Loved Ones with Dementia: How to Connect

Today's blog is a family affair - the post was written by Ellen Woodward Potts and the photo is of her husband, Dr. Daniel Potts, and his father, Lester Potts. Dr. Potts, a neurologist, has been inspired by his father’s journey through Alzheimer’s disease. Ellen's family members have also struggled with dementia and she writes a blog that honors and supports caregivers. Here's what Ellen has to say:

'As dementia progresses, it becomes more and more difficult to connect with our loved ones. I often get questions about this from caregivers, friends and family alike. This inability to connect causes family and friends to visit less frequently, leaving the person with dementia and the caregiver socially isolated at a time when they need the most support.

How can you connect with a person with dementia? Often, the creative arts are the key. Don’t stop reading! You don’t have to be an artist, musician or have any type talent at all to employ these techniques! They’re very simple and easy to use.

Music: People with dementia usually remember things from the distant past, so choose your songs accordingly. What were her favorite songs from her youth? What music did the person listen to in her late teens and early twenties? If you don’t know, google “top forty songs” and put in the year when the person would have been 18 or 20 years old. You will get a list of what was popular at the time. Play and sing along with these songs, and you may be amazed at what happens. If nothing happens, keep trying! Sometimes, this process takes time.

Additionally, if the person is religious or was in her childhood, try singing and playing the religious songs of her youth. At a point when my father-in-law with Alzheimer’s disease had not spoken in several months and was in an in-patient hospice unit, we began singing familiar hymns. Amazingly, he could sing along! This is a relatively common experience. This excellent video with Validation Therapy pioneer Naomi Feil is an example of this. Music can help bridge the communication gap with people in any stage of dementia.

Art: Lester Potts, a rural Alabama saw miller, was the quintessential child of the Great Depression. He was all about work. He would have considered painting pictures a waste of his time. As Alzheimer’s disease stole more and more of his cognitive ability, he began attending a dementia daycare center where a retired artist volunteered his time. The results were astounding. At a point when he could no longer hammer a nail or change a light bulb, he became a watercolor artist, although he had never painted before. Even in late stage Alzheimer’s disease when he had lost the ability to speak, he could paint visual images of his childhood. Art offered him a method of communication when his verbal abilities had failed.

To do this at home with your own loved one, start with some very simple artist’s supplies, not children’s crayons and coloring books. You can buy the “Paint by Number” kits or just let the person paint whatever he wants. Inexpensive canvases and either watercolors or acrylics are best. There are often starter artist's kits available that are perfect for this.

Dance: I heard a story recently about a woman who had been a ballet dancer in her youth, but had dementia from strokes in her later years. She lived in a facility and used to twirl down the halls. Most of us danced in our youth, either at school dances or as part of a hobby. If your loved one is still able to walk, play music from his heyday and dance! If he is not able to walk, the “dancing” does not have to involve his legs. Let him move his arms to the music or take his hands in yours and pretend to dance.

Bibliotherapy: This is a fancy word for an easy concept — reading familiar things. Think of the poetry or the stories the person may have memorized or read in her youth. If she was religious, think about favorite or familiar scriptures. Make certain to read from the version of literature or scripture your loved one would have read in her youth, not a more modern version.

Expressive arts therapies like these have been clinically proven to improve mood and behavior apart from medication, and have no known negative side effects. Even in the mainstream medical community, the value of these therapies is being touted. The upcoming medical textbook, Geriatric Neurology, to be published later this year by Prentice Hall has an entire chapter on the benefits of expressive arts therapies. More importantly, the expressive arts offer caregivers, family and friends alike the ability to connect with people who often are considered to be beyond our ability to reach them.

Remember, the goal is not the quality of the product or the performance, but connecting with your loved one in ways that are not possible otherwise. If you are diligent in using these techniques, amazing things can happen.'

Learn more about the wonderful work Ellen and Daniel are doing. Their foundation, Cognitive Dynamics, is dedicated to improving the lives of dementia patients through education, the creative arts and championing human dignity.

Caregiving for Your Aging Parents

We want to welcome Barbara Friesner, founder of AgeWiseLiving and author of The Ultimate Caregiver’s Success Guide, to our Virtual Book Tour today. And readers, you're about to receive a lot of valuable information about caring for your aging parents. So let's get started:

Nourishing Relationships: Why did you write The Ultimate Caregiver’s Success Guide?

