The Next Step in Trading Places

The healing process folds around a multitude of emotions and for each of us it is a unique mixture. Among them is the frustration with where to put all of it and to make sense of it. This is no easy thing to do. In the months or years following a parent’s death, we have all of those things to do that are about the end of their lives and the closing of those doors is focused on them, sometimes to the exclusion of where we are in healing ourselves and those around us. We are “trading places” again as we move into the next stages of our lives.

It occurred to me that I should use this time to write reflectively about our loss, the recent loss of our mother and the not so recent loss of our father. I was not sure where to begin, but felt strongly that this would help me to put things into perspective and help both me and my son heal and arrive whole at some new place in our lives. I decided to write reflectively for a year and at the end of the year, bind all that I had into a book for my son and give it to him. It would not be intended as a Christmas gift or a birthday present, rather as a guide to help him place life into meaning and when my time comes, to understand that we added a worthy dimension to our lives by examining this time and living its value. As with all things desired with great purpose, the universe supplied me with my first opportunity to reflect.

On March 25th, the heel of winter left its final footprint in the form of a crushing ice storm that would leave much of Iowa without power and schools closed for up to five days. It began on a Friday night and lasted well into Sunday for us; we were some of the more fortunate ones with our power returning late Sunday night.
Our power had been intermittent on Friday but without any major interruption. Saturday would prove different. Our power failed in the early morning and left our house silent. Our cell phones still worked and we were able to call others for weather reports to fill in the gaps from our weather radio, but by Saturday night we were no longer able to find a signal strong enough to call out.

We are a household that is deeply entrenched in the Internet. I am an instructor at a local community college and my son is involved in a local theatre group, regularly visits iTunes and we both have our own websites and webfolios. We love movies and DVD sets and are currently both hooked on Monk and the 4400 in addition to The Office and House, my personal favorite. We had always welcomed the occasional snowstorm that would leave us stranded for a day or two and would frequently have a DVD fest as the snow piled up around us, but we had never been without power or at least not for long. This storm would be different.

As the night grew darker and quieter than it had ever been, the house temperature hovered around 45 degrees. The wind seemed to gust in waves and when the big waves hit they snapped the branches of the trees encased in as much as two inches of ice. We heard them crash to the ground and against the house. Repairs, we understood, would be some distance and time away.
We played board games, cards, and slowly realized how much of our lives were dependent on electricity and all that it brings as the candle light danced in the draftiness of an old farm house. Near 10:00 PM, I told my son that we would have to pile more quits onto my bed and that we would have to sleep in the same bed to stay warm. If he would have been 6 years old, this would not have been a problem, but try this with a teenager. I promised to pay for the therapy later.

Neither of us could sleep between the wind, the trees breaking and falling in the grove and around our house and the lack of the last television program or DVD before bedtime. As we huddled under the covers, my son had an idea that he thought would help take our minds off the storm. He got his video iPOD and plugged one earpiece into his right ear and the other one into my left ear. We were almost nose to nose and not able to wiggle much or we would easily disconnect ourselves. We listened to his David Cross CD that he had put it on his iPOD. As we listened, I could not help but look at his face and into his eyes. As he laughed I could see how his eyes crinkled, pulling his eyebrows down and making his cheeks rise; the future of his laugh lines already becoming etched on his face and I felt that I was discovering him, seeing into his soul. We listened and laughed and looked. As the night wore on, his eyes struggled against the storm and David Cross and sleep. I watched as his eyes finally closed and his breathing slowed to a peaceful sleep. I continued to listen to David Cross until my son rolled over and popped the earpiece out of my ear.

The storm returned and with it, my first reflection. During the last week of my mother’s life, I had looked at her, taken the time to see her face, her eyes, listen to her words and saw each wrinkle on her face move against the range of emotions of the end of her life. Why did it take the end of a person’s life to make me aware of her all over again and what had I missed? What had we both missed? The winter ice storm had circled me back to that lesson of life that had presented itself there. I hadn’t recognized it then, but looking into my son’s eyes, reminded me and now I had to put some words to it to make the meaning of the experience.

I made a promise to myself then. I promised to keep looking and seeing, to take the time to look into the faces of those whom I love and to see what lies there. Each experience yields a new depth of understanding and the time that my son and I spent plugged into David Cross, laughing and looking into each other’s faces, I hope will become one of my last memories when this part of my life closes. Joseph Campbell in his wonderful interviews with Bill Moyers, tells us when we die we will be in such awe of God that we had better be living our “bliss” in this life. Perhaps among those things that we would include as part of that “bliss” is taking the time to look at one another and pause in that looking long enough to really see who is there and to know them, to reflect on who they are and how important they are to us. There are times since the ice storm that I have taken the time to look into my son’s eyes as we talk. I love the changing landscape of his face and sometimes it is just a good feeling that I am left with. I can’t imagine going without it now and am thankful for the reflection that leads to more of what life had really intended for us.

I have written other reflections and eagerly recognize them as the next emerging lesson designed by the universe with some guiding purpose that I must discover and more importantly, pass on. It really is as simple as that. It will come to you if you open yourself up to it. For many of us, we became or are or were so immersed in caring for our parents that we had little time to reflect. Reflection, I have found, takes us on a journey and creates empathy, growing meaning in our lives. This is my inheritance.

Dear Brian,
I loved the Trading Places series, but neglected to write down some information that was pertinent. My father-in-law was a Korean War Vet and has sinced passed away. My mother-in-law has become very ill in the past two years and the family is actively considering nursing home care for her. I remember during a particular segment of this series that there were benefits available for surviving spouses of wartime veterans in regards to nursing home care. Could you or anyone else lead me in the right direction for us to be able to apply for this benefit?

