Trading Places: Personal stories from viewers

Submitted by Katie Rau My mother's care facility had a fashion show on Mother's Day that not only highlighted what the residents wore, but their lives before dementia.

I could write a book about caring for my parents; in fact, I would love to, in order to help people who are going through what I went through, just to let them know that they are not alone, at least one person has experienced the same emotions that they are going through. I would like to let them know that our parents should not be remembered by their actions now, but by who they were. I would like to let them know that even though some days seem to be at least 100 hours long, these days don't last forever, and when your parents die, they are gone forever, and you will want the 100 hour days back. I would like to let them know that it's OK to have some days that you actually want your parent to die, so that they don't have to suffer the indignities of dementia any longer. I would like to let them know that even though your parent may not realize it, you are their cheerleader, and if you don't fight for them, no one else will. I would like to let them know that even though there are caregivers for whom this is just a job for eight hours a day, there are caregivers for whom this is their passion, and these are the caregivers that you need to find--it is worth the hassle and the agony of trial and error. I would like to let them know that even when it seems that there aren't any options left, there is always an option, always a choice. I would like to let them know that not all hospice agencies are equal, that there are 24 hour hospice agencies, and this 24 hour service is vital to your sanity. I would like to let them know that even though your parent may not be the picture-perfect, sweet, aging parent, even if they are angry, violent, and unhappy with their situation, don't take it personally. Deep down, they appreciate every second that you spend with them, and you will never regret spending that time with them. I would like to let them know that, yes, caring for your parent is very, very hard, probably the hardest thing that you ever have to do, but you will never regret that you didn't try your best to help your parent. I would like to let them know that their best is different from anyone else's best, and that's OK. After your parent is gone, your memories of this caregiving time will cloud, and you will question yourself with countless would've-should've-could'ves, and you will have to remind yourself that you did your best. Your parent would want you to know that they are grateful and that they love you. And then I would write another book about the lighter side of dementia. There really are laughable times along with the sad times. These are the heartwarming stories of the people who live in the facility with your parent, of who they were and should be remembered as and not as the person defined by their dementia. And these are the funny stories of demented lives, because their actions can be comical--I would never ridicule or make of these wonderful people, but, like children, they can say the darndest things! --Katie Rau, Parker, TX (submitted on Feb. 21, 2007)

Six and a half years ago when my parents were no longer able to live alone, they sold their house, I sold my house, we bought a house together and merged three generations under one roof. The physical merger of three sets of lives (1. Mom and Dad; 2. myself and my teenage son; 3. my brother) and three sets of furniture was traumatic enough, but the emotional toll it has taken is beyond anything I could ever have imagined. As the oldest sibling and only breadwinner in the family, I suddenly found myself having to support both physically and emotionally two aging parents, a teenage (then college age, then law school student) son and a brother for whom employment had seldom been an option. I am a college professor, a single parent, and not one to back away from a challenge. But this is more than I bargained for. In retrospect, it was probably the worst decision we could have made, but the only one possible. We are not wealthy enough to afford assisted living for my parents and that option would have stranded my brother who had lived with my parents for decades. However, they left the only place they had ever known and moved to South Carolina where my job kept me. They lost their friends and their lives. My mother has lost all social contact (she is blind and physically not very mobile due to severe arthritis) and my Dad spends his day in front of the TV watching CSpan. This is a man who rode a horse every day until a hip replacement forced him to give it up in his eighties. He still plays golf occasionally, but only when either myself or my brother can accompany him--he can't play alone. I can't begin to describe the toll this has taken on me--it would take a book. What I do know is that there has to be a better solution. I have watched your series with great interest, but was disappointed that the stories you feature all show families with enough money to provide the very best of care outside of their own homes. How many thousands of people are there out there just like me, slugging away every day, being worn down to nothing by the sheer responsibility of such care-giving? We must be legion. The Greatest Generation is placing an unbearable burden on the Sandwich Generation. --Pat Pecoy, Greenville, SC (submitted on Feb. 21, 2007)

Both parents are 81, getting close to having to downsize for financial reasons. Should they do a reverse mortgage so they can stay at home longer(they have no home debt) or should they tap into a trust fund that up till now has been exclusively used by their 3 children. Did you know that there is actually an emerging discipline called "financial gerontology"(from the book called THE NUMBER,pg.107) ? I tell you I had been thinking of the trust fund as a nest egg for me, but they have every right to the funds. I am 53 and am thinking now how foolish my husband and I have been for not saving more on our own. Anyways, we are now as a family exploring what options my parents have. It really is just now striking me that they won't be able to be on their own forever. I mean coming to terms with what might be ineveitable, so many decisions and options, a lot to figure out. I think, as your stories have touched on, it is important that my parents be involved in the decision making process ,while they still have the cognitive ablities to consider their options and make choices. My husband and I have even considered moving in with them to care of them if they need full time help. It's not a question of if but when isn't it? Between my siblings and me, one of us visits our folks(in Miami Beach) once a month just to help out and check up on them. That's our plan for now. We are going to look at a retirement community tomorrow in Delray Beach. I live in Ohio, my brother in Atlanta and my sister in Vermont. I wish we lived closer to them. My mother is very independent and us kids joke that if they did get live-in help that Mom would end up waiting on them. My sister did find a certified gerontoligist practioneer of some sort that came to my folks home and did an evlaution of their ability to live on their own. Her conclusion was that they are just under the borderline of needing some assistance. My parents have stated they want to live in their house as long as possible. That being the case, the bottom line question is how long can they afford to do so and what support system needs to be in place to faciliate their desire? There is nothing I wouldn't do for my parents and I just want what is best for them. My Dad is pretty high maintenance and I see my mom as having a lot of caregiver stress. I am blessed to still have both of my parents living. They have had excellent medical care and a supplemental health care policy that they bought when they were in their 50's has eased the burden of what might otherwise have been overwhelming health care costs. Kudos for your "Trading Places" series. I've told all my friends about it , especially those coping with caring for a parent-which happens to be most of my friends! --Anonymous , AKRON, OH (submitted on Feb. 21, 2007)