Barbara Friesner: Caregivers can learn all they want about what to do to resolve their eldercare issues – and there's plenty of stuff out there to read. (In fact, if you Google ‘eldercare’ over 4 million entries come up). But if you aren't shown exactly how to do it, you’re no better off. Plus, it made me really sad to see people struggle the way most eldercare providers do. That’s when I decided it was time to put my 25 years of caregiving and 10 years of Generational Coaching on paper.

N R: Your book comes with 11 CDs. Why is that?

B F: I wanted The Ultimate Caregiver’s Success Guide to be as easy to use as possible. But there was so much other information that’s vital to a caregiver’s success. So I created 6 CDs on topics, such as who your aging loved one is generationally, what they’re going through emotionally, 19 caregiver pitfalls and how to avoid them, etc; a CD of all the forms and worksheets in The Ultimate Caregiver’s Success Guide; a CD of my rolodex of outside resources; and 3 CD’s featuring the latest experts’ advice from an Elder Law Attorney; a Personal Financial Planner; and a Family Relationship Expert. Armed with all this information, a caregiver can confidently resolve all their eldercare issues.

N R: You mention 19 pitfalls. What are some of the common ones caregivers fall into?

B F: The first – and probably most important – is not understanding and respecting the generational and emotional differences between us Baby Boomers and our parents. The fact is that generational attitudes and emotional perspectives matter . . . a lot. But too often family members think that because we come from the same family we think the same way. That’s just not true! Our parent’s generation is very different from ours and understanding and respecting how they view the world and feel about it emotionally is critical to your success.

Sometimes what our parents say or do is illogical from our point of view but usually that’s because of their generational perspective. As a result, the way they see and feel about the world is very different from their Baby Boomer children, so it’s very important to understand and respect where they’re coming from both generationally and emotionally.

Another pitfall – and my biggest pet peeve – is thinking in terms of “parenting the parent”. If one person is the parent, by definition, the other is the child. The problem with that is that it’s then very easy to start treating and/or talking to your aging loved ones as if they are children – which they will quite rightfully resent. No one likes being condescended to . . . the “verbal pat on the head”. Unless they have dementia, the best you can do is work with them. Therefore, rather than approaching a conversation with your aging loved one as “parenting the parent”, approach it as a collaboration. And the key to a successful collaboration with your aging loved one is to create and maintain an “adult/adult” relationship.

Another biggie is thinking you can make anyone want to change. Bottom line . . . you can’t. You can’t with your kids, you can’t with your spouse – and with them you have more leverage! So if you try to make your aging loved one do something, it’s not surprising you won’t be successful. The fact is, what you think someone should do doesn’t matter. The only thing that matters is that the person making the change wants to make the change. So what do you do? You ask questions – the kind of questions that will help them discover their reason for doing something. The reason may not be your reason or it may be one you never thought of but if their reason works for them and the issue is resolved, then who cares?? (By the way – the same concept works on your kids and your spouse!)

There are 19 pitfalls that come with The Ultimate Caregiver’s Success System but these are major ones.

N R: Your company, AgeWiseLiving has been around for 10 years so what took you so long to write the book?

B F: Every person’s situation is unique to them so for a long time (ok . . . a very long time) I didn’t see how I could write something that would apply to everyone. But over time, I realized that, while each family is unique, the framework for resolving the issues is the same.

For example: Many people make a long list of their goals or have just one . . . such as to move their loved one into an assisted living community or nursing home. (I mean – after all . . . that’s where they’re going to end up eventually, right? I’ve actually had clients who have said that! And then they wonder why their loved one has stopped speaking to them! Hello!)

But, I say that’s not goal. It may be the “end up” solution but it’s not the goal. In my opinion there are 3 goals – and 3 goals only . . .
Goal #1 – that your loved one is safe
Goal #2 – that your loved one is as healthy as possible
Goal #3 – that your loved one is happy

If you focus on these three, the rest of the decisions will be a lot easier to make because then your determining questions are: Will this make him/her safe? Will this help maintain or improve his/her health? Will this make him/her happy? When you keep these three goals in mind, everything else that follows will be a lot easier.

N R: When dealing with parents, sibling relationships can be very difficult. Any suggestions for how they can work together during this difficult and emotional time?

B F: Many caregivers – especially women – find themselves doing all the work themselves because they don’t realize how much work it will be until they are overwhelmed and struggling. In addition, because of family dynamics, many caregivers think that it’s easier to go it alone than get involved with all the drama of the family issues. (One of the hardest things about eldercare is that it brings up all the “mommy & daddy” stuff and it can bring out the best and the worst in people.) And on top of that . . . the caregiver ends up really resenting her sibs for not doing what she never asked them to do in the first place!!!