My mother, one of the greatest of all generations, didn't have long term care insurance. I didn't want to but had to put her on medicaid.

She gave so much of herself to her family. I flew back and forth to see her; cherishing all moments spent together. I would continue to do so in a heartbeat if I only still had her.

A few things she enjoyed most were: having her hair combed, a smile, holding a lap dog or sitting beside her in the sun of the retirement home.

As a nation, we have neglected our elderly. All monies from medicaid should go to our legal, elderly citizens. May God have mercy on those who never visit, send cards, or spend quality time with loving parents who worked so hard and sacrificed for their families and their nation.

Mr. Williams....with great interest I watched a number of the Nightly News "Trading Places" segments, as well as reading some of the personal emails you received from your viewers. Due to our own tragic family experience, I cannot help but wonder how many people do not realize how often elder abuse not only takes place & not reported or is misunderstood & certain aspects extremely difficult (in some states) to prove.

Below is a small portion of some of the research we compiled over the last year and a half:

Every year an estimated 2.1 million older Americans are victims of physical, psychological, or other forms of abuse and neglect. However, it is suspected that for every case of elder abuse and neglect that is reported to authorities, experts estimate there may be as many as five cases that have not been reported. Elder abuse is a complex problem, and it is easy for people to have misconceptions about it, many times connecting it to older people living in nursing homes or elderly individuals living alone and never having visitors. Although such abuse does exist, most incidents of elder abuse don’t happen in a nursing home and is not the most common type of elder abuse.

Most elder abuse and neglect takes place at home. The great majority of older people live on their own or with their spouses, children, siblings, or other relatives – not in institutional settings. When elder abuse happens, family, other household members, and paid caregivers usually are the abusers. Although there are extreme cases of elder abuse, often the abuse is subtle, and the distinction between normal interpersonal stress and abuse is not always easy to discern.

One definition of elder abuse reads: “the infliction of physical, emotional, or psychological harm on an older adult. Elder abuse also can take the form of financial exploitation or intentional or unintentional neglect of an older adult by the caregiver.”

Although, (when still having having access to visit/talk on the phone w/our Mother) we began to (and continue to) have concerns regarding emotional or psychological abuse. A definition for this: “can range from name calling, giving the “silent treatment” to intimidating and threatening the individual. When a family member, a caregiver, or other person behaves in a way that causes fear, mental anguish, and emotional pain or distress, the behavior can be regarded as abusive. Emotional and psychological abuse can include insults and threats and also include treating the older person like a child and isolating the person from family, friends and regular activities – either by force of threats or through manipulation”.

Many of the above mentioned tactics have been used within the residence where our Mother originally chose and continues to live. Additionally, we had/have concerns of financial exploitation (defined as) “can range from misuse of an elder’s funds to embezzlement. Includes fraud, taking money under false pretenses, forgery, forced property transfers, purchasing expensives items with the older person’s money without the older person’s knowledge or permission, or denying the older person access to his or her own funds or home. It includes the improper use of legal guardianship arrangements, powers of attorney, or conservatorships. Also includes a variety of scams perpetrated by sales people for health-relate services, mortgage companies, and financial manager – or even by so-called friends”.

This is as it turns out, is even more difficult to prove especially when individuals are very good at utilizing some of the previous mentioned tactics of threats, manipulation, emotional distress. Often one only needs to mention "going to a nursing home" and the elder person will end up doing or saying whatever is required.

Below is a portion of the Iowa Code regarding elder abuse. Relating to possible misuse of their funds, please note section (c). With the clause "without the informed consent of the dependent adult", by once again using threats, manipulation, inflicting fear & suspiscion, an unscrupulous individual can gain easily gain (legally) the consent of the elerly person but actually taking unfair advantage" of this person.

Chapter 235B of the Iowa Code
235B.2 Definitions.

5. a. "Dependent adult abuse" means:
(1) Any of the following as a result of the willful or negligent acts or omissions of a caretaker:
(a) Physical injury to, or injury which is at a variance with the history given of the injury, or unreasonable confinement, unreasonable punishment, or assault of a dependent adult.
(b) The commission of a sexual offense under chapter 709 or section 726.2 with or against a dependent adult.
(c) Exploitation of a dependent adult which means the act or process of taking unfair advantage of a dependent adult or the adult's physical or financial resources for one's own personal or pecuniary profit, "without the informed consent of the dependent adult", including theft, by the use of undue influence, harassment, duress, deception, false representation, or false pretenses.

We have exhausted all possibilities to assist our Mother and the situation that exists for our family. We even attempted to petition for guardianship/conservatorship despite legal counsel that our chances for success was minimal in Iowa and it would be like going in and bombing Iraq (and we know all too well what that has been like). The petition was eventually withdrawn and to this day many of us are no longer allowed to visit or talk with our Mother on the phone, only cards and letters are allowed.

The reason I write this...as one indivivdual (from the State Department of Elder Affairs) indicated,it may be too late for our family, but perhaps somewhere, somehow we might be able to help educate others about this all too common occurance and the need for either better legislation and/or education for the various state agencies and legal systems.

Perhaps in the future this topic would be a possible consideration in conjunction w/your recent segment.

Sincerely,

Kathy Lourens

Please do not post this email address:
klourens@iowatelecom.net

Thanks for the excellent coverage of an emerging problem for many people.
I cared for my father-in-law for 13 years until his death in 1972. I was also able to help my mother during my father's long bout with emphesema. He died in 1983. Five years ago my mother became disfunctional with Alzheimer's and I was able to bring her to my home to again care for an aging parent. She died Dec. 1, 2006.
I feel qualified to say that the Alzheimer's was far more difficult to deal with than the physical disabilitied.
I wrote the following 2 poems during these times of learning to deal with the problems of caring for another person.