My parents are 85 and 82. They have been married to each other for 64 years. Ever since he was in the army during WWII. Shortly after marrying, he went to Europe and she stayed behind. After the war he went to work with his father in the family small-town hardware store, then later also took on the dairy farm that had been in his mother's family. They had four daughters (no boys to help with the heavy farm work). The time has come when hard decisions need to be made. The two of them still live alone on the 160 acre farm, in a big old drafty house that has been in the family for 120 or so years. None of us want to see the farm sold, especially my dad. But none of us daughters are able to move in with them to take care of them. Living out on the farm will become only more difficult as we imagine it won't be long until my dad won't be able to drive anymore. Also the maintenance on the farm and the harsh Wisconsin winters are almost more than a YOUNG couple can manage. It would be so wonderful to see my folks go to an assisted living facility where they would be cared for as well as THEY have always cared for US. I've never known anyone else with such integrity, honesty, hard work ethic, and devotion to each other and to their faith. We pray that the right decisions will be made regarding the family farm and the care of the mom and dad who made it such a wonderful home for us to grow up in. --Gwen Odonnell, coeur d alene, ID (submitted on Feb. 21, 2007)

A problem that all children face when dealing with elderly parents is the "drivers license". Here in central New Jersey we are truly dependent upon our cars. Our parents realize that it is their lifeline and their symbol of independence. But, once the children realize that their parents should not be driving, how can you take away the drivers license without looking like a villian to your parent/s. I tried to work out an arrangement with my 89 year old mother who still lived alone in her own apartment. She would give up up drivers license and car and I would set up cabs and also have friends drive my mother around. That proved to be impossible. My mother would not even discuss the matter. I could see the deterioration in her driving capabilities, but she was adamant and refused to discuss the matter. I, in fact, talked to the State of New Jersey about this and they frankly refused to get involved. I had hoped to make the "amorphous" state the "bad guy", but they would have nothing to do with it. So, what to do? Fate intervened and my mother did have an accident which fortunately only caused property damage. But it did total her car and it did cause her to suffe minor physical injury. But, even at that, my mother was ready to get another car. Again, the lifeline to independence. Shortly thereafter my mother passed away so the problem (in my case) was solved. But, my points are - 1. Every state should start to test everyone over a certain age to determine their driving skills. 2. We truly need to revert back to better transportation systems in many areas of the country as our aging population becomes more and more dependent upon alternative means of transportation. Obviously, no easy answers, but these are just two of the many questions / problems that need to be addressed and addressed SOON! --Ernest Janssen, Colts Neck, NJ (submitted on Feb. 21, 2007)

My parents moved into a home we built on our property for them on 12/27/06. This was 2 1/2 years after we broke ground for the building and approximately 5 years after my mother was diagnosed with esophageal cancer. After extensive surgery and rehabilitation, Mom returned home to Dad who is the primary care giver. They came to the realization that with Mom's care and the care and upkeep of our childhood home, Dad just couldn't keep doing it. The building of the home on our property was a monumnetal project as my husband was the general contractor and because of the construction horror stories, he finished the framing, electrical, plumbing, siding, carpentry work all by himself. This project took an exceptional financial, personal and emotional toll on us, and I am in awe of my husband for doing this for my parents. It is now such a comfort to have them there with us. They have their own space, so they maintain their independence, and yet, in case of emergency, we are right there. I see so clearly the role reversal that is slowly taking place. I worry and care for my Mom and Dad as they did for me for so many years. My daughter, who is 16 will have a relationship with her grandparents that is exceptionally special. She also will be a great help when my father, who is now 85, will no longer be able to drive, as I am sure she will assume some of that responsibility. Again, I express the most gratitude to my husband, who took on this task for my parents. He treats them with the care, concern and compassion that one should have with their own parents. There were times during the stressful construction period that I thought he is just unbeleiveable, because of the vast sacrifices he made and for those sacrifices, I will be forever grateful. Many of the individual things he wanted to do have been put on hold, because of the financial aspects of building a home and the fact that he took 3 years out of his business where he did not work on anything else besides this project to make this happen for my parents. Currently, they are well at 82 and 85, but my Mom's surgical pain managment left her with limited use of her right leg and Dad has severe arthritis and Paget's dis ease in his hips, so getting around is more difficult for both of them. It is sad to watch them slow down, but now I am more convinced than ever that we made the right decision. They are at peace knowing we are so close and comforted by the fact that when one of them passes on, the other will never be alone, as we are right there. On February 15, 2007, they closed on the sale of their home. This ended a chapter in part of their lives and began a new one. They lived in our childhood home for 52 years, but according to them both, while they had some sentimental moments about selling and moving, the rewards of being with us, totally make up for any sad moments. --Susan Mead, highland, NY (submitted on Feb. 21, 2007)

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