If you’re are not being personally impacted by this disease, a natural reaction is to turn a deaf ear and ignore the whole issue.  Don’t!  The statistics are too compelling.  An estimated 10 million Baby Boomers (one out of every eight) will develop Alzheimer’s.  Most of America’s Baby Boomers will spend their retirement years either with Alzheimer’s or caring for someone who has it.

Today, I want to highlight  a new report by the Alzheimer’s Assocation, “Generation Alzheimer’s: The Defining Disease of the Baby Boomer” and also the Larry King special that will air this evening at 8am, “Unthinkable: The Alzheimer’s Epidemic.“  Both the report and the Special can do much to raise awareness, educate us and call us to action against this devastating disease.

Let’s look at the “Generation Alzheimer’s” report first.  According to the new Alzheimer’s Association report, “Generation Alzheimer’s,” it is expected that 10 million baby boomers will either die with or from Alzheimer’s, the only cause of death among the top 10 in America without a way to prevent, cure or even slow its progression. But, while Alzheimer’s kills, it does so only after taking everything away, slowly stripping an individual’s autonomy and independence. Even beyond the cruel impact Alzheimer’s has on the individuals with the disease, Generation Alzheimer’s also details the negative cascading effects the disease places on millions of caregivers. Caregivers and families go through the agony of losing a loved one twice: first to the ravaging effects of the disease and then, ultimately, to actual death.

While modern science and medicine has made great advances in research and treatment of heart disease and cancer…that is extending longevity.  Unfortunately, there is a terrible risk associated with longer life.  We now have a growing elderly population at risk for Alzheimer’s and other dementias.  Of those who reach the age of 85, nearly one in two will get Alzheimer’s.  The sad reality is that although Alzheimer’s disease is the sixth-leading cause of death in the US, there is inadequate funding for research and for that elusive cure.

One of the most stunning points of this report for me is this, “For every $100 the government spends on Alzheimer research, it spends more than $25,000 for care for people with Alzheimer’s and other dementias.”

What can you do? Reach out to your elected officials for increased funding for research to find a cure.  Remind them of how this devastating disease is affecting your loved ones. Sharing your personal story will put a human face to this terrible disease.  This country had made enormous progress in the fight against cancer, heart disease and HIV.  We can do the same with Alzheimer’s!

To get more information on Alzheimers, view this short video and hear about the Shriver Report (with new data, expert insight and personal essays.)  Click here.

To find out where your congressmen stand on health/research issues, click here.

To contact your congressmen, click here.

On to to Larry King’s Special this evening.  I hope you’ll be able to watch it live or later online.  In it, Larry will be joined by people who have been touched by Alzheimer’s disease.  Either he or a guest will undergo a brain scan to detect Alzheimers; and the Special will highlight the 3 new stages of Alzheimer’s.

In Larry’s preview interview, he shares this staggering statistic.  By the year 2050, 100 million people are projected to have Alzheimer’s.  Larry makes a simple but profound statement, Alzheimer’s is a “life of no memories.”

To see a preview of tonight’s special, hosted by Larry King, click here.

(Source:  The Alzheimer’s Association)

An elder attorney friend of mine has heightened my awareness of how important this is. He has worked with plenty of families who have completed all the right documents: the will, healthcare proxy, durable power of attorney and advance directive. Then suddenly, a stroke, dementia or some other unforeseen health crisis occurs. The advance directive can be open to interpretation by family members and even health care professionals. Families, in the throes of emotion and anticipatory grief, are pressed to make decisions, often with conflicting information about potential outcomes. Worse yet, as a friend recently shared, when she presented the hospital physician with her elderly father’s advance directive (stating that he did not want extreme measures taken), the physician treated her with disbelief and disgust.

So, how can we prepare for complicated end-of-life decision-making for our parents? This week, I visited our Area Agency on Aging, (REAL Services)  and viewed a new documentary (now available through Amazon.com), “Consider the Conversation.” The film points out that “Forty years ago, most people experienced a quick death, but today we are more likely to suffer a slow, incremental dying process.” The film allows us to face and understand this fact, and shows us ways to “have the conversation” with our loved ones.