Letting Go

Dad didn't want to live in the nursing home
so he's been with us twelve and a half years.
When he was nine he could make a pie---
peach pie was his best, he says.
Peach cider, too, using a press.

He didn't want to be a bother.
He could always take care of himself.
Now he suddenly can't.
"Can't even go to the toilet alone!"
God, he hates it.

The nursing home cost too much.
The state would have helped some---
Sixty-three seventy-five for meds.
Then keeping them straight!
Mixing them up can be bad.

Once he did---what a scare!
He liked to do it himself.
But, now, with eight different kinds!
"Can't even pay my own way anymore!"
God, that worries him.

He likes to help out a couple of his sons,
when they turn up, broke.
He has a room to himself,
and a radio---he used to like books
but his old eyes went bad.

Sitting on his bed, using a bread board,
he taught his five grandsons how to clean a fish.
He talks a lot about the past.
Some things he wished he could do over.
God, he's a good man.

Always taking my side.
I'm his daughter-in-law.
Sometimes he wants to roll over and die,
but usually he knows how to laugh.
Our dog naps at his feet.

His mind's as sharp as a tack.
He used to have a couple of cronies visit.
Now, no one comes by but family,
and they, not nearly enough.
God, he's lonesome.

He needs help while eating, now.
We finally have to use hospital gowns.
We put it off as long as we could.
It's a matter of dignity to him.
He's begging to stay home.

No more hospitals---no more machines.
No more pulling him back---
no more forcing him to live.
It's time now. He's ready to go, God,
and we are ready to let him.

She Waits…

All the days are snowy cold
Shivering under the shawl;
All the nights are lonely
Quivering heart wondering who is there
And where we are.
The year of mothering my mother
As she waits for Daddy to return,
wonders where the kids have gone,
Asks, “Is it time to go to school?”
“I must have dreamed a scary dream,
Wondering … where am I?”
“Who is here?”
And in the silence she cries
“But who is talking, whispering, arguing?”
Her voice drones on in retrospect.
“I wonder when he’s coming,
It’s time to go. Hurry up.”
The stories twine in tangled knots,
Confused and undependable,
Names and dates forgotten
Bewilderment in turmoil.
Faces and figment inhabit her world
Where lives the memories of childhood.
Forlorn in yesterday’s grief
And tomorrow’s sorrow
She forgets how to sing.
And all the twain shall ever be
A long and lonely wait for her
As waiting time’s a puzzle
Of seasons and of hours
And seldom comes a caller
To break monotony.

Mr. Williams,
I want to thank you for bring the story of children caring for parents to the forefront.
I moved in with my parents 4 years ago to care for them. Due to the fact I could not keep up my place in the country and theirs I sold my house and property.
My Dad passed away in April so now it is just my Mother and me. I sometimes feel like I am the only one in this situation and I feel so alone. Then your story come along and helps me know there are more people out there.
Your feature is almost like a support group.
Thank you,

Dear Mr. Williams,

I am an only child and just within the past two to three years, my mother has talked briefly about what she would like to do. She was prepared financially for about anything, but assisted living and the possibility of having to go into a nursing home at sometime was something that neither of us ever even dreamt of until most recently. (As an only child, I have tried to give suggestions at times, but my mother is very set in her ways and "stubborn" so it has been difficult at best.)

My father passed away in 1991, and during their last few conversations, he gave Mom advice on how to handle everything. The only thing that he didn't advise her on was the home in which they had lived in. This has caused my mom a great deal of grief. She has handled it all well, but the house is too big, and with almost an acre of land (and God love her, she works that land), its getting more and more difficult for this dainty, little 86 year old woman who is losing her eyesight to macular degeneration (dry), so there isn't much that she can do about her sight. She still lives in the home and does the best she can.

I live in SD and she lives in CO. I try to visit her at least twice a year, and there are the almost weekly phone calls. I hear in her voice that she is ready to do something, but she doesn't know what to do. I have tried to make viable suggestions to her, but this is where she is very stubborn. She is afraid of most of the people around her. She says she just can't trust anyone, and her fear is that she will really have to leave the home that she has been in for so many years. She doesn't ever want to go to a nursing home, and I agree with that. She doesn't want to live with my husband and I in SD. She doesn't want to live in an assisted living home where she can't go out her own outside door. She doesn't want to play cards and bingo with residents. She just wants to plant a couple of plants outside her door and remain somewhat independent. She wants to cook her own meals and wants enough room to be able to entertain family. She doesn't want someone to make her bed or clean up after her. Oh the list goes on and on and on. It's scary, as the outcome doesn't look very promising at this point. I dwell on it all the time, in my mind, and I may be the one who will be having to move to assisted living because of the issues that keep coming up.

I wish someone could come up with an answer. The only problem is, I would most likely accept the answer, but my proud mother would see a flaw in it.

Thank you for letting me vent. It's hard for everyone who has to deal with this situation. I just wish I were fortunate enough to have a brother or sister to talk to about Mom.

Mr. Williams, I was happy to see the reports on caring for our parents. I have been giving seminars in differant locations in Wisconsin on this very topic. I address issues confronting those who are already struggling to find balance between caring for their family, their childern and work. Believe it or not there are answers to these problems. I have an overwhelming desire to help people make choices on these issues before marriages and family relationships are damaged or destroyed. In my experances I have witnessed both. I am a firm believer that with knowledge comes choices. I feel compelled to take the workshop nationwide. Do you know anyone who could provide support or guidance as I pursue this goal? Thank You.

