A recurring theme is that circumstances, events, decisions, etc.,  made early in life often impact us through our lives and often culminates (good or bad) when we are elderly.  One of the theories in social science that helps explain this is called Cumulative Advantage/Disadvantage Theory.  I recently wrote a short paper describing how this theory can be used to explain much of moms life course.

It is a personal account of how events in her life that started in childhood led her to make decisions that impacted  her throughout life.  Some of the stories are told from her point of view and in complex relationships there are always two sides to every story. Mom and I were not close during my teen and young adult years because 1) our personalities were very similar and 2) I was an angry kid because she divorced dad, married Art, and moved us away from home.  I was too young and blinded by anger to understand the benefits of these events at the time, but came to appreciate her courage and determination as I matured.

Cumulative Disadvantage Theory is a logical explanation of how individual circumstances, when young, can have a negative effect throughout life. There is a personal element that each individual has throughout the life course that will also impact their direction. In other words, when we become adults we make our own decisions, but they are often influenced by earlier events.  That has been true in my life and was true in moms.  This is one reason I am so passionate about telling young parents that their choices will have a life-long impact other their children.

My mother was raised on a large farm in South Georgia, with three brothers and a younger sister. Her father drank and often became violent when he was drunk. She often told me how afraid everyone was of her dad and her memories of childhood were filled with ridicule and physical abuse.   She left home at a relatively young age to escape her life with her dad and moved to Albany, Georgia to attend vocational school.

She met dad, fell in love, got married, had three children within four years and discovered she married someone who had many of the negative qualities she despised in her dad. As a result, she divorced by dad and became a single mother with no skills and no education. Dad was not violent, but he loved alcohol and women more than being a family man. She worked multiple jobs, got little financial support from dad, and struggled to keep us together.  We were fortunate because we lived next door to dads parents and they played a significant role in caring for us as kids.

She was angry at her dad and my dad and under enormous pressure to make ends meet. She was a firm believer in totalitarian rule in the home and resorted to many spankings and the atmosphere in the home resulted in frightened kids. In spite of all the challenges, mom was tenacious and after five years of being a single parent, met her soul mate, who she spent the rest of her life with.

Divorce has long-term impacts on individuals, but a good relationship can result in many advantages. When mom remarried, she had security and peace. The result was that she explored many creative passions and started a company where she made flower arrangements for weddings and other events. She and my step dad became interested in Fenton glass and traveled all over the southeast looking for glass to complete a set. She enjoyed about 30 years of a rich and rewarding marriage before she developed early-onset dementia in her early 60’s and passed away at 74 after a long battle with Alzheimer’s disease and Lewy Body disease. Her doctor indicated that long-term stress can have significant impacts on the body and mind and often shows up years later. It is certainly not clear if the early life stressors led to mom’s untimely death, but her childhood, first marriage, and single-mother status resulted in wear and tear on her.

Divorce often results in long-term negative impacts on children and research shows that elderly that are divorced often have less support from adult children when it is needed.  Historically, mothers receive far more support than dads because children were mostly raised by their mothers and dads had less contact with children after a divorce.

This is certainly not always the case now that men often have at least partial custody.  Kids are still exposed to negative comments, arguing, and fighting that can have serious consequences for the children.

These life decisions are often repeated by following generations. I married someone when I was young and we were not compatible, so it ended in divorce.  We had two small children who were caught in constant conflict and now they are grown.   The bottom line is that who we marry or cohabitate with has consequences. The significance is intensified when children are involved. The kids are impacted by what they see, hear, and experience from their parents and those their parents expose them to. These also have a cumulative impact.

We all make mistakes in life, but we need to learn to recognize and admit our mistakes and repair those lost relationships.  The baby boomers are getting older now and we each need to think about our choices.  Is there someone we need to reach out to?  Can we mend a relationship?  A recent study was conducted among elderly men in prison.  The researchers taught the men forgiveness by telling them they needed to forgive themselves, but also others.  The results showed improved mental and physical health, improved socialization, and improved attitudes about life and loved ones.  I think that is a discussion for another time!

Baby Boomers are Getting Old 

Those of us in the baby-boom generation (1946-1964) are beginning to hit retirement age and it is expected that Alzheimer’s Disease (AD) and other age-related dementia will reach an epidemic as more of the baby boomers age.   One study suggests nearly eight million cases of AD by 2030.

