Mar 082013

heart_headI recently attended a salon event hosted by The Judy Fund, an Alzheimer’s Association donor sponsored effort created by Marshall Gelfand and his family now lead by daughter Elizabeth Gelfand-Stearns who lost both her grandmother and her mother, Judy (the fund’s namesake), to Alzheimer’s disease.  Elizabeth’s heartfelt passion is finding a cure for the disease that took her loved ones. To date, the family has raised almost $5 million to fund research and advocacy efforts for the Alzheimer’s Association in support of the more than 5 million Americans who have Alzheimer’s as well as the 15 million family members nationwide who are caring for them.

 What made this evening special were the headliners:  two rock stars in their respective medical specialties, Dr. Jill Kalman, a noted cardiologist at Mount Sinai Medical Center in New York, and Dr. Maria Carrillo, vice president of medical and scientific relations for the Alzheimer’s Association. Together, they addressed the twin terrors many women in the audience are concerned about:  heart disease and Alzheimer’s disease.

 The American Heart Association has done a superb job raising public awareness that heart disease is the No. 1 killer for women (and for men).  Although one in three women still die from heart disease, education about prevention is on the rise.

 As the red dress-clad Dr. Kalman told the audience, “The brain gives the heart its sight and the heart gives the brain its vision.”  Insightful words as the message for the evening was a dialogue about how Alzheimer’s advocates can take heart and follow the blueprint that heart disease (which has now evolved to heart health) has provided on how to combat an epidemic.

Dr. Carrillo was riveting as she outlined recent research being done, particularly in the area of familial Alzheimer’s disease also known as autosomal dominant Alzheimer’s disease (ADAD).  A comprehensive study is being conducted in families who carry a gene for Alzheimer’s, which, if inherited, guarantees they get the disease at a young age—30s, 40s or early 50s.  ADAD is very rare and the families who are affected by this type of Alzheimer’s usually are aware of the gene in their families.

 I was astounded to learn that ADAD family members who do develop Alzheimer’s disease do so at the exact same age their parent developed the disease.  If a parent was diagnosed at age 42, then a child who carries the gene also develops Alzheimer’s at age 42.  Dr Carrillo also discussed recent updates in the early diagnosis of sporadic Alzheimer’s disease, the most typical form of Alzheimer’s affecting more than 5 million Americans. This set off a skyrocket of hands in the audience and much discussion around whether families want to know and should know (if a test ever becomes widely available) how to predict your future Alzheimer’s diagnosis years ahead of your first warning signs.  Both doctors agreed – it is better to be informed than to be living in denial or ignorance.

While much debate always follows any exciting news, the results of this study are still years away.

Where does that leave us today? According to the docs, what we do know is that healthier lifestyle behaviors (exercise, nutrition, good sleep), knowledge of our family health histories, and reduction of stress in our lives will improve both heart health and brain health.

We can make lifestyle choices that keep both the heart and the brain healthy.  For instance, we know that a higher BMI (body mass index) and higher cholesterol (particularly the bad LDL kind) is certainly a risk factor for heart disease and may be a risk factor for Alzheimer’s disease.  We also know inflammation is bad – it is connected to the brain abnormality typical of Alzheimer’s patients and it is a common problem for victims of stroke and heart attack.  This is why it is so important for family caregivers to pay attention to both the heart and the head.

Often caregivers neglect themselves. Studies show caregivers are twice as likely as the general population to develop chronic illness – heart disease, diabetes, asthma and other health problems – because of prolonged stress.  Both doctors agreed family caregivers typically become more ill or even die before the demise of their loved one for whom they are caring.  Becoming a caregiver should be added to the list of risks for heart disease and a whole host of other health ailments.

As a caregiver, you use your heart to provide compassionate comfort and support to a loved one.  Now use your head – if you become ill or too exhausted to continue to care, what will become of your loved one and of you?  Avoid what I call the Caregiver Achilles heel – the inability to ask for help and accept the help offered.  Try creating an online volunteer help community such as the Alzheimer’s Association Care Team Calendar where friends and family can give you a break with the kids, help with your mom, or perform every day chores such as making a meal or raking the leaves when you are too overwhelmed to manage it all.

 Judy Gelfand was a Juilliard-trained pianist diagnosed with Alzheimer’s at age 62.  Her family cared for her for almost 10 years before she lost her battle with the disease.  And although she is gone, her legacy lives on in her family’s efforts to find the clues on how to stop Alzheimer’s in its tracks.  It is her daughter, Elizabeth, who created an evening to show how much our hearts and brains are connected in this fight.

The message is simple: Find the balance between caring for your loved one and caring for yourself.  Your heart and your head will love you for it.

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About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is author of A Cast of Caregivers, a book about celebrities who have been caregivers.

  14 Responses to “Caregiving Conversation Between Your Heart and Your Head”

  1. Caregiving is taking a terrible toll on me. Unfortunately I have no family to help me and my mother's friends are in a different part of the state since I moved her here. I have my mom in a facility, but just staying on top of that and feeling I am all my mom has, well I'm pretty exhausted all the time. And I work full time in a memory care facility myself. I go from work to mom and rarely have a break. I wish I had family here to step in on occasion!