Here’s what I learned from the film:

• The film opens with inteviews of ordinary people on the street, answering a simple question.  “How would you like your end of life to be?” Most said they would prefer to die at home, surrounded by their family.  Have you ever asked your parent that question?  I admit I have not.
• The fact is that most people die in a hospital which really necessitates a family being united and being a strong advocate for their loved one. Realize that the focus in a hospital is on curing disease.  More care does not necessarily mean better care.
• One powerful point for me – “Hospice is NOT giving up hope.” So few of us know what hospice offers and the nature of the hospice experience … until we face crisis.  I have often heard, “I wish we had not waited so long for hospice.”
• Experts in the film advise that we need to normalize death.   Death is a part of life, so families need to talk about it.  There need to be intimate discussions and sharing of values, preferences and choices.  Questions such as: “What does it mean to live well?”, “How can I care for you well at this point in your life?”
• There is a very interesting segment, titled “100 things.”  The viewer is asked, if you had to give up the 100 most important things to you, one by one, at what point would life no longer have any quality for you? Think about thinks like vision, hearing, mobility, eating, and so forth.

I found the film thought-provoking.  By the end of the film, I realized that having end-of-life conversations not only allows us to honor our aging parents, but also to feel at peace and intimately connected with our parents at this important time in their life.

“Consider the Conversation examines multiple perspectives on end-of-life care and includes information and experiences gathered from interviews with patients, family members, doctors, nurses, clergy, social workers, and national experts on death and dying.”

I highly recommend it for families and organizations who want to promote education and advocacy in their communities.  An hour viewing, followed by 30 minutes of discussion, would help families learn how to broach this difficult subject, and slowly, we could begin to change our cultural norms around the subject of death.

For more information about the film, and to purchase it:  Consider the Conversation website

If you are in the following areas and have an aging parent, I invite you to attend!  I’ll be highlighting key parts of my book, “Transitioning Your Aging Parent: A 5 Step Guide Through Crisis & Change.”

Learn how to:

• Make the right decision in time of crisis
• Balance the needs of your parent and yourself
• Build your support network

You’ll walk away with strategies, tips and resources that are relevant to your situation and your family.

The seminars are free of charge.  However, where indicated below, reservations may be required.  To secure your reservation, contact the community of interest below.

• Friday, March 4th. 2-3 pm. Video show at the studio of Susan Baida and John Mills of eCarediary.  To view the segment (live at 2pm or later, in its archived form), click here.
• Saturday, March 5th. 3-4pm. Center for Nursing & Rehabilitation. 520 Prospect Place, Brooklyn, NY.  1st floor (Atrium)
• Sunday, March 6th, 9:30-11am.  Park Slope United Methodist Church, 410 Sixth Avenue (Corner of 6th Ave. and 8th St), Brooklyn, NY 11215
• Wednesday, March 9th. Tentative, tbd. Center for Nursing & Rehabilitation. 520 Prospect Place, Brooklyn, NY.  1st floor (Atrium)
• Wednesday, March 9th, 7pm. Morningside Retirement and Health Services (MRHS). 100 La Salle St., #MC, New York, NY.
• Thursday, March 10th, 3-4pm. Prospect Park Residence.  1 Prospect Park West • Brooklyn, NY.  To reserve, call 718-622-8400 or email kazbell@generationsms.com
• Thursday, March 10th, 6-7pm.  Prospect Park Residence.  1 Prospect Park West • Brooklyn, NY.  To reserve, call 718-622-8400 or email kazbell@generationsms.com

Hope to see you there!  Dale, Transition Aging Parents

Novel methods for more accurate diagnoses and new drugs for better treatment will play important roles in a comprehensive solution to the Alzheimer’s problem.  However, a careful look at how “awareness and education” can drive immediate progress reveals a surprisingly optimistic scenario.

It may not be obvious, but better awareness and understanding of Alzheimer’s symptoms and risks can bring tremendous short-term benefits.  Such knowledge can reduce healthcare costs, enable more timely and effective intervention, reduce incidence of dementia, and accelerate scientific progress.  This short article, “5 Reasons Why Alzheimer’s Awareness Matters”, makes a clear case for the benefits of higher awareness.

Be a part of the solution. Increase your own awareness by reading this short article and then promote the message more broadly by sharing it with your online networks.

To read the entire article, click here.

(If you’re new here, you may want to subscribe to my blog posts or request my Free E-Course. Thanks for visiting!)

I had an experience today that was a wake-up call for me!

I have helped my mother through several major and minor transitions over the past years, and I’ve researched and written quite a bit on the subject.  But, today I experienced just a glimpse into how hard these transitions must be for our aging parents.  Mine was a humbling experience!

My husband and I decided to visit a new church today.  Our current home church is such a long drive each Sunday, and we really chose that church 15 years ago to meet the needs of our then 3 teenagers.  So, my husband and I discussed options and selected a nearby church that we had attended once for a special service.