Currently No Cure, But Hopeful Prevention

Since there is currently no cure, many scientists are researching ways to slow the progression or prevent it from starting.  One study conducted at Knight Alzheimer’s Disease Research Center at Washington University in St. Louis, found exercise improved some patients risk factor of getting AD by reducing APOE4 (E4).  Everyone has Apo lipoprotien (APOE), a blood protein that helps metabolize cholesterol, but there are different variant’s.  Those with E4 are 15 times more likely to develop AD.   The research found that those exercising a minimum of 30 minutes, five times per week had fewer plaques in the brain and E4 carriers benefited most.  It seems that exercise helped reduce the risk of AD.  This study was discussed in a January 2012 article in the New York Times and a link to the article is provided to the right under Research Links.  The article provides a more detailed summary of the exercise study.

We Must Exercise More

Numerous studies show the benefits of a healthy lifestyle that includes proper diet and exercise, but a 2010 report from Centers for Disease Control (CDC) found only about 14% of those between 65-74 and 7% over 74 exercise on a regular basis.  We are a sedentary society and it is killing us!  There is much more to say about this subject because there is a way that we can improve our lives as we age.  Our society cannot support a large influx of demented, elderly patients, so we need to take better care of ourselves and turn away the inevitable consequences of AD and other age-related illness.  I am sedentary, overweight, and prefer ice cream over veggies, so it starts with me!   It is time for me to get fit by 50!

Art is Doing it RIGHT

My step-dad, and my mother’s soul mate, is living a healthy life and beating the odds.  He has always been physically active and it was likely one of the reasons he survived two rounds of a very aggressive Lymphoma.  He has been cancer free for over two years now, and MAYO doctors tell us that it is about 85% chance that it will not return.  Art exercises every day, eats a mostly healthy diet, and keeps his mind busy with jigsaw puzzles, word games, Saduko, and other mental exercises.  He is physically fit and his memory is better than mine.  Not bad for someone that just turned 74!   

Happy Birthday Papaw!

Life continues on after a beloved family member is gone.  We recently celebrated Art’s 74th birthday and our newest family member is in the photo above.  She is just a few weeks old and is my sister’s first granddaughter.

He successfully completed the treatment and checked mom out of the facility within a few days of his last chemotherapy session. Mom’s condition continued to deteriorate and bringing her back home was confusing and difficult for her to adjust. The stress on dad intensified and within nine months the Lymphoma returned. The treatment for his aggressive Lymphoma was very difficult and required hospitalization for a short period. We tried to keep her home for him, but we all had full-time jobs and children, so it was not plausible. The doctor told dad his body required rest and minimum stress. He was so sick that he had to stay with us many days while he recovered.

She could barely walk without assistance by this time and could not go to the bathroom alone, take a shower, or eat without help.  Her condition deteriorated quickly and she died within a couple of months after returning  to the facility.  

It was one of the hardest decisions for dad to make, but the reality was that he would die before her if he did not focus on his health instead of hers. We miss mom terribly, but dad has remained cancer free for 18 months and doctors tell us that 24 months means about 85% chance it will not return. I am thankful that he is still with us and healthy. 

The photo to the right is Brittany and Kaiden.  She is my niece and was visiting her Papaw when he was the sickest.  She was invaluable to us and more importantly to Papaw.  She never quit providing him with excellent care.  She made sure he made it to appointments, took his medicines, and ate properly.  I will always appreciate her poise and calm under a stressful circumstance.

Caring for a loved one is a family or community event.  My hope and prayer is that the United States will become more aware about the challenges of the caregiver and provide more assistance.  I do not mean by way of government and taxes, even though, government has an important role.  I mean the community: Friends, Neighbors, Civic Associations, Churches, and other groups.  This is a significant burden on caregivers and they need our help.

The staggering number of dementia patients estimated over the next 20 years could overwhelm our healthcare system, so we need to start planning to rely more on the community to help with long-term care like that required for loved ones with dementia.

This year we met at a new location.  It was certainly different, since we met in Alabama at my cousins lake house.  This location is about 1.5 hours west of our usual meeting place in Albany, Georgia.  Deannie and Stafford were wonderful hosts and I am thankful for the beautiful setting we enjoyed for our Thanksgiving meeting. 

The photo to the right is my Uncle JO and his family.  We were pleasantly surprised this year when Jack, Sunday, little Jack, and Tom came all the way from Manchester, England.  They missed the last two years since Jack was transferred there.  They were not expected to come this year, but they conspired with Connie, flew from Manchester, and made it Alabama in time for lunch.  It was such a treat to see them.