It’s my mother’s 83rd birthday today. Normally her husband of 57 years, her six children and their spouses, 11 grandchildren, and 3 great grandchildren gather to celebrate it. This year will be different, however, due to her Alzheimer’s disease.
About 7 years ago, my mother’s macular degeneration forced her to give up her driver’s license. She and my dad live in rural location, so the fact that she wouldn’t be able to drive herself into her hometown about 40 miles away where most of her children live was severely depressing. She was always so strong, caring, and giving, so it was initially difficult for her to be the one in need. To help this situation, we purchased a very modest “fixer upper house” that we could afford so she would have a place to stay when she came to town where we could give her rides, and also to help her maintain a sense of independence. The house was structurally sound, but basically ugly. We saw the potential and all pitched in and within weeks we completely painted the inside and outside of the house and totally recarpeted and decorated it, transforming it into a charming and cozy home.
About 2 years ago my mother was diagnosed with Alzheimer’s and she has, of course, steadily declined, with her near blindness adding to the complications of the disease. As anyone who has dealt with Alzheimer’s patients knows, caring for them can be very difficult. Even though my dad is the same age as my mother, he is still very active; he is on his township board and is the road supervisor for the township, overseeing any of the repairs that the myriad of rural roads may need. To give my dad a break, we would have my mother stay in town about three days a week. In the last three months or so she has markedly worsened. Since August, one of us kids has been staying overnight with her while she was in town, and during the day we would visit and make her meals, but still leave her alone at times.
A few weeks ago, my dad became ill and at just about the same time he was unexpectedly brought in for surgery, my mother wandered away for the first time during the day. The neighbor knew where we worked, but he panicked and called the police. I just happened to drive up to her house at the same time the police had arrived. She had already been back in the house, but luckily I was able be there and explain the situation to the police before they barged in and scared her. Since that day, my five siblings and I have been taking turns staying with her 24/7 at her house in town, as my dad can’t care for her presently. We have been trying our best to work around our work schedules and have managed so far; one day we had eight different shifts. She has told us over the years that she would never want to end up in a nursing home, so we are doing out best to keep that from happening. Although she is in good physical health, her memory problems, hallucinations, and delusions make caring for her quite a challenge.
We try to keep our good humor and so far are doing OK, although, in the last few weeks we have also had quite a few mechanical failures to add to our fun. It all started with me flushing my cell phone down the toilet and plugging it. My brother had the start of an electrical fire at his house but luckily was home to stop it. Last week my dad’s TV broke so we had to get a new one to him, as with his recuperation he watches a lot of TV. The other day my mother’s washing machine in town broke, and this past weekend my dad’s septic system froze due to the weeks of below zero weather that we have had lately.
So this year on my mother’s birthday we will keep it very low key so as not to remind her of the lack of my dad’s presence. Unfortunately, we have to keep her from thinking about my dad, as he needs to recuperate from his surgery plus will likely need more surgery in the coming weeks. He has remained in high spirits and has been able to care for himself and we are all very optimistic about his health.

What a great series!!The best thing those of us who have been there can do is fight this "putting them in a home" mentality. It needs to be seen as being fortunate enough to find our parents a comfortable place to live where they get 24 hour care and safety. Safety is the issue with most of our elderly,and not worrying about what we will find on our daily visit. Your series greatly furthered this cause. I am too young to retire and take care of my Mother, and too old to re enter the work force after her passing. She could not be left alone, we had not choice other than an alzheimers facility. We were so greatful to find a facility with loving and caring caregivers.

In thirty days there were 2 major crises that changed my life: the loss of my dream job and the placement of my infirmed, aging mother, Nana. The job loss occurred in July 2005 and I thought I had lost everything. Just one month later I was hit with second crisis. My Mother, who had been living independently, had a serious fall and the hospital staff would not release her to live alone anymore. It was decided that I would be the primary caretaker for about two months. My mother was quite fragile, she had congestive heart failure, and her prognosis was pretty poor. How could I take this task on without a job? I was grieving my own job loss and worried about having adequate or nearby family support and financial resources. I had not even considered that God was about to take me on an amazing journey of spiritual growth and a new appreciation for my mother.
During this time I recorded my feelings and events in a journal. Now, about 14 months later I’ve experienced such closure and peace in my life journey, and I value my relationships with my family and friends much more than before. I learned what it would take to sever the ties that bound me to a job and how trivial it was in comparison to what I was allowed to experiencegiving care to my mother. Most importantly, I learned my life lessons through giving. I gave myself to my mother, Nana, as my husband and I became her primary caregiver throughout the year.
By writing about our experiences, I incorporated journaling, anecdotal notes, personal discussions, end of life events and life lessons into one story. All of this writing chronicled my transformation into the person I am today spiritually, emotionally and professionally.I learned some simple truths about myself. I learned that losing something like a job is nothing. The loss of the human spirit is immeasurable.
I learned that my Nana validated me in a way that I had never experienced. As young children some of us question how important, or whether we are important to our parents. When I gave total care to Nana, I learned that it is never too late to validate. I felt validated even at this age of 57 years old.
Another lesson that I learned is that when my mom said just two little words, "I'm sorry" that it took 27 years for her to say, those two words cured me of any pain or resentment that I ever had toward her.
She taught me other lessons, but I remember the last few days of her life. We knew she was dying because the angels from hospice helped to see this. But, as I wondered how long this agonizing period would be, I discovered she had one more lesson to teach me. I was able to make a promise to her that I would continue to love the people she loved, especially my own brothers. I knew that was my last lesson. She died a few days later, but her spirit is still with us.