Nothing prepared me for how I felt as I walked inside that church.  It was a feeling of being lost!  And, I was not alone.  My husband was with me.   I knew no one.   We didn’t know where to sit (my husband joked we were probably in someone’s established seat).  The service format was different; much of the music was different.   I heard so many names and references to people that meant nothing to me.    I found myself looking at every detail, taking it all in with every sense.  I was trying to make sense of it all, putting it in my personal framework.  Not easy!  The pastor greeted us and commented, “it is hard changing churches.”  And, then it hit me.

How must our aging parents feel as they are going through a transition?

• when everything has changed around them
• when they must adjust to a new home, new ways of living and doing things.  (A move into a retirement community really is an adjustment to a whole new culture.)
• when we ask them to downsize and expect them to part with “things” that carry a lifetime of memories with them
• when they are moved away from everyone they know, and every place that they hold dear.  (their church, physicians, pharmacy)

Yes, transitions for your aging parents are often necessary.  But, I encourage you to approach them with extra patience, empathy and a spirit of partnership.

Next time, before you discuss a major change with your aging parents, it might be helpful to put yourself in a situation similar to mine today.  Go someplace where you know absolutely nobody and where you feel totally out of your comfort zone.

I guarantee you will be able to relate more empathetically to your parent and will respond with more compassion.

If you’re reading this blog, I know you are concerned about healthy aging and quality of life for your aging parent (and yourself!)  Please read on to see how your “one vote” can make this headline come true!

Please watch her short video, and if you support her efforts, vote for her as many times and as often as you like

(If you’re new here, you may want to subscribe to my blog posts or request my Free E-Course. Thanks for visiting!)

*****

A big part of my summer is gardening. I love all parts of it; planning, planting, the feel of the soil, the smell of the plants, tending to the plants and anticipating the fresh and plentiful produce later this summer. If your elderly parent enjoyed gardening in their younger days, consider ways to downscale or modify the work involved so they can still enjoy it.

Interesting side note: “Garden therapy” has been shown to be effective in the treatment of Alzheimers. A British study shows that it relieves anxiety in those with dementia. All the more reason!

In listening to my mother share stories about their community garden in her retirement center, I’ve come up with the following tips:  
• Consider creating a raised bed. It will reduce kneeling or bending over the garden. You just build a wood structure and fill it with soil. There are also raised bed kits.
• Consider a potted plant on your deck. Even herbs could be a good selection. The fragrant smell and getting outdoors could do so much to lift the spirits.
• Involve your parent in choosing what to plant. Even one plant may be enough. My mother’s neighbor has just one tomato plant that she lovingly cares for everyday. And, when her plant starts to yield, she proudly shares the tomatoes with all her neighbors.
• The best times of day to garden for the elderly is early morning or evening to minimize the sun, heat and humidity.
• Consider adaptive gardening tools. Think about your parent’s specific needs as you consider tools with the right grip, length, weight and durability.

The benefits are many:
• The whole cycle of planning, planting, tending, harvesting is a wonderful activity for the body, mind and soul.
• It’s a great activity to do with your aging parent. Conversations will likely lead to stories of past gardening, family times, memories.
• The fresh air and sunlight is healthy.
• Smell and touch of the soil, plants and their yield can be very healing.
• Being immersed in an activity that they can lose themselves in can help them put worries out of their mind.
• And, as my mother always says, she has to have a purpose in each day. This is one activity, all summer long, that meets her need.

I’d love to hear from others. Will your elderly parents garden this summer? Could you add to my list of tips and benefits?

The Validation technique was created by Naomi Feil 30 years ago.  It is a tested method of communication with disoriented elderly that helps reduce stress, and enhance dignity and happiness.  It’s all about accepting the feelings of another person and reaching out to them with empathy.

There is extensive training for those who wish to become certified.  But, in our seminar, we only received an overview.  I’ll share what I learned and provide a link to one of Naomi Feil’s books that family members/caregivers may find useful.

Naomi Feil says there are 4 stages in final life.  It’s important to understand what stage the person is in to know how to apply the Validation technique.

• Mal-oriented. The person is unhappily oriented to reality.
• Time confused. The person has lost cognitive capability and clock time.  He/she is still verbal.
• Repetitive motion. The person uses repetitive motion to replace lost speech.
• Vegetation. The person has retreated inward.

How does the technique work?  We were taught 3 key concepts.

• Centering exercise. Before working with a person with dementia, use this centering exercise to prepare.  Think of a color and breathe deeply.  It really helps you clear your head and be able to focus on the other person.
• Mirror the other person’s facial expression, tone of voice or beat of repetitive motion.  They showed us a video of Naomi doing this.  It’s quite powerful:  http://www.youtube.com/watch?v=CrZXz10FcVM
• Use anchored touch and music. We learned about the various touches: touch associated with mother, father, friend, partner or child.  For example, if a person with dementia keeps wanting their deceased mother, the ‘mother touch’ could be used.  We tried it.  As we used the ‘mother touch’ on another person, we looked straight into their eyes and sang “Twinkle, Twinkle Little Star”.  The touch and the music helps the person feel like they did when they were with their mother and helps them feel at peace.