Having our Thanksgiving gathering in Alabama was an extra treat for me since it is about 40 minutes from my mother’s birthplace in southwest Georgia.  We made it to my mother’s little sister’s home in time for Thanksgiving dinner Thursday evening.  It was so good to see everyone in Iron City, Georgia.

Friday morning I found this little guy was interested in the swing hanging from a large Oak Tree.  He was pushing it, spinning it, and lifting it for about 20 minutes.  I am so easily entertained.

These two were pushing the swing back an forth.

After a cup of coffee, I headed to the cemetery to spend a few minutes alone with mother.  Friday was my birthday and I wanted to visit her and tell her how much I miss her and long for her presence.  There is something about visiting a loved ones gravesite.

As Friday came to a close, we were treated to a beautiful show as the sun began to set across the pasture behind my aunt’s home.

There is so much to be thankful for.  We enjoy life in the greatest country in the world and we have family and friends.  We all need to take a little time to count all the ways we are blessed.

This photo includes mom’s husband and soul mate, Art, her three children with their spouses, grand children, and great grand children.

This beautiful young lady is one of mothers grand daughters with her handsome little man.  He is the newest member of the family and, unfortunately, never met mom.

This is my beautiful daughter and my grandson sitting on a bench near the end of the walk.

This is my sister and her family.

This is my “older” brother and my “older” sister-in-law.

The following is my clan and I was so grateful that they were able to make it.

This is a photo of my two precious little girls

We participated in this walk in honor of mom.  We have never done this before, but we all agreed that it was important that we get involved to raise awareness about this disease.  We still miss Lela so much and think of her every day.  We have not gathered as a family much since she passed away, but we will get together Sunday for Thanksgiving.  Mom would be so happy to know we are making the effort to spend time together.  I am excited!   We only get to live this life once and I want my brother, sister, and their family  to be part of it.

We talked about many issues openly, but it was not easy.  I wanted to know what decisions to make for her before she was too sick.  Mom was clear about prolonging her life artificially.  She did not want a feeding tube or any other “life support” when she was nearing the end.

GET A LIVING WILL

Mom and Art had the attorney complete living wills for each of them and had the other legal documents prepared that we would someday need.  It is imperative that people talk about these issues and get the legal help necessary so your wishes are documented.  It is important that someone in the family knows where to find the documents so they can provide to those in the health care industry.     

One of the most difficult issues was decisions to make when she approached the end of life.  The legal documents are important, but she was fairly open about telling us what she wanted.  I am so glad we talked about it 10 years earlier.

Starvation is one of the ways those with Alzheimer’s ultimately die. 

Mom was never a big eater.  She was a physically healthy person and always attentive to her appearance.  As the disease worsened, her appetite declined to the point that she would not eat very much.  She would always eat a Blizzard from Dairy Queen until the end.  Family members visited mom regularly in the nursing home and we would try to get her to eat.  My brother had the most success since he was the most patient.  It takes lots of patience to get someone with Dementia to do just about anything.   The feedings went from solid food to liquid, but she would not take the liquid.

When mom quit eating completely and began a rapid decline, the nursing home called one evening to inform us that they were calling an ambulance to take her to hospital for a feeding tube.  My initial response was to agree, but as I ended the call, I looked at my dad and said “Mom does not want the feeding tube.”  He agreed, so I made the difficult call back and asked that they cancel the ambulance and contact Hospice.

Over a decade earlier mom told us that we were to let her go when she reached the point of a feeding tube or other medical procedures to extend her life artificially.  It was very hard to tell the nursing home not to take her to the hospital, but we were somewhat comforted knowing that we were carrying out her wishes.

Talk about the tuff stuff and know how to make the decisions for your loved one when they cannot make them for themselves.  Obviously, you need legal documents too, but TALK.

I would need a book to explain how important my grandparents remain in my life.  Grandma was so sweet and would do anything for her family.  While I could never repay what these two did for me, there is an encounter I had with Grandma while visiting with her.

I have no idea if it brought her any comfort since she was in the advanced stages of Alzheimer’s, but it was something I know she thought about her entire life.  She wanted to be a nurse when she was younger, but her father would not allow it.  He felt it was not an appropriate job for a lady.  She told me that story many times when I was growing up.   She could not understand why her father was so against it.

Grandma had such a sweet and gentle nature that made her an exceptional fit for a career in nursing.