Thanks for your covering a story of this magnitude. It reminds those of us in the "trenches" that we are NOT alone.
We are currently taking care of my 86 year old father, who has Altzheimers. We moved him into our home in the summer of 2005, as he lived alone (my mom died in 1994, one week after our twin daughters were born). It was a blessing that he moved in with us, because, unknown to any of us, including my dad, he had colon cancer.
To make a long story short, we have a full plate, as many folks do. Some of our friends and relatives think we are taking on too much...caring for him as well as being the parents of two special needs children. Our 12 year old twin daughters have an auditory processing disorder which affects their speech and cognitive developement. Botton line, Mr. Williams, is that we are doing the best we can. Dad is a proud man, a WWII veteran who saw action in Europe as a part of one of the first African American units to fight in combat in the European theater. He is also a retired engineer, who was one of the first black engineers employed by the Norfolk Naval Shipyard. But most of all, we love him and want to do what is best for him for as long as we can. He attends an adult day care facility most of the week.
The challenge that many of us have is that we want to have control of our loved one's care as long as we can. My dad has a fairly good retirement income, but not great enough for the kind of care I would feel comfortable in him having at at nursing home. I have also heard many horror stories. Many times, once they are in a nursing facility, especially an "Altzheimers' Wing", anything can happen. There are so many cases where patients take clothing and other belongings from one another and the nurses cannot force the patient to take their medication. They also wander into each other's rooms and beds. They sometime physically fight one another. Those are some of the reasons why we want him with us. We also believe that we should care for him simply because he is my father.
It is indeed a major balancing act....with special needs children, dad, careers, son in college, etc. We will be moving soon, into a larger home, so that we have more room. Dad will have his own bathroom (we won't have to share a bathroom with him)which will be fully handicapped assessible. Trust me, I can't even leave my toothbrush in the bathroom, because he will use it. So we keep most of our personal items in our bedroom. Although I still consider my husband and I as "newbies" in dealing with an elderly parent deteriorating in health, I can make the following suggestions to anyone who might read this:

* If your parent or family member lives with you, get them enrolled in a good senior day facility.
* Don't keep things bottled up inside....talk to people. It is theraputic and so many will understand. You can also get helpful tips from others who have "worn the shoes" as you do now.
* Try to check them into a weekend home that you trust so that you can have a break one in a while. Also, check into "respite" care, which I am pursuing at this time. Your county, district, or state should supply assistance in this area.
* If you don't have a sense of humor, find one (smiles). If you have co-workers that will understand, tell them sometimes of your experiences with your loved one, which may help you laugh or get the release you need.
* Join a support group if you can.
* Spend time with your children, because they need you too!
* Try, as this can be hard, especially if you do not have a baby sitter, to periodically have a "date" with your spouse. This almost never happens with us, but we do try.
* Remember that you are NOT alone....and remember that you will know when you can't do what you are doing anymore.
* Take care of yourself....eat right, exercise, etc. The stress is very, very GREAT and we as caregivers are going through alot. We have to stay on top of all of OUR medical appointments as well.
* Remember that it is normal to feel a variety of emotions....I was much closer to my mom and sometimes, I get frustrated with my dad because he is NOT mom. He can also be very stubborn and irritating. It is normal to feel frustration with them....but hang in there...you may need to go outstide a "kick a tree" sometimes (smiles).
* Pray!!!! Our faith helps to give us the strength we need. My husband also pastors a small congregation and I am a gospel choir director and just recently, a gospel music recording artist. Our faith and our music also strengthens us tremendously.
Mr. Williams, if you read this, thanks for taking the time to do so. For all of you, may God bless you and strengthen you. I hope and pray that I will not be a burden to my children someday. But we have a 50/50 chance of this and those who have Altzheimers in our families, we may find ourselves as our loved ones are now. I pray that this won't happen, and God willing, it won't. Again, bless you for all you are doing to take are of your loved one. And those with special children like ours as well, you are blessed, because you are loved more than you can ever know!!!

I must be computer challenged because I couldn't put my parents' story on the website, so here it is in the short form that was requested. I know that every person who is touched by dementia/Alzheimers has a story...this is just ours.-->

About 3 yrs ago, my mother was diagnosed w/ dementia w/ anxiety and paranoia as indicators. Dad had previously been diagnosed w/ Alzheimer's. Within 6 mos, my parents came to the decision w/ input from my brother and me to move closer to me (Sun City to Mesa). We bought a home (June) in a sr living comm; and proceeded to renovate the house (done by Sept) to meet Mom's expectations. During July, she was re-hospitalized. I drove 50 mi ea way per day to my teaching job. I cared for Mom and Dad--luckily, I haven't got a family to rely upon me....is that lucky??? At any rate, Dad and I packed up the house and moved everything across the valley. By Oct, we three were living together in their home. I couldn't leave them alone at night because they were confused and needed help. Each a.m. I arose @ 5 a.m. to drive to my home, get ready for the day, only to return to them to prepare dinner. Not bad--until the morning that Mom went on a 'walk-about'. She didn't know me or Dad. Due to insurance, which hadn't transferred upon their move (had to get a new one), I drove Mom back to the other side of the Valley to the hospital. All sorts of excitement ensued! She remained in the hospital for apx 1 mo. Dad & I drove the 100+ mi journey often during the wk to see her. When Mom was released, she needed to go to an assisted living location. During all this, Dad relied on me for everyday things, but he was still able to remain on his own. They lived apart for about 5 mos until I decided that they needed to be together. Mom had improved to the pt where she was again able to care for all her needs, and carry on a lucid, well-thought conversations, but she still believed she could live on her own. I learned the hard way before that she wouldn't eat properly or take her medications! When these things didn't happen, she ended up back in the hospital. And Dad? He was lonely! So, I found a great assisted living facility, which was all inclusive (rent, meals, transportation, staff assistance, etc.) in a small apartment setting. In each instance, the living facilities are 'secure'--coded entry/exit. Mom & Dad remained there until June when Mom again had an 'episode'. She was again hospitalized. The facility would not allow her to return due to her 'behavior'...which w/ Alzheimer's and dementia clients is usually extremely variable and sometimes even aggressive. It must be said, that luckily, Mom & Dad had the wherewithal to pay their way independently, which many people are unable to do. Under-the-gun again, I found another facility where they have been living since. Dad has begun to be increasingly confused; he doesn't remember that he lives at this new place. Mom hated it; it wasn't her own home. Thru it all, I've called nearly daily & taken them out at least 2x a wk. In Jan, she was again hospitalized for meds adjustments. She got pneumonia; she died 1/28. The only good thing I can say about Alzheimer's--Dad doesn't remember that Mom's no longer w/ us.

