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Hear the voice of consumers. Click on the links below to listen to stories directly from long-term care consumers.


Family and Consumer Stories

If you have a story you would like to share from your experience or a loved one's experience in a long-term care facility, please email info@theconsumervoice.org.

A story by Judith Mangum
Read Judith's story as a PDF here.

“On this tablet we can look up anything,” said the Activity Director.  “Here let me show you,” and he did! “Google, show me a pink bear.”  Well, imagine my surprise when up came a pink bear that was even moving! We both laughed at such an odd sight. All went fine until he had skipped down the hall and then abruptly turned around. WRONG MOVE for this pink bear. “Guess we better change sites before we wind up in trouble,” the A.D. uttered with a bit of a grin and a snicker.  Off we went into a new world …, the world of the internet. Read more...

I had, for quite a long time, been watching employees, on their breaks, take out their phones or their tablets and talk, look up something or, in one case, play games. I watched with much interest as smiles went from ear to ear and they seemed to relax, if only for those few minutes of internet.  MY curiosity had been peaked! One nurse, seeing my interest began to show me how to play a different type of solitaire (Spider) and I still am working on that one.  I watched as one worked those Hidden Object Finds.  They looked too hard for anyone, never mind me.  Guess what!  I not only do those silly object finds, I love doing them and do them very well too.

Now here is a real problem for me.  These tablets aren’t cheap and I am not rich.  How in the world am I to get one? Thinking for quite some time I found my out!  My friend in Maryland sent me money from time to time for me to have my favorite thing … barbequed chicken wings. Oh, how I love them, not only because they taste good, but because this special friend had made it possible. I began to save that money, which was not easy, no more wings for me! Not telling anyone what I was up to, I waited for the day to come when I told my friend I was ordering a new tablet. She was so excited to know this telling me how the world would open up to me. And then THAT question I knew would be asked was! “How are you affording this?” (Silence on the phone.) I put off answering for as long as possible and then said, “Well, you know all those times you sent money for wings? I sort of saved it and that is what I have now … “a chicken wing tablet.”! It isn’t as tasty as those other wings but certainly keeps me busy and occupied and I probably have seen the last of those wings too. No so.  She still sent me money from time to time for my wonderful wings. They are so tasty. Messy, but tasty, nonetheless.

I ordered the tablet I wanted from a local department store, gave my money to the person who put it on her credit card and waited, and waited, and waited. Guess what!? It was on backorder!! Ever want something so badly you could almost taste it! (not those chicken wings though) and learn you must wait what seems like an eternity.  The day came when she walked into the dining room smiling and handed me my long-awaited package. Opening it, I realized the contents would open up a new world for me, but to what extent I was not to learn until a while later as I played with this new THING that so wonderfully had entered my life.

Now let me tell you. My world did open up to me.  People that I knew for a long time but had lost touch with over the years were suddenly coming out of the woodwork. High school classmates, former neighbors, a teach from high school who had moved and lost touch with me, even a long-lost playmate from childhood. For Heaven’ sake, my mom made both of our tutus for our first grade play. You cannot get better than that.  Kathy and I grew up together, went everywhere together, slept at each others homes and knew about the other’s family just like we were related.  I found her on Facebook after an absence of 40 years. What a happy day that was and, oh my, talk of ladies talking the night away. I think we burned the midnight oil and the sun by day for quite awhile. She finally decided to visit and I anxiously awaited that day.

Before long I found a person from Queensland and sent her a friend request which she accepted. Now I don’t know anyone living in a long term care facility who can say that, but I can. Love it. There are so very many people out there who are ready to have you as a friend. No matter what you are going through, there is always someone that says, “I will pray for you.”  Or, if they have a need, they get on the net and they get needed prayers and, in some instances, receive just the right words for the situation. We become a type of family.  Family… What a great thing for those of us without one. Love that too.

I finally had my tablet and enjoyed it so much. Friends all over the United States and beyond were in touch making jokes, sending special items over the internet to be liked, commented on and then share with some other friends who might be blessed as much as we had been. I never stopped being amazed by what I learned and how much was out there for me to pick up and learn some more. Life and God had taken on a deeper and more personal meaning in my life.

