When Caregiving Becomes Everything: How One Family Copes With the Long-Term Care of a Mother with Alzheimer's

Thursday, July 25, 2013

Bernice, Mary and Brenda Osborne (Elizabeth Ross/WGBH)

Throughout the week, we're talking with caregivers—people who give much of their time and energy to caring for children, parents and other loved ones who need regular and ongoing assistance. In some cases, this caregiving can last weeks or months. In others, it can last well-over a decade.

Such has been the experience of Bernice Osborne-Pollard, long-term caregiver to her mother Mary who suffers from Alzheimer's disease. Bernice shares her story of love, caring, frustration, and overwhelming sacrifice.

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Guests:

Bernice Osborne - Pollard

Produced by:

Megan Quellhorst

Editors:

T.J. Raphael

Comments [19]

Peter Turck from Philadephia

I was so captivated by Bernice Osborne-Pollard's strength, resolve and love....what an inspiration...how does she do it?

I do not want to violate your privacy policy but I just wanted to send Bernice a note of support as well as a comment about how she changed how I look at difficult challenges.

Thanks to you John for your support of Bernice, especially the difficult question that she tried to answer about her Mom's being "there"...that's where I lost it..in the car having my lunch (which is where I usually listen to your show).

Keep it up John...

Best Regards

Peter

Jul. 30 2013 04:23 PM
Bryan Bergstrom from Mendota Heights, MN

I just discovered the Takeaway program and had specific interest in Care Givers and what they go through. I am so moved by everyone’s stories, in spite of everything, everyone seems so proud - they should be.

I don't want this to sound like a commercial, because it is not. I have just started working for a company, their products and services have been developed to help those who either need direct support or for those, who need a break from providing that support. I am so happy to be part of an industry that can help to bring happiness to others. I putting this information out here, so others know there are other options out there; that can help both care givers and those receiving care.

Jul. 29 2013 04:43 PM
Gordon Magill from Austin, Texas

I have lost several close friends to early-onset Alzheimer's, and known others so afflicted. I want to congratulate WNYC, PRI, and "The TakeAway" on a truly socially invaluable service provided by the series on Caregiving in America. And to John Hockenberry for his very compassionate, empathic interview in the last broadcast on Alzheimer's caregiving. Well done!

Jul. 26 2013 03:56 PM
Juanita from Southern Oregon

My husband was diagnosed with Alzheimer's Disease four years ago. We were dealing with this together until about (4) months ago when he started into a steady cognitive decline. I've given up my nursing career to take care of him full time as I could not bear the thought of someone else doing for him, what we had vowed to do for each other when we were married 30 years ago today. The experience of watching my husband slowly being claimed by AD, is heartbreaking, devastating, and exhausting...

Jul. 26 2013 01:49 PM
Max Wallack

It is important for children to understand Alzheimer's disease so they can still interact lovingly with family members who have this disease. I am a 17 year old college junior, Alzheimer's researcher, and Alzheimer's advocate.I grew up as a caregiver to my great grandmother who had Alzheimer's disease. After her death, I founded a nonprofit organization that had distributed over 23,000 puzzles to Alzheimer's facilities. Recently, the book I coauthored explaining Alzheimer's disease to children became available on Amazon.My hope was to provide some helpful coping mechanisms to the many children dealing with Alzheimer's disease among their family members. 50 percent of the profits from this book will go to Alzheimer's causes. I think this book could help a lot of children and families. "Why Did Grandma Put Her Underwear in Refrigerator? A Book Explaining Alzheimer's Disease to Children." http://amzn.to/13FYYxh

Jul. 26 2013 10:25 AM
Cheryl Curtin from Clover, SC

I am my disabled brother's caregiver and guardian, and I find few who are caring for a sibling, although I know they are out there. He is 51, a year older than me, has schizophrenia among other things, and lives in an assisted living near me. I was so moved by the story this morning of Soldier Barnes and his mom. In many ways traumatic brain injury is like dealing with the mentally ill, which is incredibly challenging. We are the last of our family and have moved 1000 miles away from TX now, so I'm it, there's no one else to help, though my husband and child are very supportive, God bless them. He has many physical problems now, including COPD, and a cluster of other mental issues. Needless to say, it's lonely and difficult, and the support group I found was overwhelmingly for parents focused on children, which is so wonderful that they have it, but very different issues. I wish I could find more help, and help others in my situation. Thanks so much.

