Loving Lies

November 14, 2014November 14, 2014authorcarolshepley 2 Comments

Life is so wonderful. I have been caring for my mother who has dementia. I posted a blog about a conflict she and I were having. She wants her jewelry but her assisted living facility will not allow it on the premises. I received two wonderful and thoughtful replies. I needed help, and my friends gave it to me. I am so grateful. I am going to print their letters in their entirety as well as lesson fifteen from Lori’s Lessons.

Lesson 15: Accepting help is not a sign of weakness but of strength. It takes strength to accept your limitations and to allow someone to assist you. To ask for and receive help requires the powerful combination of humility and courage.

Letter one:

I read your poignant post regarding your Mom ON FB. My Mom too had AD until she passed away in 2007. I’ve also had many patients with it. [My friend is a neurologist.] Your comment “hate the disease, love the patient” was so right on. Even later in the disease, when Mom could barely talk, our psychic emotional bond was such that we just enjoyed sitting together very peacefully. However, there is a point when even that level of communication is gone and you realize you are just looking at an empty shell………………..

There are so many phases to this disease – good and bad – but no matter how awful they are, they all pass. As an example, the very peaceful phase with my Mom described above was late in her course. Early AD sufferers may go through a very unpleasant paranoid spell which sounds like your Mom’s present state. She may believe you are stealing from her, attacking her (my Mom would only let me give her IM sedation in the hospital), that her husband is an imposter, that you are deserting her (“Don’t leave me here,” which is the worst), etc.

BUT one way to deal with it – for her well-being as well as yours – is to lie. That sounds horrible and harsh but it is an important act of kindness. It may be the only way to make her memory loss work in your favor. You have to be creative. With her jewelry you could say something like, “Don’t you remember going over to my house with me last night and putting it in the ____ for safe keeping? If you want it back, I can bring it back tomorrow.” Hopefully she won’t remember tomorrow, but if she does you could say YOU forgot!

You may be able to get away with this for several days because she may not remember the previous day’s discussion. It is not mean or evil: it may give her a great deal of solace and peace of mind.

The subject may change. Like, “Where is so-and-so?” “He just left but is coming back.” You have to be creative and judge what she’ll accept. Remember: this is just another phase that will eventually pass.

You may also work with a phenomenon called “confabulation” which occurs in any type of dementia. At some level the individual may want to “save face” and not admit that she’s forgotten something. For example, to demonstrate the profundity of someone’s dementia – who seemed superficially intact – to students on hospital rounds, I might say to the patient, “How did you like that movie we went to last night? Wasn’t it great?” The patient – who never left the hospital – may agree and maybe even elaborate on the subject.

No one likes to be untruthful or “play games” with a loved one but, remember, she is probably not understanding the content of the discussion – like “your jewelry is safe” – but she will relate to the associated emotion – in your face, your tone, etc. Try to keep it upbeat and happy no matter you are telling and she’ll feel much better. (And so will you.) No matter how hard you try, you can’t MAKE her understand, but you can convey that everything is ok. You can make her happy even if things are grim.

My Dad died of prostate cancer in the same nursing home 3 months before my mother died. Mom was mute and incapable of any communication at that point. I did not think she could comprehend the fact of his death. But I did believe that if I told her I would somehow convey terrible emotions and she would be upset without knowing why. It was an excruciating decision not to tell her.

These are my insights I offer you. These were my coping mechanisms. You’ll find your own but I hope this helps. This is so very personal. I am an only child who had 2 dying parents – who I loved beyond love – in the same nursing home at the same time.

Letter two:

Carol, I am so sorry for you and your whole family. My mother passed away in April from this horrible disease that slowly takes your loved one away. I’d like to pass along something that someone shared with me … Along the way I felt awful about not being truthful with her … Like having to leave her for the night and she would want to come with me but I would tell her I would be right back.

As I walked out of her room one night a nurse saw me bawling my eyes out as I walked down the hall. She asked me what was wrong and I said I felt awful lying to my mother so much lately to get her to do things. I felt like I was lying like it was my job. She said to not worry, that it was OK because we call them “Loving Lies”.

At that moment I felt a sense of relief and very grateful that she passed that on to me. It helped my whole family be able to not feel so awful lying and having to trick her into things.

We laughed a lot too and when she would get agitated I always told she was so funny and that she could have ice cream or popcorn to get her to do things she wouldn’t do.

Even after I got her into the shower by bribing her, she wouldn’t remember afterwards about the ice cream. I would give her the ice cream anyway and she would just beam like a little girl.

