease, I’ve become convinced that dementia patients are often treated unfairly for behaviors that are disease related; in other words, they are blamed for stuff they can’t help. I believe this is true. 

However…

 

A car ride with my mother is an exercise in patience for me. She thinks the tones that chime  to tell us to fasten our seat belts sound like they are saying “dang me dang me dang me,” and when she hears these tones she sings the chorus to what is surely one of the most annoying songs ever written, Roger William's rendition of “Dang Me.”   She does this every single time.  And if I don’t laugh at her little song, she gets a long-suffering look on her face and feels as though she is not loved and appreciated as she ought to be.  

After a few minutes she typically begins to sing snippets of hymns or 1940's popular songs to herself  and if am distracted and miss an approximately five second window of opportunity to compliment her singing or sing along with her, she talks to herself, saying, “Just shut up Anna Ruth. No one wants to hear you sing.” She then stares out the window, offended and hurt. Soon she doesn't remember why she is angry but she does remember that she's mad.

Today when I took Mom to the beauty shop I weathered this pattern of behavior with an admirable lack of daughterly annoyance, and with caregiverly wisdom I drew Mom's attention away from singing by telling her a funny story about her great grandson, Daniel. "He has a box turtle, and it is the best fed turtle in town," I said. "Daniel feeds it strawberries, bananas, and crickets. The only thing it has ever refused to eat are grapes."

"Bring the grapes to me then," said Mom.

When we pulled into the beauty shop, Mom noticed the unmown yard next door. "Hmmm. I hope they don't think I'm going to go over there and mow that lawn for them," said Mom.  "If they do they've got another think coming because I'm not doing it!"

These two comments triggered a memory for me from a long ago psychology course.  "Egocentrism," I thought. "She's relating everything back to herself." 

When we returned home I did some internet searches and though I didn't find much about egocentric behavior in Alzheimer's disease, I did find a relatively new study that said not to blame young children for egocentric behavior. It seems that an immature prefrontal cortex in the brain renders a child incapable of empathy and selfless behavior.  Here's the summary of the study from sciencedaily.com:  Self-Centered Kids? Blame Their Immature Brains. 

Now. Isn't it reasonable to think that the plaques and tangles of Alzheimer's, which cause brain damage and shrinkage in the size of the brain, could have a similar effect?  After all, many caregivers refer to Alzheimer's disease as "aging in reverse."

When children are selfish we discipline them and attempt to teach them differently. Disciplining a dementia patient would be a stunningly inappropriate response. Teaching something new is ineffective, because dementia patients are slow to learn new behaviors. Thus, the strategies we use to deal with egocentric behaviors in children certainly cannot and should not be utilized with our dementia patients.

Instead, we must adopt caregiving strategies that honor the dementia patient's integrity and yet keep the caregiver from going

stark

raving

mad.

Easier said than done.

Distraction is my number one caregiving strategy when my mother is engaged in a negative behavior. I bring her a snack, or tell her a funny story, or show her something beautiful. A new book to read is always a successful distraction strategy for Mom.  Car rides are difficult because I'm unable to give Mom my full attention as I'm preoccupied with driving. Only as I write these words has it come to me to hand her a bag of crunchy snacks as soon as we are settled in the car.  She can't sing "Dang Me" through a mouthful of Fritos!

I don't think. 

Grow Up!

No one likes to be told what to do, and this one fact causes much discord in the caregiver/patient relationship.

Caring for someone who has dementia requires grace and humility to be able to comply with the loved one's demands. Being a dementia patient is difficult, too; imagine not quite understanding one's circumstances or the reason for the loss of autonomy that has resulted in being told when to bathe, eat, and sleep.

I let my mother down rather severely last night. The ongoing difficulty is that I tend to respond to her as though she was the competent mother I had pre-dementia.

Mom called at about 7:30 p.m. and asked that her shades be put down.*  She calls the mini blinds that are at her big bay window drapes, and said, "Could somebody please close my drapes?" I was watching TV and did not want to get up. Furthermore, Mom is still able to lower the shades herself, however, the middle blind had broken, and a replacement blind had arrived. My husband John's extra height allows him to reach the brackets for the blind without a step stool. So I told Mom that when John arrived home I'd send him in. "It will be just about a half an hour," I said.

Several caregiving errors transpired here. I assumed Mom could remember help was on its way and was able to figure out a short term solution for the discomfort of sitting opposite the night darkened windows. She could have chosen to sit on the couch rather than in her chair, removing her from the line of sight from the windows that bothered her. She could have closed the two side shades herself. Or she could have done her best to ignore the situation, trusting that help would soon come. But the fact is once Mom had asked for help, she had shot her strategic bolt and was done. She sat, imprisoned by the dark windows, and felt increasingly frightened and helpless.  And then she got angry. 

And so she called once more and yelled at me. She often suffers the misconception that she lives in an apartment and needs to call maintenance for anything that is amiss, and she began the conversation by saying she would like to lodge a complaint. Her voice trembled as she spoke of the big, dark windows staring at her. And instead of responding with compassion and remorse, I acted like a child being taken to task by her mother. I was offended and I allowed her to see that I felt affronted as I clambered atop a step stool to temporarily  prop the old shade in place. I repeated her offense to my husband the instant he walked in the door and as a result he was somewhat terse with her as he installed the new blind.