Jul. 26 2013 10:11 AM
Lynne

My dad had lung cancer and passed away in 2009. He was so fiercely independent that I only truly became his caregiver when he got to the point where he needed round-the-clock care. That only lasted for a matter of days. I wish he had let me do more for him sooner.

Jul. 26 2013 09:54 AM
Sheila Michaels from St. Louis

From 1986-1992 I was the caregiver for my Mother, who had strokes every few weeks. From 1988 through 1993 I had my best friend, who had AIDS on my living room couch. (It was always a "temporary" arrangement & every day he discussed his plans for suicide.) There we so many days I feared I wouldn't survive the two people I loved best. And occasionally one of my brothers kidnapped my mother & tried to get her to give him Power of Attorney.
So many of my mother's friends felt that I could be a better caregiver & they had so many suggestions. As if any of their children would ever have done the like.
I am very grateful that I was able to hire caregivers, I am so grateful that I survived those years & the harrowing aftermath. And I am so happy to hear this series.

Jul. 26 2013 01:24 AM
Jean Anne Cipolla from Rye Brook, New York

Your stories this week have been beautiful, touching and loving and I truly appreciate them, as I have been a caregiver for my parents for the past 5 years. My dad is going on 90 with multiple chronic conditions and my mom is 82 and has what would be characterized as mild/moderate Alzheimer's. I also teach Patient Advocacy part-time so I can stay at home and be with my parents. You give up a lot but you get so much in return. Bernice, Mary and Brenda's story today struck close to home and I would just like to add that, financially, it's not only the career that you are giving up in choosing to work part-time or not working at all - it's the added loss of no contributions to Social Security or to your 401K that, compounded over time, cost us hundreds of thousands of dollars of retirement income in addition to career advancement. But these are our parents, siblings, spouses, children, friends, and lovers and there are very few ways to handle caregiving without bankrupting families. Get all the support you need. Thankfully I have a wonderful brother and cousins and family and friends. And thanks for all these stories. Sharing is important.

Jul. 25 2013 08:09 PM
Ann Dinapoli from San Francisco, CA

I'm caring for both my parents, my Dad is 90 and terminally ill, my Mom in her late 80's battles debilitating depression. I can relate to the relief felt when my Dad is in the hospital for a crisis mentioned in your interview. The guilt I feel for those that feelings of relief is terrible. I am determined that my parents are treated with respect, protected form the cons and fraudsters that are constantly trying to snare them, cooked for, dressed, bathed, helped with transportation, house keeping, and general mobility. And they both are having to watch their pensions and saving constantly dwindle in unexpected ways due to the economy and the shenanigans of the nations financial institutions. These two individuals did everything right, yet now at the end of their lives are under constant threat of looming instability. And how am I rewarded for my efforts? I cannot take full time paid employment, so I have used up what little savings I had just to pay my bills. I have no retirement. I have no health insurance. I have no time for deep friendships or committed relationships. I am falling behind on my student loans, which I took out in order to get retraining for a work world that I am locked out of because I can only work part time and value my family more than my employer's demands in jobs that don't pay enough to live.
I honor and love my parents. I know that all too soon they will be gone from my life. I am grateful for all they did for me. I am proud of what I do for them, but I wish there was more support and acknowledgement in our nation for those of us who care for those in need of care, be it the elderly, the injured, the sick, the disabled, or any of the vulnerable who need more than the greater society wants to bother with because they all to busy being rugged individualists and making themselves rich or powerful. That is until they grow older or otherwise challenged but the unexpected reality of being mortal.
Well, that's my rant, thank you for your program. It is so nice to not feel so isolated and forgotten.

Jul. 25 2013 04:32 PM
Jennifer V Jones

What a beautiful way to recognize caregivers. I hope that I could be or someone could be to me the angel that Bernice Osborne-Pollard is to her mother.

Jul. 25 2013 04:29 PM
Robert Kutchera from Fort Lauderdale

Re: audio message left Thursday 3:30p.m.
Forgot to mention I was calling from Ft. Lauderdale, Fl.