Our presenters shared that when they decided to implement this program at a nursing home that had serious problems, they had to also show benefits, including cost benefits.

• In 2007, the average number of meds per patient was 18.  In 2010, the average number was down to 5.
• There was a reduced number of psychotropic meds and number of falls.
• There was a sizeable increase in staff retention and ROI.
• Census is consistently at 100% after implementing Validation.

Their mission is now “to create an environment where moments of joy, independence and wellness are the focus of each and every day.”

The biggest take-away for me was that if this technique is consistently used, no one will have to face the vegetative state.

Here is a book written by Naomi Feil, describing Validation techniques for family caregivers: Validation Techniques for Dementia Care: The Family Caregiver’s Guide to Improving Communication

Home Instead Senior Care (a provider of non-medical home care and companionship to older adults) sponsors a “Be a Santa for a Senior” program across the country.  For the 2008 national campaign, 400,000 needy seniors received gifts from 27,000 volunteers.    Since the annual program began, 930,000 gifts have been delivered to 568,055 seniors.

The needy seniors served don’t ask for much.  Common requests are socks, pajamas, hand/body lotion, blankets.  “One lady is asking for a Bible, puzzle and blanket.”

Most of us reading this post have elderly parents.  My mother often remarks that her friends tell her how fortunate she is to have two children who care about and for her.  Think of the many elderly who have no one and very little financial means.  While there are many programs to ensure children get clothing, toys and food at Christmas,  people often don’t think about the isolated and lonely seniors.

You can reach out and help those seniors through this program:

• Call your local Home Instead franchise and ask if they are sponsoring the program in your area.  http://www.homeinstead.com/findhomecare/default.aspx
• You can involve your church or civic group in the “Be a Santa” program.
• If you aren’t able to purchase gifts, you can help with gift wrapping and delivery.

Consider being a “Santa for a Senior” this year.  Help provide the human contact and social interaction that is so very much needed by these seniors.

In a small but important way, “you” can brighten the life of a senior this Christmas!

Source: http://www.montgomeryadvertiser.com/article/20091116/LIFESTYLE/911160304/Santa-program-helps-fulfill-elderly-wish-lists

University of Pittsburgh researchers have shown that at the time of transitioning our parent to a nursing home, we (as family caregivers) face the same level of anxiety and depression as when we bathed and fed our parents at home.  Think about why!  We are no longer in control, our parents are at their most vulnerable, and we have entered a “world”  we know little about nor have experience in!

Why is it that we adult children sometimes view the nursing home staff as an adversary? How can we find a way to partner with the staff?

Dr. Pillemer, a gerontologist at Cornell University, believes we have to see ourselves as allies, not adversaries, to the nursing home staff.  He says that “family members can …work with staff to solve problems.”

Here are some of his suggestions:

1. Take requests and complaints to the right level. He suggests the staff social worker as a good place to start.
2. Practice “clear and respectful communication.” Avoid blaming the other person or putting them on the defensive.  Phrase the problem in terms of why it’s important to your parent.  Once you think you’ve reached agreement on an issue, be sure to clarify the agreement verbally.
3. Keep visiting and monitoring. Dr. Pillemer says that “the amount of visiting done is directly related to the quality of care”.
4. Give positive feedback as often as possible. Hugs and friendly coaching go a long way to set a positive tone.  The article gives an example of how one nursing home still receives a fruit basket each Christmas from the family of a former (now deceased) resident.  A staff member there says, “That’s so thoughtful.  It says we made a difference in people’s lives”

The 5th way to partner comes from Dr. Eleanor Barbera (founder of  My Better Nursing Home).  She recently shared that every family (with a loved one in a nursing home) should ask to attend the “care plan meetings” for their loved one.  These meetings occur when the person is first admitted, and then at regular intervals.   You’ll come away with a fuller understanding of your parent’s overall care and also will be establishing yourself as an advocate for your parent.

So, become an ally and partner with your parent’s nursing home staff.   Do the following as often as possible.   Take every opportunity to be present, say ‘thank you’, and handle problems in a respectful, solution-oriented manner.  Be aware that  many of the staff giving hands-on care haven’t received a lot of training, work under stressful conditions and receive low pay.

As Dr. Pillemer says, “It’s an extremely challenged system”.

Source: http://newoldage.blogs.nytimes.com/2009/10/19/easing-tensions-in-the-nursing-home/