Dear Brian
I just wanted to tell you about our situation- perhaps it will appeal to some of your viewers. My parents lived in a two story farmhouse since 1976 -with a couple of acres- my mom could finally have her dream life of horses and a whole menagerie of goats, chickens, even a pet pig. They were in their 50's when they purchased the "farm" as it is lovingly referred to. In 1991, when they reached their 70's , they approached all my brothers and sisters to ask if anyone would be interested in purchasing the place at a fair price, with the stipulation that they continue to live there. Mom just wasn't ready for an old folk's home at that point- they loved their home but the upkeep was getting to be too much. Out of all 9 siblings- my husband and I were the only ones it would really have been an option for. I am an LPN and Tom partners in an Asphalt business with his cousin. We sold our home within 3 days of putting it on the market and moved into mom and dad's house with our three boys- aged 13, 5 and 2 yrs. We immediately started construction on an L - shaped 900 sq ft addition that included a bathroom and open kitchen, living and bedroom complete with a fireplace. My mom designed it to fit all of the pieces of furniture that had sentimental value from the house- the rest she gave to family. Mom and dad moved into the addition 3 months later and we've been here ever since. My children had the benefit of growing up in the "country" and enjoying the companionship of my parents on a daily basis. My boys especially looked forward to the nightly chess games with Grandma. The addition with a separate entrance gave us all the privacy we needed. Mom was diagnosed with advanced lung cancer in December 1998 and passed away quietly in her home 6 weeks later, surrounded by her family. The living arrangement we had enjoyed together for 8 years made it possible for me to care for her in the end on a daily basis- never having to worry about nights alone for her and dad or spending time away from my own family to care for her. It has been another 8 years since mom passed. Dad still lives in the addition and just celebrated his 83 rd birthday. Living here has kept his independence level optimum. He stills cooks for himself and I have the peace of knowing he's not burning his house down. He golfs during the summer and occasionally rides the mower! If he needs me( he's had some heart and stomach surgeries) or if he's ill- I can be right here with him and still be with my husband. I'm not saying we didn't have our share of disagreements but somehow it works. My siblings are still available for any help I need- and my family has remained very, very close. I have to say, you need a wonderfully supportive spouse to be able to do something like this, but it may be an option for other families out there. Hope this helps- Thanks, Liz McDermott

Brian,Thank you for giving attention to this subject.My Mom and Dad Took such good care of us when we were children.My sister and her husband allowed our parents to move in with them several years ago.My Mom had parkinsons and got to where she could'nt walk.So they moved in with her.I helped my sister and Father take care of her for 5 years at her home.We ended up putting her in the nursing home.My Mom had a great memory.She could tell you things that you would never be able to remember.We dedicated our time to our mom.I would stay for about 8 hrs a day my Father dedicated about all of his time too.We made wonderful friends with the staff at Hidden Acres Nursing Home.We would see from day to day the residents that never had anyone visit them.I believe that if you make yourself seen often.The less chance they will be abused.My mom passed away March 13th of 06.She was so loved and very missed.My father is 76 years old still living with my sister.He is a preacher has been one for 50 years.He was diagonised in 92 in the last stages of Prostate Cancer.Yes he is really a miracle.He still drives Visists the sick and Preaches.He also works for Hospice.I believe he was kept here to help take care of my Mom.I think it Kept him strong.They almost made it to 50 years.I would like to tell you we never regreated one moment of it.Amy May

Brian Willians
I know you cannot send a reply to all of the e-mail you receive, I saw all of the shows about trading places, I was surprised that none of the elderly were Alzheimer's Disease Suffers on those shows. For 16 years I have been an Advocate for Alzheimer's Disease. Recently I found place that would make stick on decals. So I used some of the little bit funds that I have and had them make them up for me. Iwould like to have your P.O. mailing address so I can send some of them to you and hopefully you could get some of the people that appeared on your show to put them on their cars, to help make the world more aware of what a horritic Disease that it is.
Ernie Pinti

Hi - I have been following your segments on Aging Parents and the various issues that arise. One of the best suggestions that I can offer to families is to find a support group( either time limited or ongoing) that deals with all of these issues. Here at Chilton Memorial Hospital in Pompton Plains, New Jersey, I co-facilitate an education & support group called "Your Aging Parent & You". It is a 5 week education/support group that allows caregivers to get a ton of valuable information/ resources, while also giving them the opportunity to discuss the stressors of caring for their parents. We also put them through a simulation of aging so they see from their parents eyes what is happening.