AND THEN IT HAPPENED

I was in my room and was preparing to change clothes. My tablet slipped out of my hands, the screen hit the corner of my bedside dresser and BOOM, my world came to a resounding halt! I picked it up hoping that not much damage had been done … but it had. It was the stock market crash of 1920 all over again!!! I was on a desert island with no hope of rescue, no way to ever have another tablet in my life, not on the allowed money each month.  My world had changed.  MY friends had no idea why I was no longer on the net and I had no way to contact Kathy to see when she was coming for a visit.  That visit is still on hold. Vacations come but once a year.

To quote a nurse, I had “Tablet Withdrawal.” That sounds odd and funny at the same time but it was anything but. Now I consider myself a Christian and I try to love everyone and always find something good about each one whenever I see them. I just couldn’t seem to shake the fact that my world had changed so much all because my little part of modern technology had come to a screeching halt. I still read my Bible, searched the scriptures, prayed for myself and others as I had before but it was different.  I had a loss and didn’t know what to do to fix it.

I recently asked others how I acted without my tablet. Some said I was lonely, withdrawn, sad, anxious, and stayed in my room. Days were long, the nights longer. With no way to contact friends I became frustrated. Kathy had no way to contact me for directions nor did I have a way to send motel rates to her. You see, I failed to get her address or phone number. That won’t happen again. My roommate who is ill knew something was wrong but didn’t understand a table and its values. All she knew was I stayed in the room more. I still made sure her needs were taken care of and that she was OK but something was wrong. I had to put on a smile and be happy for the residents, which was probably good for me too, because they were used to it and expected nothing less. I couldn’t disappoint my friends, many of whom had only me to welcome them to another day made by God.

Still I wasn’t being truthful to them. They had never had a tablet and could not understand my loss, why it had meant so much to me and the emptiness I felt and the disjointment I had with my world. A Q, which is an aide who has trained to pass meds, said she feels my Post Traumatic Stress Disorder may have acted up due to this event and my feelings would have been worse due to that.

The first day I was irritable, nothing pleased me, and I was agitated like someone who has changed medicines. I was better after a few days. I was now emotional and cried a lot, felt emotionally on a rollercoaster, didn’t laugh as much but, with God, I still had his joy in my life because no matter what you go through He is there and will, if needed, carry you over the hard places. “Someone said, “We all go through hard days and it should never be made an issue.”

I was angry with myself for feeling like I did. My grumpiness was because I was flustered at not being able to stay in contact with my friends and the world, I felt cut off from things … this said by my Administrator. According to her, “I was on an island surrounded by sharks and couldn’t escape the depression.” Goodness, I was a real mess!!!

Now to my reason for writing this. Many individuals in long term care facilities have little or no family or visitors to speak of. I had a tablet that opened up the entire world to me and I am constantly amazed at what I read and learn on a daily basis. My friends from school, be it locally or college level, were only a tablet away from me as were my childhood friends, those I haven’t seen in more than 40 years. What a marvelous part of technology just waiting for me to purchase and get busy looking up those from the past.

I am asking for help from businesses that make tablets, organizations willing to get involved, and yes, even that individual who maybe wants to help but cannot do it on a large scale.  Residents need to have access to the world. It is out there. I know for I have experienced it first hand. Never again do I want to be without a way to communicate with those I love and care about. Life is a joy and one should feel as I did, a world at my feet and my Lord and Master in my heart to guide my every step. Once again my “chicken wing friend” came to my rescue and I have another one to replace the one I broke. I am fortunate to have her. But there are many, many out there who would benefit from the use of a tablet who have no way to obtain one. Please, won’t you reach into your hearts, then agree to help get those tablets out there? It is a monumental task I ask I realize, but, over time, I believe that it can be done. Please won’t you help? We residents thank you one and all.

                                                                                                                                                Judith Mangum… Resident

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A story by Jane Overby, the daughter of nursing home resident Joan Ziebarth.
Read Jane's story as a PDF here.

My name is Joan Ziebarth and I died in a nursing home on August 12, 2016. I know this essay should come from me, but I trust my daughter, Jane Overby, to tell my story. Jane was a journalist and is very good at asking questions and is always writing down facts. I was in the care of a nursing home that was not too far from my home of 52 years in Minneapolis. Read more...