Take care of yourself Carol … I know you’ve heard that a million times but it is not only emotionally and physically exhausting it is mentally exhausting trying to keep things for them as calm and peaceful as possible.

Who’s Afraid of Big Data?

October 16, 2014authorcarolshepley Leave a comment

Big Data frightened me. Just what is Big Data? The Wikipedia definition is “any collection of data sets so large and complex that it becomes difficult to process using traditional data processing applications.” It makes me think about the Government spying on everything in my life.

Recently, however, I received news about Big Data that changed my attitude. Because I feel so blessed to have been able to work with Lori and Bob Patin, I donate my royalties from Lori’s Lessons to the Michael J. Fox Foundation where it is used to aid Parkinson’s research. I want my book to improve the lives of Parkinson’s patients in every possible way. As a result of my contributions, I received a letter about MJF teaming up with Intel for an amazing new, Big Data study.

In this study, cellular research on Parkinson’s patients goes hand in glove with research in which patients are equipped with wearable devices that will capture data about their symptoms – slowness of movement, tremors, sleep disturbances – round the clock. In other words, biological research will be matched with clinical data. The report says MJF will “analyze that data to gain new and deeper insights into the nature of PD.”

Lori’s Parkinson’s specialist, Dr. Michael Rezak, believes that “We are not that far from a cure.” Lori works 24/7 combatting her disease and remains ever hopeful because “I am buying time until research finds a cure.” That may come sooner than we thought.

Alzheimer’s – A Gift

September 26, 2014September 26, 2014authorcarolshepley 2 Comments

Last night I ran into a friend who has been following my blog. He asked how my mother was doing and remarked that Alzheimer’s is really tough. So it is. This past year, this past summer has been challenging. Again and again I turned to Lori’s Lessons to remind me how to keep a positive attitude, to accept help, to take care of myself when I can. I have not read the lessons for a few weeks – because my mother is doing so well. Since she moved to assisted living, she has gotten steadily better.

I agonized over moving her. I hated taking her out of familiar surroundings. Yet she wasn’t happy there. She kept telling me she needed to go home even though she had lived in this same condominium for fifteen years. She had kind and conscientious caregivers, but she kept saying she didn’t want them anymore. I was over there five days a week managing the nurses, Mom’s issues, the doctors and her home, and I was exhausted. I consulted a geriatric specialist, her internist and a specialist in memory care. All said she would be better in an assisted living with staff trained in memory care.

She has thrived. My mother is a different person. On her second night in her new rooms, my husband, daughter and I visited with her on her terrace. She already seemed alert and happy. It was such a change from visiting her in the condo where she seemed confused and remembered little. On the way home, my daughter said, “She has something to talk about now.” In her condo, watching television all day put her into a daze. Now she goes to exercise class in the morning, eats lunch with a friend, plays bridge in the afternoon, then goes to cocktails and listens to music before dinner with friends. She has a new best friend, and they laugh all the time. They both repeat themselves, but it doesn’t bother them since both are telling stories over and over. Now Mom remembers things. She is winning at bridge, a game that requires memory power. She even has better balance when she walks.

I feel as if the weight of the world has lifted off my shoulders. I still visit three times a week because I want to spend time with her. I just received page proofs for my new book and am spending long days reviewing them. Before her move, I would have taken time from work to visit even though I had no time to spare. Even when I was tired and stressed, I felt I had to go because Mom seemed so pitiful and there were always problems for me to resolve. Right now it helps to be able to spend the whole day at my desk.

It is such a blessing. A miracle.

Lori’s lesson that resonates now is number 7: “Be grateful for every gift. I say a prayer each time I look at the flowers that grow from the seeds I planted.”

Ferguson – A Symbiotic Relationship

August 21, 2014August 21, 2014authorcarolshepley Leave a comment

As I care for my mother, I reread the lessons at the back of Lori’s Lessons because they inspire me. It struck me that Lesson Number Nine for Caregiving applies to the racial protests taking place near me in Ferguson today. Lesson Nine: Your caregivers will come to realize that when the person they love and care for has a difficult challenge so do they. Of course, the degree of ownership involved is different. Even though the challenge is primarily yours, it will confront your caregivers and affect them too. They can even make it work for both of you if they think about it the right way. It is as if it were written about the racial divide in my city and about white and black America.

