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.