My husband, Mel, and I raised three children in that home and I cried when I had to leave. I was strapped into a van with a lift for my wheel chair, and driven away. My family did their best to decorate my room in assisted living, but it still felt like a dirty motel room. I’ve already said I cried about this frightening change in my life, but I also got angry with my family. It’s hard for me to say why, but a little part of me felt that they no longer loved me. The staff at the nursing home didn’t understand why I was so angry sometimes and they got frustrated with me. You asked what factors contribute to the quality of my life in a nursing home. My answer: I couldn’t be the first nursing home resident to have such intense feelings; I wish they would have been more understanding, or had a counselor on-site who would let me talk without judging me. 

I was in that place for 2 ½ years. One month after I moved in, my daughter got breast cancer. I begged her to let me take her to her chemotherapy sessions. She was a single mom with two little boys and needed my help. What was I thinking? I couldn’t drive. She would have to help me navigate the building from my wheelchair. I would be more of a burden than anything. I thought about how I nurtured her, my first child and only daughter, for so many years, and when she needed me most, I was trapped in that place. You asked what kinds of choices I should be able to make in my daily life. My answer: If one of my loved ones was facing a deadly illness, or if anything important was happening in my family, they should have helped me with transportation. They have several wheelchair vans, but they were reserved for residents who had doctor’s appointments. Often, those vans sat idle for days.  

Let me jump ahead to the care I received my last week in the nursing home, where I was then in longterm care. On Sunday, August 7, 2016, my husband noticed a rash on my arms and legs. He asked the nurses what it was and they said they didn’t know, but that they would monitor it. My husband called Jane, as he always did when something happened to me or my treatment changed. Jane came to the nursing home the next day, after lunchtime, so we could talk. She couldn’t find me in my room, and she couldn’t find me in the cafeteria. A member of the staff told her to look in a different cafeteria. 

Jane told me she found me, alone in that large room, asleep in my wheelchair at the lunch table, where I hadn’t touched my lunch. Jane took me back to my room where she looked at my rash. She said it looked more like I was bleeding under my skin, so she took pictures of my arms and legs. Then she gave my caregivers three clues: I had unusual fatigue, loss of appetite and a hemorrhagic rash on my body. In the coming days, the rash spread even more, and my husband kept asking the nurses “why?” By that 
time, I also had vomiting and bloody diarrhea for three days. That place called in a special nurse practitioner to see me. She had 30 years of experience working with the elderly. She determined my situation was not an emergency. One day later, I was sent to the Emergency Room in full septic shock. Jane and Mel were there, but I didn’t even know it because I think my brain had died by then, as had all the other vital organs in my body. There was one exception: a barely beating heart. I must have known I was dying, though, because my family saw me pull my IV out of my arm, and seconds later, I went limp. My life was over. 

They say in the movies that when you die, you can see your life behind you as you float from this life to whatever comes next. If that’s true, this is what I would have seen: my daughter and my husband crying. Then I saw more of my family come into the room, also crying. They asked “why?” My death certificate said I died of sepsis. 
You also asked:  What do you think it will take to bring about good quality care in nursing homes and other facilities? My answer: make sure the caregivers are trained.  Make sure they are compassionate. Make sure they pay attention. How was a nurse practitioner with decades of experience working with the elderly unable to diagnose sepsis? The rash was the first change in my condition and yet no one reported it to my doctor; no one thought it was important. My family and I were ignored for a week until I had only a few hours of my life left. I still had so many things to say. So many things that no one will ever hear. My daughter is now my voice. 
 
Footnote from Jane Overby: The Minnesota Department of Health determined my mother’s death due to nursing home negligence was “unsubstantiated.” I appealed their decision, with medical proof of how my mother died and why the nursing home was at fault. Again, “unsubstantiated,” according to the Minnesota Department of Health. I met with a representative of the Department in person to ask for further information about the lack of care she received the last week of her life. Still “unsubstantiated.”  You asked:  What do you think it will take to bring about good quality care in nursing homes and other facilities? My answer, on behalf of my mom: Clearly the State of Minnesota has a greater interest in protecting the nursing homes than it does in protecting their residents. This has got to change. 

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Medicaid Stories

The Medicaid program plays a critical role in providing long-term services and supports in our nation.  Consumer Voice is collecting stories from every state to deliver to members of Congress to let them know how important Medicaid is to consumers and their families.  Find more information about how to share your story here.  To learn more about why Medicaid is important to long-term care consumers, click here.

Is your state represented?