Not to say that white America is the caregiver of black America, but the two are locked in a symbiotic relationship like that of caregiver and cared for. What affects those we live with
affects us too even if it takes place in a distant part of the city or country. We are the yin and the yang. If part of our community is hurting and in pain, so are we. We have to act in harmony to make this challenge work for all of us. We cannot just go about our business and pretend not to be affected.

I cannot venture to say who is right or wrong in the altercation that ended in the death of Michael Brown. Was Michael Brown an innocent victim? Was Darren Wilson provoked to shoot? The Grand Jury has convened, but a verdict is not expected until October.

Protestors make a case that Wilson’s actions were unwarranted. In the cities of America, police arrest African Americans more frequently than whites; in Ferguson, to be specific, blacks are arrested four times more frequently than whites. Arrest is one thing; killing is another. Yet, according to Juan Williams in yesterday’s Wall Street Journal: “More than 90% of the young black men killed by gunfire today are not killed by police but by other black men. About half of the nation’s murder victims are black even though blacks account for only 13% of the U.S. population.”

Where is African-American leadership today? In 1961, Martin Luther King, Jr., said: “We are ten percent of the population but we commit 58 percent of the crime. We need to address our morals.” This week, Reverend Al Sharpton praised the looters stealing liquor and hair-care products from the shops of Ferguson by saying: “These are not looters, they are liberators.”

Nevertheless St. Louis is a caldron that stirs up racial issues. For new book called St. Louis – An Illustrated Timeline: Blues, Baseball, Books, Crooks, Civil Rights and the River, I researched the Civil Rights movement here. I concluded St. Louis is neither South nor North. Like the South, it had a large indigenous black population. Like the North, that population swelled during the Great Migration. Like the South, the races have been segregated. Like the North and unlike the South, blacks have been able to vote since Reconstruction. I think African Americans protested their unequal lot here because they were not as powerless as they were historically in the South. Starting with the Dred Scott decision which was a test case leading up to the Civil War, Supreme Court cases that originated in St. Louis have advanced civil rights for African Americans.

Yet there are two St. Louises just as there are two Americas. My family and I live in an integrated suburb; our children went to integrated schools; we belong to an integrated church and social club. The African Americans we live with are educated and hold good jobs. I also have tutored African-American children in an inner-city school for seven years through a program at our church. I have worked with third graders who cannot read. They come to school hungry.

Given St. Louis’ racial history, I believe the protestors in Ferguson have much more on their agenda than the shooting that started it all.

Being a Parent to Your Parent

August 8, 2014authorcarolshepley 2 Comments

Last night we took my mother to the baseball game. She loves the Cardinals. When she met my father, she impressed him because she knew all the batting averages of all the players in the National League. We have had the date for a month and talked about it with glee.

Although she gets around pretty well, I put her in a wheel chair for the walk from the parking lot to our seats. She is very proud and hates the wheel chair but relented in the face of the long walk. The skies were looking ominous at this point, and Mom told me, “I’ll cry if the game is cancelled.” A thunderstorm ensued but passed quickly, quickly enough for the game to start an hour late. An 8:15 opening pitch is very late for my mother. Although she used to be a party girl, she goes to bed shortly after dinner in her 93^rd year.

The Cardinals took the lead, and then the Red Sox tied the game. Mom was looking tired. I asked if she wanted to leave. She admitted she was tired but insisted on staying. The clock struck ten, the Red Sox got another run and Mom dissolved. Like an over-tired three-year-old, she started crying. She told me she wants her dog back. (The doctor says it is unsafe for the dog to live with her because of her Alzheimer’s so I am bringing the dog to visit on a regular basis.) It is so sad.

Today I returned home to an angry message from my mother. “If you don’t give my dog back, I am never going to speak to you again. He is my dog.” I called the retirement home and was advised not to bring the dog to her today. As with a child, she should not be rewarded for bad behavior. I am trying to help her visit her dog, but she sees me as keeping her dog away from her.

It is so difficult to be the parent to my parent. I have to be strong. Sometimes I don’t know where to turn. Sometimes I feel sorry for myself. I reread Lori’s Lesson number seven for caregivers: The biggest challenge for your caregiver is: to hate the disease, really loathe it, but not resent the person who has it. He or she may know intellectually that it is not your fault, but every caregiver has moments of thinking: “Why me? What did I do to deserve this?” They have to set that aside and move on, for themselves as much as for you. Still, to underestimate the challenge of dealing with their emotions would be not only naïve but potentially destructive.