Jul. 25 2013 03:32 PM
Elissa Lewin from Wyncote, PA

In 2000, my 90 year old father-in-law could no longer live independently. He had Parkinson's disease, diabetes, congestive heart failure, had survived several cancers, and had just enough dementia to make life interesting. He moved in with me, my husband, and our two young children. After living with us almost 5 years, he died at home. The following day I woke up and realized I had just had my first solid night's sleep in 5 years. That experience led me to research what happens to caregivers physically and emotionally and to create Nancy's House, a comprehensive respite program for caregivers which provides support and teaches self-care

Jul. 25 2013 03:01 PM
Rosa Washington from Florida Keys

Your story brought tears to my eyes as I remembered taking care of my Dad from 2002 to Labor Day 2011. Before coming to live with me he was a very active (church, gardening)widower, but dementia began to set in and his driving privileges were taken away from him. My husband, my son and I took care of him, and at times the roller coaster of emotions was almost unbearable but he was the only Dad that I would ever have and he had always been there for me. Why didn't I put him in a home? I did not put him in a home because it would had made my emotional state even worse. I do have to thank the folks at VNA Hospice of the Florida Keys, they were very compassionate and helpful the last six months of my Dad's life. Not only were they there for him but also for our family. Thank you for spotlighting the unsung caregivers that are doing it for love.

Jul. 25 2013 02:41 PM
S. Miksa from Texas

From 2006 to 2008 my mother and I took care of my grandmother. My mother had move to Texas to live with me because I wanted her to rest and not have to work as a nurse anymore. Just a few months later certain events happened that resulted in her mother, who was around 95, coming to live with us. She was high maintenance and it fell mostly to my mother, 70 at the time, to take care of her on a daily basis while I worked. I helped, but I never felt like I helped enough. By 2008 we were both burned out--to the point that I actually asked my grandmother to please let herself go, to please die. My mother was having nightmares of having a box chained around her head. In July 2008 I made the decision that grandma needed to go to a nursing home. We just couldn't do it any more. In September grandma passed at the age of 97. My mother had visited her everyday at the home, still taking care of her. They had a complicated relationship. We started to get our lives back. My mother was relaxed, happy, doing her own thing. In July 2009 she had a stroke which left her brain dead. There were no signs of trouble--she was great the night before and then completely incapacitated the following morning. My siblings and I made the decision to let her go and after 5 days she passed. I believe that despite her having gotten her life back after caring for her mother that the stress of it all got her in the end. I felt it was my duty to take care of both my mother and grandmother but the price was very high---the stress, frustration, anger, hurtful words, physical and mental exhaustion, day in and day out, were too much for my mother and I. Being a caregiver means giving everything to that person..to the point of insanity. But, we have to remember that those we are serving are human beings and we have to treat them the way we would want to be treated should the time come.

Jul. 25 2013 01:22 PM
Karen Bernstein from Austin, TX

I'm an avid listener to The Takeaway with John Hockenberry but never so attentive as today. My brother and I are dealing with our mother's slow decline with Alzheimer's. Most every conversation with her is like watching a helium balloon slowly float away both for its beauty against a wide open sky and for the realization that she'll never return. Thank you, Bernice and family, for the courage to share your sense of hope and the deep grief in each day.

Jul. 25 2013 01:20 PM
Kevin Skinner from Delaware

What a touching story and what wonderful daughters Mrs Osborne has. My thoughts and prayers are with the Osborne family

Jul. 25 2013 01:06 PM
James Ahlquist from California

In 1998 my mother had a mild stroke and I became her family caregiver until her death 14 years later. She had heart disease and vascular dementia. In October 2006 I quit my $87,000 application programmer job at a bank to provide my full attention to her living at home again.

As the dementia progressed she stopped walking and needed to be spoon feed. Eventually she stopped talking but it was a happy day when she spoke a few words. For her last 18 months her eyes were closed most of the time yet she was content. She was disconnected but in her way connected to life.

When I told someone I just met that I cared for my mother with dementia the cliche question asked was, "Does she know you?". My reply was, "Don't know, don't care".

Congress should assign one Sunday on the calendar to honor America's Caregivers.

Jul. 25 2013 11:55 AM
Peggy Correa from Fair Haven, New Jersey

My husband developed early onset dementia in 1998 when he was 51 years old. My daughter was 11 years old and my son was 14. He died 7 years after his diagnosis. Your broadcast on Caregiving is a remarkable gift to those who are presently caregivers and those who have been. When I would try to describe the myriad of emotions during those years, I often felt it is best left to the poets as I could not fully and accurately express my constant churning of feelings, low and high. So, now I have heard the poets. Reflecting back on caring for my husband, Drew, so many of my lovelier moments came from stranger's kind words and moments of grace that were unpredictable. Your participants are now part of that experience for me.

Jul. 25 2013 10:23 AM

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