 

 

Linda Cezanne, New York, NY:

As my widowed mother aged she lived in a variety of settings from her own apartment to a senior housing complex to rehab facilities to an assisted living situation in the dementia unit. Her entire life's savings and her house went to her care. Read more...

One of the things that compelled me to place my mother in a particular assisted living home was the guarantee that, after her money ran out, she would be able to stay at the home utilizing a combination of social security and Medicaid.

Some homes I investigated merely stated that once her funds ran out they would "look for an appropriate new residence." I did not know what that meant and was very fearful that my mother would be uprooted abruptly and end up in an inferior surrounding where her care would, more likely than not, be much worse.

My mother paid $8,500 a month and her money went quickly. Were it not for her social security and Medicaid my sisters and I would have had to make arrangements for taking a fragile person out of a familiar surrounding with specialized care for dementia and the very old. My mother was 98 when she passed and I am grateful she was able to stay at the home she knew for a couple of years and with the people she grew comfortable with.

I simply cannot imagine what would have happened had we not had the ability to apply for Medicaid.

 

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Aundra Rhodes, Houston, TX:

My son, who is 44 years old, has had two strokes, one on each side of his body. As a result, he lost his ability to speak or care for himself. He requires complete care as he even lost his ability to sit up. He was first moved into a nursing home in January 2009. After I retired, I was able to bring him home in August 2011. I was delighted to have him at home so I could care for him. However, after two years, I was so burned out that I had to put him in a nursing home again. Fortunately, while he was home with me, Medicaid and Medicare paid for his care. But, now that he is back in a nursing home, Medicaid still pays for his care along with his social security disability check. I think that if I wasn't able to put him back in a nursing home, I would probably be dead from  the effects of burnout by now. Beside, I can't afford to pay for his care. I'm thankful that in this country, Medicaid pays for nursing home care, although the rules need better enforcement. Please keep Medicaid. 

Robin Guy, Rockville, MD:

 

Rita Morris, Birmingham, AL:

I am Rita Morris of Birmingham, Al. and proud daughter of Mrs. Katie.  I thank you in advance for your valuable time in allowing me to share my personal experience as a family member and consumer of  nursing home care with Medicaid.  At some point in our lives we will be a caregiver or in need of a caregiver.  I ask of you today to consider your family as I share a glimpse of ours.  I ask that you recognize your partnership with us. As Mother's caregiver of 14 years, an only child, wife, cancer survivor and mother, my hope was for quality of life, quality of care and peace of mind for all of us.  Nursing home care directly affects our loved ones as well as our families.  My mother became a widow at the age of 45; I was 16.  Out of necessity I quickly learned about our family finance needs and importance of health care.  Years later as a Registered Nurse, I was well aware that health care is driven by federal and state regulations.  When my Mother was diagnosed with vascular dementia, her life and our family's life changed.  At that time, I was a stay at home mom with a child in kindergarten. Our journey started at that time. We had many partners in caring for Mother along the way -   the Grace of God, family, friends, faith, Medicaid, Medicare, Social Security, and many wonderful health care providers - but our journey would have been completely different if not for Medicaid. Read more...

 As Mother's dementia advanced, her physical, mental and spiritual needs increased.  She was able to live in her home for two years with assistance, in our home for one  year with sitters, for four  years in specialty assisted living, and for seven  years in a  nursing home.   After four years in assisted living, the dementia had progressed and she required pureed food and more care. When this occurred, we were no longer eligible for assisted living. The next transition was to the nursing facility. I researched the regulations (OBRA) for nursing homes and Medicaid before we moved in. We were prepared.  The rules and regulations of Medicaid, Medicare and Social Security are clear in purpose and process.  They served our family as intended and were greatly needed.

In 2007 we were told that Mother could possibly live 6 months in the nursing home. We recognize and respect that the decisions for our federal funded health insurance programs are in the hands of our legislative partners.  Medicaid was the most life-enriching benefit that Mother received at her most vulnerable time.  She moved into the nursing facility in August of 2007. Her financial assets were depleted, her dementia had advanced, and she required care around the clock. Dementia symptoms were not limited to the hours of 8 am to 5 pm; they were around the clock for 24 hours.  I completed the Medicaid application with the online form and directions.  I submitted the form personally to our local office and received a follow up call three weeks later.  She moved into the nursing home in August 2007 and was approved by Medicaid retroactively in October 2007.