There is a lot of information in The Ultimate Caregiver’s Success Guide but briefly, the solution as it relates to getting your family to help is to call the family together for a care planning meeting specifically called to create a care plan for your aging loved one.

N R: What is the biggest mistake eldercare givers make?

B F: There are two actually. The first is that they don’t organize, plan, and prepare in advance. When our parents were taking care of their parents, the average length of caregiving was 3-5 years. Now the average is 15 years. (My journey with my mother was 17 years.) That’s a long time. When it was only 3-5 years, caregivers might have been able to “wing it” for a few years but you can’t wing it for 15-20 years and stay sane!!! The point is . . . . you can’t always predict your eldercare issues – but you can prepare for them.

The second big mistake is not taking care of themselves. All eldercare givers seem to have one trait in common – that they take care of everyone else – especially their aging loved one – before they take care of themselves. But the reality is – if you don’t take care of yourself you’ll be no good to anyone else. And no, It’s not selfish or self serving to take care of yourself. It’s simply a matter of – if you want to help others – you have to help yourself first.

N R: Some of our readers may not have heard of a Generational Coach. Could you explain a little about Generational Coaching?

B F: As a Generational Coach I work with families who are struggling to help their aging loved ones resolve critical elder care issues. Not only do I help the families figure out what to do, I also help the family communicate effectively with their aging loved one so their aging loved one will actually do what’s in their best interest. In other words, I help families resolve their eldercare issues by choice, not crisis.

I work with the family members – never the senior – and all the work I do is by phone so I work with families all over the world. And, since sibling issues can be a big challenge for many families, I also help siblings work successfully together.

N R: How did you become a Generational Coach?

B F: I became a Generational Coach as a result of more than 25 years of personal experience. I was the care manager for many years for my grandmother and for the past 17 years for my mother who by the time she died recently, had severe advanced dementia.

Helping my grandmother was relatively easy because we were really close. With my mother, on the other hand, it wasn’t so easy because frankly, she and I weren’t all that close. But after my father died, my mother needed help and even though I have 2 other sisters, my mother would only let me help her – which I was happy to do.

Initially I took over her finances which was relatively easy because she wanted my help. Later though, when I had to take away the car and move her into an assisted living community it was extremely difficult and contentious. I realized that finding the answers and getting someone else to do what needs to be done were 2 very different things! I knew I had to figure out some way to talk with her so she would willingly do what was in her best interest – a way other than trial & error!!!

So I did a lot of research, talked with hundreds of seniors and their families, and professionals with senior clients – and created a system that helps the generations successfully help each other WITHOUT the time, money, and stress of trial and error – which ultimately became The Ultimate Caregiver’s Success System.

Thanks, Barbara, for your thoughtful and helpful answers to some difficult questions. You can learn more about Barbara and her work by clicking on the title of this post - it'll take you to her website, AgeWiseLiving.com.

Readers, now is your chance to find your voice. Click on "Comments" just below and to the right of this post. Share your concerns and ask Barbara your questions. Follow the prompts – you can sign on as anonymous and click send – it's as easy as that! And log on again tomorrow for our wrap-up. We'll be posting your comments, questions and Barbara's answers.

Caring for Your Aging Parents

Anytime tomorrow, Thursday, September 17th, please join us here for a Virtual Book Tour with Barbara E. Friesner, founder of AgeWiseLiving™. Barbara, a Generational Coach, is an expert on issues affecting the elderly and their families. You'll find Barbara answering questions about her book, The Ultimate Caregiver’s Success Guide.



Her resource for eldercare providers is filled with over 200 pages of step-by-step solutions to your pressing questions. For more than 25 years, Barbara has been a care manager, first for her grandmother and then 17 years for her mother, who had severe dementia. She learned first-hand how emotional and overwhelming eldercare can be. As a result, Friesner started AgeWiseLiving™ and provides one-on-one Generational Coaching to help family members resolve their eldercare issues by choice, not crisis.

Get a headstart by going to HerMentorCenter.com and read some of our article on aging parents. Clicking on the title of this post will land you on an article about The Tarnished Golden Years.