Inspiration

August 1, 2014authorcarolshepley 1 Comment

A few days ago I received an email from Lori and Bob Patin asking for advice. With a book signing coming up, they wanted suggestions for brief remarks. I thought about what I would say: the most important thing about Lori’s Lessons is that it is inspiring. Lori put it in a nutshell when she said “This happened to me for a reason. I have a feeling God wants me to do something with this.” She made this statement on her way home from visiting her doctor who had just told her that he had never see such improvement in a Parkinson’s patient nor did he know of anything like it in the literature.

Lori is a humble person so I do not expect her to tell the audience that her life story is inspiring. Perhaps Bob can say it for her.

I know countless people whom she has inspired, myself among them. As I have struggled to give care to my daughter with epilepsy and my mother with Alzheimer’s, I have reread both Lori and Bob’s words. Their example lifts me up and helps me do what is best for my mother and daughter and for myself. Sometimes I feel sorry for myself, but it helps to hear Bob acknowledge that all caregivers do. His advice also helps me remember to do good things for myself as well as for Mom and Mimi.

To set out to inspire others seems a heavy task. Yet, when I looked up the word in the dictionary, inspiration is also light. In my favorite Merriam-Webster from the 1920s, the first definition of inspiration is: “the act of breathing in.” The second meaning is: “A supernatural divine influence on the prophets, apostles or sacred writers by which they were qualified to communicate truth without error.” The third meaning is the one we most commonly associate with inspiration today: “Act or power of exercising an elevating influence upon the intellect or emotions.”

From the first two definitions, I understand that inspiration should be as natural as breathing and that it comes from the divine. So it is both light as air and heavy with sacred responsibility. Lori’s inspiration is both of these as it elevates us intellectually and emotionally.

Let me be a challenge-adjusted learner

July 5, 2014authorcarolshepley Leave a comment

There is nothing I like more than a good night’s sleep. Lately that pleasure has eluded me. I am so concerned about my mother’s safety that I lie awake with my stomach in a knot. She has recently been diagnosed with Alzheimer’s so I know that her condition will get worse. Now she is very confused but still with us. She is living in her condominium – which is large, about 4,000 square feet, with four nurses taking care of her. She can never be alone. The nurses are all kind and conscientious people. Two can redirect Mom when she is upset about something, but two cannot handle her. I receive frequent calls and texts about problems. I visit and call and comfort her when she does not know where she is. She likes two of the nurses but wants to get rid of the other two, which she cannot do. I think even she realizes that, as confused as she is.

Her specialist told her she needs to move to assisted living arrangements because she will be safer where they are trained to deal with the exigencies of Alzheimer’s. She said she will think about it but does not want to go. Finally four days ago, she told me she did want to go because she does not want to have nurses anymore. In the assisted living facility, she can live on her own since nurses at the facility will check up on her. Then the next day she told me she changed her mind. She remembers little but remembered that.

I spoke to her primary doctor whom she admires and respects. When she visits him in two days, he will tell her she needs to go to assisted living. Hoping she will listen to him, I have arranged for her to move the next day. I know it will be very difficult: I will have to move a lifetime into three rooms. Dealing with Mom’s emotions will be worse.

No wonder I cannot sleep just when I need that balm most.

Once again, I turn to Lori’s Lessons. I read a quote from Aeschylus that Bob relayed to me: “Even in our sleep, pain which cannot forget falls drop by drop upon the heart until, in our despair, and against our will, comes wisdom through the awful grace of God.”

Then I read on. Bob said, “You can be angry about this stuff or you can change yourself to accept it. It is your choice. You can let it bother you or you can accept that it is simply Parkinson’s. Anyone thrown into this type of problem needs to become a ‘challenge-adjusted’ learner. This means you re-examine your assumptions and honestly assess reality and re-make the plan for each new set of circumstances. If you hold to the old plan to confront new challenges, you’ll just compound the emerging problem.” If I substitute Alzheimer’s for Parkinson’s, Bob is talking to me. Thank you, Bob.

Taking a good attitude about cognitive “deficits”

June 27, 2014June 27, 2014authorcarolshepley Leave a comment

I recently read an article in the April 28 New Yorker by Michael Kinsley who was diagnosed with Parkinson’s twenty years ago and is beginning to evidence some cognitive “deficits” as, he says, neurologists “put it tactfully.” The article treats a very unfunny subject – the onset of dementia in Parkinson’s patients – in a manner that ranges from witty to laugh-out-loud funny. My favorite example of the later is a discussion of famous people with Parkinson’s, including Hitler, Franco, Mao Zedong, Michael J. Fox and Thomas Hobbes (the author of Leviathan who said life is “poor, nasty, brutish and short.”) Kinsley writes: “Is it just a coincidence, I ask you, that both Hitler and Franco were nasty, brutish and short? Chairman Mao was five feet eleven. Michael J. Fox is neither nasty or brutish but he is undeniably short.”