It would be a good idea for you to list these types of groups on your web site for people to get further information on this growing topic. Hopefully caregivers will be able to get the help that they need to help alleviate some of thier stress.

Brian, it so nice to have such great reporting on issues that really matter. Your series on trading places is wonderful and wrenching at the same time. Having a gradmother who still lives at home at the age of 96 and a mother who has just begun her goldne years at 70. It is hard on whole families to see that our elderly get the care that they deserve. My mother has had to go through so many leaps and bounds just to get the care my granmother needs. Using state given healthcare aids, that at times can be unreliable. Luckly we are a close knit family and still live close enough, that my Mom can cover for any shortages. I worry though about the emotional health of her and the rest of the family. As average middle class families we all pitch in to help our elderly. My Uncle even flies in from Minnesota from time to time. To give Mom a break. Elder care can zap the family economically too. We have had to place a reverse morgage on my Grandmothers home to make ends meete and it takes thousands of dollars out of my Moms' and Uncles' savings as well.

It's not surprising that you were flooded with e-mails about your series on caregiving. Our ranks are legion, and it's past time for our situation to be examined rather than hidden as it is now. As the wife of someone with late stage MS, I am determined to keep my husband at home. Few can imagine the roadblocks I face to securing the relatively little support I need to continue having a life together without burning out. Of course the nursing home industry would be urging people not to put their loved ones at risk by keeping them at home! That both insults and infuriates me. Please keep on this story as doggedly as you have on Katrina. It is a much subtler tragedy, but a far more expansive one.

Thank you for this important story.

My sisters and I are dealing with the challenges of our 86-year old mom, living "the long good-bye." Thankfully she had the insight to purchase LTC coverage which allows her to stay in her home with the assistance of two very talented, very compassionate aides. We are fortunate, and we know it.

My frustration is with a health-care system that seems designed to confuse and deny rather than empower and dignify an entire population whose only "crime" appears to be they have lived too long.

Thank you, again. I'm looking forward to seeing more on this.

Dear Mr. Williams:

I have a nickname for you: Mr. Breath of Fresh Air, which, I guess, would make you BOFA. Better than sofa. Bofa Williams. Mr. Bofa Williams. Anyway ... (too much wine). I've written before, and you have kindly run my off-the-wall "2 cents" (badly mixed, sorry) verbatim along with the link to my website. For this I thank you. I'm a 100 percent psychologically disabled vet, having found a bad spot to be in during the Ethiopia/Eritrea civil war during my tour from 73-74. I was drafted in 1972. I wanted to be an artist and a poet. So they groomed me for radio and field intelligence work and said, go do your hippy, Bohemian thing on some of this.

After 9-11, being a Vietnam-era vet, for the very first time, meant something to other people, so I got a real boost ... and I got kinda manic ... all in the interest of protecting my family against an enemy that had not really manifested itself around our house. This was December of 2001. My journey back, which has involved intensive therapy, for childhood and miltary issues, has sometimes nauseated me for weeks at a time. I could explain. A story on drafted vets during that era, who suffered with having been traumatized as children, and therefore not suitable for military duty, I think would be apropos ... and probably pretty unique. But do not expect me to participate in your story. I would need wine. Lots of wine.

Though I struggle, I can and do get "in the zone" as a writer and work around my brain injury with medication, somehow tapping for the first time in my life into another part of my brain to achieve clarity. My latest work is relevant, I think, for sufferers of anxiety or panic attacks.

I don't mean to seem so mystical. I am a very rational man ... upon whom mysticism was forced, completely undesired by me. I just want to help.

Keep up the very excellent work, my friend.
Randall Carter Gray

Proof of God?
Proof of God is:

Being aware that assurance rather than madness is how the world generally — individually and collectively — responds to the inevitability of death. Only God, by mystical means, could and would accomplish this human condition among so many. And does.

Everyone’s afraid of death … until they realize that everyone else has to do it, too. And then death can become a curiosity, not necessarily something to dread. At any age.

We must learn to get our minds out of the coffin … where our minds will not be when we are reborn … and put our minds on the visionary destination of all that is true.

We know that evil and death exist (and coexist with love and life), and that evil and death exist purely and solely because of the freedom that must necessarily exist for true, unconditional love, authored by God, to exist.

We know that God must exist, and that God is good and love itself … because this arrangement of love would not be possible, would not be conceivable or ever conceivably conceived … if there was no God … and if any aspect of God was evil.

That awareness can turn profound fear and anxiety into a nagging (understandably) but inspirational awareness … that because there is birth … death, paradoxically, must be a good thing. To some, not all people, this is a logical conclusion. There is no other conclusion that can be reached but that God is present in the midst of death and life, in addition to being the author of the paradox that death can and does, in fact, mean life.

— rcg. For those who suffer from anxiety or panic attacks … this is a cause for relief and celebration.