We are delighted that Barbara will be visiting our blog and invite you to drop by. Read the interview, then click on "Comments" at the end of the post. Follow the prompts that come up, you can even sign in as 'Anonymous.' Share your own experience with other readers or ask Barbara a questions and learn from the wisdom of her answers.

Here are the tips we promised this week to help you care for yourself as well as your aging parents when their golden years are tarnished. You can use these suggestions to reduce your Sandwiched Generation stress during the holidays and long after:

Give up your ideas of perfection and be realistic about the path ahead. You will not have the benefit you had imagined of involved, wise, old parents in your life. Acknowledge that the dementia will steadily increase and your parents will become less and less responsive to you. Be respectful of your parents' dignity even as you transfer control over their circumstances from them to you.

Evaluate your options as you keep an open mind. There is not one correct solution for everyone in your situation. It is helpful to hear from others what they have learned but you are still the only one walking in your shoes.

Look for resources in the community to help you. Recognize that you can't, nor do you have to, do everything yourself. Contact local gerontologists, talk with hospital social workers, meet with health care aides, visit nursing homes, join a caregiver support group.

Be honest with your siblings about their responsibilities. Even if you've been in conflict when them in the past, resolve to have an on-going dialogue now and be firm about finding a way to share the care-giving duties.

Take care of yourself to decrease the burnout that is common. A good support system gives you the opportunity to express your emotions and receive comfort. Set aside time for rest and relaxation, difficult as that may be to arrange. A sense of humor will get you through some tough times, as you laugh through your tears.

Look at how your past relationship with your parent has affected your present way of life. This is especially important if your parent was abusive when you were growing up. Decide to let go of the tendency to define your behavior today as a response to the memories you hold of your childhood. Make up your mind to make changes in your behavior that benefit you now.

Grow up. As you take on the complex chores of caregiver, you are the one ultimately making decisions about your own life as well as that of your parents. Both Wendy and Jon Savage matured as they reconnected with each other and their father, making dramatic changes in their lives after his death. They were able to trust themselves and take chances to achieve what they wanted, both professionally and personally.

Just as in the aptly named children's game, tug-of-war, you in the Sandwich Generation may feel like you are in a battle zone - pulled simultaneously from both sides and stretched to the limit in the middle. It is a struggle to sense the breaking point, which must be done to protect yourself for the long haul. It's not easy to put limits on the connection with your aging parents, but you need to place that relationship in the context of the rest of your life. Trust yourself as you design a plan that works for all of the family, yourself included.

At this time of year, the holidays with their comforting repeated rituals can be bittersweet when our loved ones are not with us to share them. It is even more poignant when aging parents are there physically but not mentally. They may not remember the joy of holidays spent together in the past nor recognize the new members who have joined the family circle. As a Sandwiched Boomer, you may be facing these kinds of holiday celebrations with apprehension.


No doubt, your parents had looked forward their sixties, seventies and eighties as golden years, with the chance to enjoy the fruits of their labors. But what happens when those days become tarnished gold? What if nothing you or your parents do can restore the shine you all were expecting? This is what faces Sandwiched Boomers each year when their parents are diagnosed with Alzheimer's, senile dementia or stroke.


Today, dementia of some kind has affected 14% of Americans over the age of 71 and the incidence is rising. Caring for these seniors generally falls to their Baby Boomer children; studies indicate that one in four families now take care of an elderly parent. Often the caretakers are women. According to a recent AARP study, 8.7 million American women aged 45 and older are caring for both aging parents and growing children. How they, and their brothers in some cases, cope with these demands is of increasing concern.

Now even Hollywood has begun to look at the dilemmas faced by Sandwiched Boomers. With the Academy Awards season right around the corner, the buzz is out about "The Savages," a film looking at Sandwich Generation reactions to an estranged, aging father. Laura Linney and Philip Seymour Hoffman play siblings, Wendy and Jon Savage, who can be described as Open Face Sandwiches – suddenly thrust into caring for their abusive father while they deal with on-going crises in their personal and work lives. How they respond, and what they learn about themselves in the process, mirrors the situation for many Baby Boomers.


If, like the Savages, you are propelled into caring for a difficult parent, undoubtedly you will sacrifice many things – time, sleep, emotional stability, money, energy, days at work, dreams of your own. Because of these extreme pressures, family caretakers report having some kind of chronic condition at more than twice the rate of non-caregivers and research suggests that this additional stress can shorten lifespan by up to 10 years.


So what can you do? Stay tuned in for seven tips to reduce your stress and help you get through the holiday season when your parents golden years are tarnished.