Because dementia is associated with the later stages of Parkinson’s, Kinsley decided to take a cognitive assessment test that he had taken twice before, once right after his diagnosis and then again eight years ago. “My motive was part scientific inquiry, party hypochondria, and part the journalist’s reaction to any interesting development – this will make a great piece.” The test showed a decline in executive functioning. The doctor told him it is exactly the decline that would be expected in people in their sixties who received the diagnosis in their forties. Kinsley remarks, “Although doctors are devoting their lives to helping people get better, they seem to find a strange satisfaction in seeing a disease take its expected course.”

One of Kinsley’s most interesting observations comes right at the beginning of the article. “You are the person least qualified to be writing about changes in your own brain, since you need your brain to comprehend these changes. It’s like trying to fix a hammer by using the hammer you’re trying to fix.” A happy insight for me caring for a mother with Alzheimer’s. I think her disease is protecting her from realizing how much she has slipped mentally. Like Kinsley and Lori, her attitude is good.

Hard Decisions

June 19, 2014authorcarolshepley 3 Comments

I was driving to a friend’s to talk about Lori’s Lessons to my book club when my mother’s nurse Ashley contacted me. Mom is in the early stages of Alzheimer’s. Most of the time she is good except that she has no short-term memory, but last night she was terribly upset. Mom was frantic to get home, although she was in the condominium where she has lived for fifteen years. The nurse asked me to speak to her. It was so sad: My mother was desperate to get home to my father. I had to tell her he had died twelve years ago. Then she was upset that she couldn’t remember he had died.

I had to choose whether to turn around and go to my mother to comfort her or to continue to book club. After Ashley texted me that mother had calmed down, I knew she was safe with her nurse, so I decided to go to the meeting but to tell my friends I might have to leave before the discussion. At least I wouldn’t be letting my friends down altogether. Shortly before everyone sat down, I called to learn Mom was asleep. Fortunately, I had made the right decision.

I keep in mind Lori’s lesson number 19: Make sure your caregiver has something else in his or her life to give him or her fulfillment. A steady diet of you/you/you will get a bit stale. He or she will return refreshed after doing whatever it is that interests him or her. I love writing and speaking about my writing. And right now it is a wonderful distraction from caregiving. I want to keep focused on my writing even though Mom needs me so. I need to balance my mother’s needs and my needs.

Keeping a Good Attitude in the Face of a Bad Diagnosis

June 12, 2014authorcarolshepley Leave a comment

It has been a tough week. I took my mother to the Memory and Aging Project at Washington University hoping to hear that her short-term memory problems were the result of stroke. After testing her for two hours, Dr. John Morris concluded that this was not the case. He diagnosed her with Alzheimer’s. My father had Alzheimer’s for eleven years, and his end was terrible. He was a very good man and did not deserve to suffer the way he did. The prospect of seeing the same disease through with my mother has been a blow.

After crying a lot, I turned to what I have learned from Lori Patin. When she received her diagnosis, Lori said “I felt like I just wanted to sit in a corner and cry until I died.” Then at a Parkinson’s conference, she heard a neurologist say that no one ever died from Parkinson’s. It turned her life around. She realized: “I’ve got time! I don’t have to let this disease control my life. I can make the best of my life. I can choose to not let this get to me. And, if it does, then I can figure out another way to fight. And another way after that. I can beat this.”

I know we can’t beat Alzheimer’s, but we can make the best of it. My mother has started on Aricept, a drug that should keep her in the early stages of A.D. for two to three years. The early stages are not so bad. Mom has very little short-term memory, but she is there in the present. She is herself. She remembers us and has her personality. She is happy and full of love. She is glad to be alive. We can’t beat this disease, but we can enjoy the present, Mom’s present and our life with her.

Attitude is everything. Mom was a Christian Scientist for a while as a teenager and retains that spirit of thinking positively. No matter what happens she thinks of it in the best way. She takes a positive outlook toward her condition, and I will too. Like Lori, I won’t let this disease control our lives. Mom and I will make the best of our lives. As Lori says, “keep in mind that this is the one life you have and decide to make the best of it.”

Carol Shepley

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Parkinson’s