One evening Grandma and I were sitting at the kitchen table talking and for a moment she was there with me.  She asked how college classes were going and asked about my young children.  We talked about old memories and were having a great visit.  Then something unexpected happened.

Grandma suddenly looked at me and called me Papa, the name she called her father.  I thought she was cutting up with me at first.  She asked me about going back home and seeing her mother and then I realized the Alzheimer’s disease took her to a different place and time, so I decided to go there with her.

We talked back and forth briefly and I really do not remember the small talk, but then she looked right at me and asked the following:

Papa, why wouldn’t you let me be a nurse?

My reply was to tell her I was wrong and if I had it to do all over again, I would fully support her.  I (Papa) told her that she was the sweetest person I knew and had no doubt she would be a wonderful nurse.  My final comment was to tell her how sorry I was for not supporting her all those years ago.  Grandma smiled and said “Thank you Papa.”

This was a very special moment with Grandma.  Maybe I should have just said it’s me, Scott, but I knew she carried the regret of the lost nursing career her entire life.  I wanted her to hear her father acknowledge that he made a mistake.  I wanted her to hear that he was sorry.

It is not likely that Grandma had the ability to remember any of that exchange, but for that brief moment I was able to be the person she wanted to talk to.  I felt it was my duty to be that person for her.

I stepped out of reality and into her world for that instant and strongly encourage those caring for someone with Dementia to do the same.  They lack the ability to enter reality, so enter their world whenever you have the opportunity.  Just remember, you cannot stay there!

Pat, however,  interprets death differently for those afflicted with Alzheimer’s.  My mom went through many stages with this disease.  There were times that she did not recognize Art as her husband, but she still looked for him and wanted him to be near her.  She relied on him.

I asked Art about the Robertson comment and he reminded me that mom liked to watch the 700 Club.  She would even send money from time to time to support the ministry.  Art is not a “religious” person, but is one of the most honest and decent people I know.  He told me that he understands why a caregiver would desire to move on.  It is hard, lonely, and often hopeless.

Art felt that he was committed to mom and  needed to be there for her.  The difficulty of the task was secondary to his primary commitment to mother.  She was vulnerable and he was compelled to take care of her.  I have the deepest respect for him and other caregivers that chose to take care of their loved ones. 

As Alzheimer’s clouds a loved one’s mind, they need their life partners around them more than ever.  It was remarkable how much mom relied on her partner all the way to the end.

Hang in there caregivers! 

As my attention was fully directed at the vehicle preventing me from continuing on my way, I noticed the driver car door open and an elderly gentleman emerge as traffic passed by him.  I thought the car stalled, but as I got out to help, I realized this poor fellow had no idea what was going on.  It was quickly obvious he had dementia because he could not tell me his name, where he lived, or why he stopped in the middle of the road.  A couple of other drivers stopped and when law enforcement arrived, we pushed the vehicle out of traffic.  The officer found the gentleman’s ID and started the process of finding his family.   His answer to all my questions was the same, “I don’t know.”

A few years after this encounter mom would call and say someone stole her car while at the mall or grocery store.  The car was, of course, right where mom left it, she just forgot.

We talked to Art about the concern of mom driving and, like most spouses, he was reluctant to take this away from her.  Spouses typically are slow to take away the keys.  Part is denial and part is a burning desire to let them continue in hopes things will improve.  It is hard to take away a loved ones driving privilege.  It went on a few months for mom, but her overall condition was getting worse and it became quite clear that she was a risk to herself and others.

The Mayo doctor told us that she must stop driving and I think that was the final point that helped Art accept that mom needed to stop driving.  Once he accepted it, he put her car up for sale and it sold quickly.  Mom asked about her car for a few weeks, but then the memory of it was lost.

The keys still needed to be hidden because she would get them and say she was leaving.  Mom was a wanderer and always wanted to go home, but that is another story.

Caregivers, this is a monumental decision  that you must make.  It is hard, but imagine your loved one stopped on a busy street, scared and confused.  Imagine if they wreck and hurt themselves or someone else.  I can assure you that you will regret not taking away the keys.

There is not much easy about caregiving and removing driving privilege is no exception, but you must.  Remember, the caregiver can be held legally responsible if there is an accident related to an impaired loved one driving.  The doctor will likely be contacted and report that the caregiver was told to stop letting the loved one drive.  Do not add this stressor  to the long-term  stress of caring for a loved one with dementia.