All That Remains is Love

Mom copyIn her condolence note, a friend reminded me of my blogs talking about my mother’s dementia and my struggles managing her care and her life.
Reading through my blogs of a year or two ago, I revisit our struggles. How angry she became when she could not keep her dog or her jewelry in assisted living. How sad she became when she repeatedly told me that she wanted to go home, even though she was in the condominium where she had lived for sixteen years.

I revisit how terrible I felt about moving her to the full-care facility. The social worker told me that other residents had been complaining because Mom did certain anti-social things such as lying on the couches of the living room during cocktail hour. Complaints accelerated when she was cursed with horrific gastrointestinal distress. Because her bouts came on so suddenly, she would rush to use the toilet in other residents’ rooms. This was an invasion of privacy that continued for many months until the facility insisted she had to leave.

I hated to put her in that wing where my father had suffered and died. I could barely force myself to walk in there.

We resorted to loving lies. The patient-care specialist instructed me to take Mom out to lunch. During that time, the staff moved her belongings to the new room to make it look familiar. Feeling like Brutus, I brought her back. Mom immediately said, “Why are you taking me here? This is not where I live.” The specialist said, “You are just staying here temporarily. Your room has been flooded with stinky sewer water. It needs to be cleaned up.”

I knew this was the beginning of the end. I was so sad. Yet, I soon realized this was the best place for Mom. Her condition had deteriorated to the point where she needed the constant attention of the full-care aides who were like angels.

Despite all her infirmities, my mother always smiled and expressed her appreciation to the staff and to me. Despite the profound grief of watching my mother slip away, we shared many beautiful moments. When everything is stripped away – home, clothing, activities, even the ability to walk and feed oneself, all that remains is love.

I recall Lori’s Lesson: “Be grateful for every gift.”

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Loving Lies

Mom, Mimi and Me copy

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.

Love my mother, hate her dementia

My mother has dementia and part of her condition is that she obsesses about things. Lately she has been obsessing about her jewelry. Because her assisted living facility has a policy preventing guests with dementia from keeping valuable jewelry in their rooms, I put my mother’s jewelry in a bank safe. In a rational moment, she thought this was a good idea. Now, however, she wants it in her room and says she doesn’t care if it gets lost or stolen. She called and left an angry message saying she didn’t want to see me if I didn’t bring it to her.

I know this is just her dementia talking. She used to have such good judgment. She obsesses about other things too. She called a friend about a ride to bridge three or four times and me just as often. But it didn’t hurt my feelings when she was worried about her ride: she wasn’t angry at me over the ride.

??????????????????????????????????????????????????????????????????????????????????I spend so much of my time taking care of my mother that I have become the boss in her eyes. She knows I am in charge of her life now, and she doesn’t like it much. (Neither do I but who is going to tell her that.) When she gets angry over her loss of control, she lashes out, sometimes at me.

It really hurts. I need to separate myself for a few days when she does this because I feel sorry for myself and that can translate into lashing out right back at her. I do a little self talk where I remind myself that this is her disease talking, not my mother.   I get some exercise. Eat some chocolate. Remind myself how loving and appreciative she can be. Reread Lori’s Lessons. Whatever it takes to get my equilibrium back.

Lesson number 20 resonates with me now. 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.

 

 

Who’s Afraid of Big Data?

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.

Big-Data1

With a Little Help from my Friends

Six months after my daughter Mimi was diagnosed with epilepsy, we finally had a breakthrough. I had told a friend, Barbara, how Mimi was struggling with the limitations of her condition. She just wanted to be a normal teenager – which means doing a lot of things that can cause her to have seizures. If she had been a little girl, I could have disciplined her to act within the limitations of epilepsy. If she were an adult, she would have the judgment to do so herself. Unfortunately, discipline and judgment are not teenage virtues. Barbara had a friend whose daughter, now in her late twenties, had come down with epilepsy as a teenager. Barbara put us together.

Talking to someone else with epilepsy was a revelation to Mimi. She heard this lovely young lady talk about how difficult it is to have seizures. How embarrassing. How she would be afraid of having one whenever she went to a party. She talked about going out and drinking and then having a seizure the next morning as the alcohol wore out of her system. She was so open with Mimi. Mimi hung on her every word. This young lady now only drinks one beer at a party and gave Mimi examples of witty comebacks when people ask why she isn’t drinking. Mimi walked away standing taller than I had seen her in a long time. For perhaps the first time, Mimi could see herself getting a grip on her condition.

Yesterday I had lunch with Barbara. I hope I was able to return the very great favor she did me two years ago. Someone very dear to Barbara also has seizures. I was able to share our experience with the drugs Mimi has taken. I hope it will help.

I reread Lori’s lessons. Two have made a very great difference in my life. The first is to be very honest about your condition. Lesson 8: Own and accept your situation. Don’t deny full ownership or lie to others about it. Being honest with yourself about your challenge allows you to confront it rather than to hide which just wastes time, energy and resources. Being honest with your friends draws not scorn or isolation but sympathy, prayers, resources and ideas to support your fight. You will be amazed at the forces that come your way if you just share your story. Because I was open and honest about what was going on with Mimi, Barbara could throw us a lifeline.

            The second is to seek out friends and communities that will nurture you. Lesson 9: Seek out communities that will nurture you. Communities are an extension and reflection of the family and they enhance life. Belong to a community and it will celebrate with your joy and commiserate with your pain. You need the members of the community for support, and they need you as a good example. Expect to be responsible to and for the community, just as it is responsible to and for you. Isolation is a killer and inclusion is a savior. This applies to everyone, not just people struggling with medical conditions.

Mimi, Addie and jack

Alzheimer’s – A Gift

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.”

 

Mother's Daay

Ferguson – A Symbiotic Relationship


Fergusons - ProtestorsAs 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 withFerguson Tear Gas
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

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 93rd year.

The Cardinals took the lead, and then the Red Sox tied the game. Mom was looking tired. I asked if she wanted to leavecardinals. 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

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.

Patins - picture 12I 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.

The Joys of Caregiving

 

This week I have experienced the joys of caregiving. I have written so many blogs about its trials that it is a pleasure to be able to write about the other side.

I wasn’t so sure about blogging when I started, but I really enjoy it. I sit down to write a blog and I figure out what I am thinking and feeling. I keep returning to Joan Didion’s words: “I write entirely to find out what I am thinking.” Sometimes I feel as if I am slumping along, with my feelings hovering like a great black cloud over my head, like that character in Li’l Abner, Joe Btfsplk. When I sit down to write, I figure it out, and the black cloud goes away.

This week I moved my mother to assisted living. At the recommendation of her Alzheimer’sDog's Night Out specialist, she has been thinking about moving, but hesitating to do so. The retirement home director advised me to tell her she had to go “because the doctor said.” I couldn’t do that. If it wasn’t her decision to move, she wouldn’t like the new living situation.   I took her to her primary physician whom she loves and respects. He told her: “It is time.” She said, “Yes.”

Still I expected resistance. I didn’t get it. I asked the nurse to take her on an outing and then to play bridge so I would have four hours to manage the move. I replicated as much as possible the two rooms that she had lived in out of her seven-room condo. When I showed her the new place, she said, “It is beautiful. It is so big.” Then she hugged me and said, “You are so good to me.”

I have been praying day and night that I would know the right time to move her, that the move would go well, that she would be happy. Lori told me that she asks people to pray for her, so I asked all my religious friends to pray for me. My prayers have been answered.