Mom sat, huddled in her chair; aware she had done something wrong but still struggling against the vestiges of fear that had been elicited by her lack of ability to control the discomfort of sitting in front of those looming, dark windows. 

I've repented of the sins of lack of compassion and empathy for my mom as well as for repeating her offense to my husband; but my penance is completed by recording the facts of this event here. If one other Alzheimer patient can be spared the heartache of coping with a non-empathetic and childish caregiver who lacks the grace to submit to being asked to carry out a simple task in a timely manner, maybe poor Mom's discomfort tonight will not have been in vain!

I speak to myself and to other caregivers struggling with similar issues: GROW UP!  Children are unable to receive instruction or to submit to requests without balking. Grownups ought to be able to feel compassion and to submit to requests with humility.  Lord, grant me grace to be a grownup who can respond to my mom's demands with grace. 

Scripture: "Be completely humble and gentle; be patient, bearing with one another in love" (Ephesians 4:2).

*My mother, though in the mid stages of Alzheimer's, is still able to use the phone. I've programmed my cell phone number into her phone on "speed dial," so she has only to press one button to put a call through to me. I painted the button she must push with red fingernail polish, and used my label maker to place instructions right on the phone:  "Lift receiver, press red button."

Grateful for Mom

A few weeks ago I read a quote from another blogger that touched my heart. I will share her quote in a moment, but I need to preface it with a few words that will explain why it meant so much to me. I hope you'll be blessed too.

Since my mom's Alzheimer's diagnosis I've learned I can't trust my perceptions of the motives behind her disease related behaviors.  We tend to view the past through the lens of the present, and so my mom's current negative behaviors can cause me to remember past upsetting events and to say, "You know, I've just realized...she's ALWAYS been like this."

This isn't true. Parents and offspring traverse rocky places in their relationships as the children grow up. This is a normal fact of life.  The difficulty is that the emotions elicited by Mom's Alzheimer related behaviors are so similar to those I felt as a teenager who thought her curfew was unfair! I often feel resentment and a sense of betrayal that are unwarranted given that my mom truly can't help her current emotional and cognitive state.  To remember past hurts in light of current disease related behaviors is unfair to the dementia patient. 

It's just so hard, because that lady sitting in her recliner in the next room looks and sounds much as my mother always has. My logic and reasoning tell me that her behaviors are the result of Alzheimer's, but my heart often tells me something very different. It is in this region of emotion that I must be very cautious not to react to my mom based on the unfair premise that she understands how hurtful she is being.  Responding as a loving caregiver is much to be preferred to reacting like an angry teenager!

It's time for that quote, used by permission from ljrc1961, from her post entitled "Alzheimer's Disease and my Momma":  

 I just want all mothers and fathers to know this...you are not and will never be a burden to your children. If we act as if we are frustrated by your questioning, your sense of loss, your inability to perform like you used to; it is not because you are a burden. It is because we, your children are struggling with how to accept that we are losing what we used to have with you . Never, ever feel like you are a troublesome factor in our lives. It's important that all of you hear that now. I think it is also important that all of us remember that Alzheimer's is a disease but it is not a death. I haven't lost my mom rather I have gained a good friend who is genuinely happy to see me each time I visit and she remembers me. Not my name or that I am her daughter, but me. The people who love you will grieve a short time for the person they thought you were and will in a short time relish the person you are.

This blessed me on several levels. How sweetly she puts into words the fact of our heartache as caregivers. "...we... are struggling with how to accept that we are losing what we used to have with you..." And how gently her words comfort me regarding my own future!  "...Never, ever feel like you are a troublesome factor in our lives...Alzheimer's is a disease but it is not a death..." I have undergone much anguish as I fear becoming dependent on my own children, even though I freely acknowledge how much I've been blessed by Mom's continued presence in my life.  Somehow this lady's words released me from the fear of becoming a burden to my own children. This release has come because I have been reminded that most of the anguish I've suffered has not been my mother's "fault." I think that's what I've dreaded the most: the possibility of someday being blamed and perceived as a burden (as I've at times felt my mother to be a burden). The fact is, most of the negative feelings occur as the caregiver progresses through stages of grieving and acceptance and are more about the caregiver than the patient. If we can persevere in traversing these difficult stages of grieving, the long goodbye of Alzheimer's allows us adequate time to emerge on the other side of this process and to find a new appreciation that our loved ones are still with us. At long last I'm beginning to appreciate my mother once more. For such a long time her disease has prevented me from remembering the good times. 

As caregivers we have to remember that present grief can distort the memory of past blessings.  I have learned my own perceptions are not to be trusted when my heart is aching with grief of loss.  

And just a note: yes, I have written a book that addresses all these issues. My spiritual gift is the ability to see and record spiritual truths, and as I transitioned into the role of being my mother's caregiver, I recorded the guidance God provided us. These Scripture based truths recorded in my book have served as a template for me; you see, recording what I see is not quite the same as living what I've learned!  That's what this blog is about, and I praise God for fellow travelers on this journey. May the Lord bless each of you. 

Here is my prayer:

Lord, in my struggle to accept the loss of my mother as she once was, keep me from hurting her heart with negative reactions to behaviors she can't help.  Help me to recognize and to value the blessings of the mother I now have, and release the mother she once was. In Jesus' Name I pray!

Happy Mother's Day to my sweet mom, and thank you to the writer known as lrjc1961, whose words have helped to open my eyes to the many blessings of my mother as she now is.