    • I can related to you Patty. I too, am a caregiver for my mother who has moved down here with my husband and I 1200 miles away for her family and friends. My mother has moderate dementia. She has finally settled in after an adjustment of 4-5 months. I am exhausted at times being her full time caregiver so she goes to an adult day care center 4x/wk and they keeps her focused on other things to do. She loves to do puzzles so that keeps her busy at home. My siblings can't come down because of the cost and I won't hand out her money to pay for their airfare. We need a break at times and so wish my siblings live closer but there was no other alternative besides a facility and I did not want that. I am glad to do this job and will be so happy she could live with us. I pray to God everyday to give me strength. You are doing a good job also Patty, so do it for her.

  2. I lost my father yesterday to Alzheimer's Disease. I lost my mother to Alzheimer's Disease on May 18, 2011. My husband and I hired help for the daytime hours so that we could work. We both teach in a public school. We were the caregivers at night until a year ago when my dad fell and broke his hip. He was in a nursing home until about a month ago, when he was moved to a Hospice Unit. While I am thankful that I had the opportunity to care for them, the stress of caring for them affected every aspect of my husband's and my life. After 12 years as being primary caregivers, we are not sure of what we do now. Thank you for your incredible work and for this article.

    • God Bless you!!! May you find peace with knowing he is in good arms and with his wife again. Remember the good memories you had with the both of them.

  3. As a primary care giver for my wife Rose, I was unable to get any assistance from our Medicare Advantage insurer, United Healthcare. They had their own agent endeavor to secure home health care services which was covered for 35 hours a week by our plan. She gave up trying and told me to use a non affiliated supplier. I am an 81 year old mail with medical problems of my own which I neglected while caring for my wife. I found it necessary to engage Interim Healthcare who cared for Rose until she entered a nursing home in Nov, 2012. I submitted their bills to United Healthcare and they refused payment. The total for 2012 was $21,269.50. A testament to an insurance company who claims to give a damn about primary caregivers.

  4. I retired and am caring for my 84 year old mother. She was used to being a very independent lady and refuses to let go of that independence. She is in no condition to maintain that independence. 4 years ago my brother retired to take care of her and had a heart attack and died 5 months later. Sometimes I can understand why he had it. My mom can be very mean and ugly. Sometimes I feel I can't handle it anymore and I tell myself, "It's not about me". I love my mother very much, but I'm not made of steel. Anyway, I pray for all the caregivers out there. God bless us.

    • Dear Laura, I understand your frustration. I had a hard childhood with my mother and father. We did not get along well because she was so critical of me. I never felt that she loved me! Now, I need to help care for her, and I try so hard to be a loving daughter. Sometimes I think she is going to see through my facade. But her anger is temporary, because she forgets quickly! So there are blessings to dementia! I still work full time, and when I'm not here, my son lives with us too, and he helps out. We are trying our best, and that's all we can do! Hang in there, and don't forget to have a life of your own, too. Even if it means just taking a brisk walk for a half hour every day. Finding time for yourself is the hardest! Loving thoughts. Patty

  5. I am the sole family caregiver for my Mom. i moved across the country to take care of both my parents and my father died, leaving me with my Mom. My siblings have no interest, no desire and make no attempts to help in any meaningful way — including periodic phone calls to see how i am, how Mom is. I am at my wits end. I am my Mom's only voice and advocate yet i need to get back to my life after living in a place where I know no one — it's been five years here, and I long to move back to my home…preferable with Mom. My sibling (who controls my Mom's money in her Trust) is a big roadblock to moving. I hate feeling like a victims….yet don;t know who to trust or turn to. I'm lost with her…trying ti hang on and barely able to do so. Help.

  6. I'm caring for both parents …my mom had a stroke last year that left her paralyzed and my dad has dementia. My dad doesn't want anyone to care for him but me and its taking a toll on me. I'm 47 and have no life of my own because I care for them both. I have a sister here but when she gets home breakfast lunch and dinner its cook and over with. I have a older sister and younger sister which live in another state but they careless. It's really hard for me because I have no me time. When I leave the house 98 percent of the time my dad is in tow…there is really no help and its stressful. I left home because I was treated like a child and I come back home to feeling the same way. Crazy!

  7. AI am a 58 year old caregiver taking care of my mom who is 83 with Alzheimer's and has been living with me for 5 years. I work full time and my mother is part of a wonderful program that provides daycare, respite and a sitter. However I am still overwhelmed and my health is deteriorating. I get so tired of people telling me God will bless me for taking such good care of my mom. The government should provide more assistance for caregivers. I know eventually I will have to consider nursing homes but have had horrible experiences when my mom stayed in these facilities during respite. Alzheimer's patients cannot tell you how they are being treated and I couldn't rest peacefully knowing my mom is in unfamiliar surroundings.

  8. Yes we understand being a Carer is stressful but I find the self care so difficult.
    . I understand that I need to care for myself but never find the time

  9. Thanks for making this information available! I appreciate it. Just to know I am not alone in the frustration! My mom is nicer, happier in general, but she is also angry, and defensive! Ouch! I am trying my best! i am in that sandwich generation; son still living at home, and caring for my mom. Wish you all the best!

  10. WEDNESDAY, April 3 (HealthDay News) — The cost of caring for Americans with Alzheimer’s and other forms of dementia may now be as high as $215 billion a year — more than the cost of caring for heart disease or cancer, a new study finds.

  11. I am a caregiver for my mother, and this article was very insightful! Thank you for the information.

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