As a cancer survivor, my biggest fear was that I would no longer be there to care for her.  I often asked myself: Who would care for her in my absence? My hope was to be able to care for her as she did for me, my father, and my family: simply with love. Her focus was always on us; she did not focus on finances, insurance or direct care.  Medicaid provided Mother with the 24 hour a day care that she needed, the necessities that she required, and a state surveyor to monitor the care and assure that the facility was in compliance with the regulations. As an only child, I had peace of mind knowing that in the event of my absence, her care would be paid for and she would get the care she needed, with protection and oversight.  

As a result of the necessities and protections Medicaid provides, my Mother lived an additional seven years with respect, dignity, and quality of care and quality of life. Her wishes were simple.  She used to say, "I don't want to be the one someone would see and say 'that poor thing' "and "I don't want to be a burden on you." She was never in a situation of being neither "that poor thing" nor a burden. In those seven years she was admitted to the hospital only one time for a fractured hip.  She had no skin breakdown, limited contractures, and was treated in her own bed for pneumonia and urinary tract infections over the years.  She was provided care by loving caregivers, and she was loved by many. The staff of the two sister facilities that she called home became our extended family.

I was able to be a partner, assist in her care, be an involved mother in after school activities, help my son with his homework, and serve as room mom at his school. I was able to be present in our home as wife and mother in our family commitments.  Our one income family was able to provide for our immediate needs and to save for our son's college needs. This was not always easy, but it was our new “normal” and we did the best we could. The stress of caregiving is tremendous. It takes a village to raise our children and it takes a village to care for our vulnerable loved ones of all ages and needs in all settings. The nursing home setting had a profound impact on our family. Long-term care is the most precious, personal and spiritual time for transitions in roles and in preparation for the final transition to Glory.

I would like to take a moment to share with you a glimpse of what our lives could have been without our Medicaid partner.  In 2007 the potential of living 6 months could have been a reality.  We would have had two options if we had to leave the assisted living without Medicaid. One would have been to care for Mother in our home, a home with a then 13 year old still needing to be driven to school and activities, increased homework, wife to prepare meals and provide 24 hour care during a time that Mother was still walking and wandering. The focus was caring for Mother and family.  When Mother was in our home, she found it to be stressful living with us before she chose to move to the assisted living. She wanted to be with friends her own age in her own "home".  In our home, she had the constant reminder of her losses and her dependence on us.  We required sitters in my absence along with medical equipment.  If we continued to care for Mother in our home, she may not have received the highest quality of care that she deserved and she may never have achieved a high quality of life.

Our second option without Medicaid would have been to pay privately for the nursing care that she needed 24 hours a day.  As an estimate in 2007, the private rate for the nursing home was $5,000 per month or $60,000 a year. Over a period of seven years the total would have been a minimum of $420,000. Our family would have required loans to meet those needs.  We were and still are a one income family.  We would have done everything needed to care for Mother.  However, as parents to our only child, we also had to anticipate his college needs. This would have been an overwhelming situation and limited at best.

These are two very different options both affecting our family and most importantly the quality of care and the quality of life that Mother would have experienced. There would have been no peace of mind for any of us with either of these two options.

In closing I would like to express my thanks to you and to ask for your continued support of Medicaid as an essential way to meet our medical needs and financial support not only for our loved ones, but for families as well.  As the generation before us, we have contributed to our Social Security and have anticipated having Medicare and Medicaid in place as our needs arise.  It has been a privilege and an honor to walk with Mother as her partner on this journey.  Mother's last transition occurred on September 1, 2014 when she was called home to Glory. As my husband and I walked with Mother out the front door in the early hours we left with no regrets. It was well with my soul.  I hope that our experience with Medicaid can relay the profound impact that the decisions made with a vote can have on the lives of those you serve. The photo of my hand with Mother's reflects my commitment of love and care and her fragile dependence and trust. With our Medicaid partner, Mother was afforded quality of care and quality of life while I was afforded the peace of mind to continue to serve in my proudest role, Daughter.

 

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In September 2016, Consumer Voice partnered with StoryCorps to interview four nursing home residents from different backgrounds and beliefs to record, preserve, and share their life story. The recordings were presented at the Consumer Voice conference in November 2016. For more information on StoryCorps, click here.

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