My mother passed away just before Christmas 2006. For the last 15 years we made sure that she was seeing a doctor of internal medicine to coordinate her medical care. We took her to doctor appointments and provided a home for her when she was not well enough to live by herself, sometimes for 7 months at a time.
She lived 1 3/4 hours away from us where most of her sisters and brothers lived. My younger brother lived near by, but worked construction and an older brother lived over 3 hours away. We would often get phone calls when she was had trouble breathing. She had emphysema and COPD and changes in weather or stress would often leave her in distress. It was not uncommon to drive through good weather and bad at any hour of the night to get her to an emergency room for treatment. She smoked for over fifty years of her life and truthfully probably never quit, although with the emphysema she had limited her use of tobacco. Our lives changed when she came to live with us and sometimes not always in good ways. She felt comfortable enough to show us her suffering, her pain, and her fears. We never left her home alone, only when I was at work and I would call to see how she was doing. We found stores that had wheel chairs and took her shopping for clothes, grocery shopping and through the malls. It made her feel liberated to get out and look at the world.
In the last year of her life, she lost her sister. It was a significant loss and one that she would not survive. They were more than just sisters; they shared their weddings, the births of children, every Thanksgiving, the loss of their husbands, and they died within a month of one another. Both of them had said that they hoped that they would die first and not be left behind. They were so close that they could honestly say to one another that they didn't want to talk on the phone and not feel offended. And then there were those marathons that might follow the next day when they would remember for one another, keeping their minds agile and their friendship strong. They were fiercely independent and in their own homes they could manage anything with help from their children.
Mom went into the hospital for the last time on November 15th where they made every effort to help her recover, but her lungs were gone and she was in the last stages of emphysema. She was moved to a nursing home and stayed there for almost two weeks. I can't write what I feel about nursing homes here. It became apparent that Mom was dying and I made arrangements to take her to her home (1 3/4 hours away). My brothers came to take her home and I made arrangements to follow the next day with my son. If there is anything that I can offer on the care of a parent, it is to honor them to the end. We didn't know it then, but she only had days left to live rather than weeks and there were those who thought it foolish to move her at all. But we took her home to her home, with all of her memories about her and all of her things that embraced her, her life's story hanging on the walls and sitting on the shelves, she needed to be home to say goodbye. She was comfortable there and settled into the rhythm of her final days. Once there, she became our mother and grandmother again, displaying a sense of humor that entangled emotions and pulled reality apart. Hospice workers guided her and us through the final process; they are angels on earth. My Mom grieved for her husband one last time in a home that had only shared for eight months. He had been diagnosed with cancer and they moved from the farm that they rented for most of their lives.
Our Beagle really let us know when the time was near. Every time there was a change in her, he would make sure that we knew it. A barker by nature, we had considered not taking him with us, but he had become good buddies with her when she had lived with us. He loved to spoon with her on the couch and would crawl into bed with her and stay by her side during the day when we were gone. He never barked once from the minute we got home to help with her last days. Only after she was gone did he return to his old habit of announcing footsteps at the door. She passed away early in the morning on Friday Dec 16th. I often have told others that this was, in many ways, our best Christmas. We gave her her last wish on earth...to be home. Once there, we could see her personality surface and we got our mother back again.
It was important for my mother to remain in her own home as much as possible. She was happy there and healthier than she would have been in a nursing home. My mother did not have money and was on Medicaid and now the state where we live is poised to receive the bulk of her estate from the sale of her house and contents. If there is any insight here that might be of value, let it be this...we need reform to recognize that it is cheaper, better, healthier, and happier to keep our parents in their own homes as much as possible. The cost in savings to the Medicaid system in my mother's case was hundreds of thousands of dollars. We honored our mother and wanted her in her own home, doing everything possible to help her stay there safely. It took our savings, we have not had any vacations, it consumed our lives at times, but we have NO REGRETS.
I hope that my son will not have to care for me in the same way that we did for my mother. He is older than his 17 years and possesses a wisdom that comes from observation and sacrifice. He knows too well that life is fragile. He wants to be a writer some day and I feel certain that he will draw on these days for an occasional word now and then, and among them there may be some of hers.

I have enjoyed your stories on the care of the elderly. I felt fortunate that we have not experienced that problem with our own parents who lived into their late eighties. My wife's step mother just passed away at 101. She had been in a nursing home for six years and was mentally alert until the last. Fortunately there was money to take good care of her. I am 88 and my wife is 86 and still live on the farm where we moved 62 years ago. We have four childrenwho keep in contact. One son lives nearby and has taken over the farm operation. One is Montana and another in Washington state. We hope we do not become a problem. Fortunately there is money.

I am looking forward to the stories about people who do not have the financial resources as celebrities to care for their aging parents. I cared for my Dad for four years and now care for my Mom. The last 9 months of my 90 year-old Dad's life had to be in a nursing/rehab facility because he fractured his leg.
My Dad's stint in the nursing home was nightmare. I visited him each day and still after many of their mishaps, I had to hire a caregiver to keep an eye on their caregivers. Being an educator, I am very familiar with researching for help (or lack thereof) of resources available. Monthly private pay for a nursing home is $3000 to $4000/month and is considered on the cheap side. How long can the average person pay this amount, if at all?
Any proper, caring help, if you can find it, comes with a very high price. When is someone, somewhere in this country, going to be addressing these issues on Capitol Hill?

Thanks to NBC Nightly News with Brian Williams for the wonderful series on Trading Places: Caring for Your Parents. As we and our parents age, caregiving becomes an important concern and a major challenge to the baby boomer generation.
Tim Russert and the other celebrities are fortunate to have all the support and resources they need to help in the care of their parents.. However, most of us do not have that kind of luxury. Today’s boomers, for the most part, are responsible for the day-to-day care of their parents, not to mention, their children, as well.
The big question is, then, who cares for the caregiver?
I'm a licensed mental health counselor who sees the effects of overwhelm and overwork on my many clients, who are sandwiched between caring for their children and their aging parents. They are juggling too many roles, as spouse, parent, employee and caregiver. Unfortunately, there’s a point where it becomes too much to handle and it’s at that stage that they break down, emotionally and physically.
About 78 million baby boomers are experiencing this new role reversal responsibility. While NBC Nightly News should be commended for their efforts in bringing this issue to the forefront, what we need is more focus on viable solutions that the average family can depend on through these challenging times.

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