Specialized Information for:

Long-Term Care ConsumersFamily MembersAdvocates

Consumer Stories

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.

Back to Top


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.

 

Hide text

 

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.

 

Hide text

Back to Top


 

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.

Listen to Ronald Blochar's Story

Listen to Sally Richardson's Story

Listen to Lois Rice's Story

Listen to Willa's Story