I spent half of Jaws under my seat and have not watched horror movies since. This seems like one. I can't see, my feet hurt and there is constant noise. This is just like that party last week.

The four of us from Caring Companion Home Care are starting a "virtual dementia tour" at Atria in Kennebunk,. ME.The form asks: Do you feel confused, anxious, disoriented? I don't know what is going to happen. Maybe anxious. 

We each put plastic soles with spikes face up in our shoes. Next are yellow goggles and big gloves. Lastly, ear buds playing constant noise- I keep trying to hear what the people are saying but it is a jangle of ...well, noise. Susan leads me into an apartment, promising not to leave me and asks me to do four tasks. I immediately forget number four. 

1- Find and put on the white sweater. I head for the bedroom, walking slowly and hunched over because I can't see my feet. My co-worker (at least I THINK it is Maggie) is folding clothes on the white bedspread. That wasn't on my list - or was it? The sweater is not there but here it is in the white closet. 

2- Write three sentences in a letter to your family and put it in the envelope. Is the paper in the bedroom? No. Kitchen, no. Score! Living room. I can't see if my pen is writing and jeesh, I can't feel the paper to rip off the pad. These people are mean and I now hate envelopes. 

3- Set the table for four. They didn't get me this time. Only 2 mats are out. But, dang. Paper plates. How many are here? Plates and mugs, not so bad. I can't feel the weight of the plasticware. 

I hear Maggie asking questions. "She won't answer you!" I yell. I can hardly hear myself. Can she hear me? She is counting out her tasks and says "water". That's it! My fourth thing. I feel around for the clear plastic cup. 

Yay, I win. What do I win? Awareness of fear, frustration, disorientation and wanting help, feet that still tingle and thankfulness that I do not have dementia. 

Susan gives us therapy...er...talks to us about the experience. We talk about color contrast and keeping items where they belong. It's hard for dementia patients to see white on white which is why it's a good idea to use colored plates so they can see their food. It's good to greet someone from the front, waving hello, saying their name aloud and extending your hand. I can see that these steps will help to orient someone. 

An hour later, we have put the episode behind us. Because we can. I am so glad I can. 

We sincerely appreciate our caregivers and we thank them often. The work they do, their devotion and our work have brought tenderness into my life. I often tell my coworkers that my job has changed me. I am not making that up, anticipating my next raise!

Back in the dark ages, I found socializing to be awkward, embarrassment-inducing and

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I have to confess. I am a list-maker. My excuse is that I am a visual and kinetic learner. Seeing the words in front of me and the actual movement of writing help me to remember what I have to do, or buy or who to call. 

It may not be polite to carry a list of the following communication tips, but you can review them and try a few at a time. They are even useful in everyday life, especially when meeting new people.

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25 years ago, walking to an Ocean City, NJ beach with my three-year-old daughter, I sang at each street corner. "Stop, look and listen, before you cross the street. Use your eyes, use your ears, and then you use your feet!"

Approaching a person with dementia is significantly different than greeting a friend or family member. It is important for you to know that their brain is changing. They are confused or anxious. They may not remember you, that you were coming, or why you are there. To ensure that your appearance does not startle a person with dementia or put them "on edge", try the following, which is very similar to that little song: 

Direction

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Teepa Snow is a dynamic, inspiring, insightful coach for professionals and families who support Alzheimer's patients. She will appear in Newton on Wed May 29, 2013, to give a FREE seminar, entitled Essentials for Your Journey Together. This is a rare chance to see such a gifted speaker on Alzheimer's Disease.

At Caring Companion Home Care, we use videos of some of Teepa's training when we train our own caregivers to work with Alzheimer's patients. She is funny and empathetic, and her West Virginia accent stays in Massachusetts ears long after the video ends. If Alzheimer's is an issue in your life, take the chance to see Teepa.

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By Vernon Doucette,
Boston University Photography

Concord residents had a terrific opportunity to learn from one of the nation's leading Alzheimer's researchers last night as Dr Robert Stern, co-director of the Center for the Study of Traumatic Encephalopathy at Boston University's School of Medicine, spoke at the Concord Council on Aging. Stern, an excellent speaker, filled evening with both useful information and hopeful stories. 

I knew we were in for a good evening when he started off with what most would consider a professional and political No-No: he told a joke about a man suffering from Alzheimer's Disease. And his point was well-taken: successful Alzheimer's caregivers have to have a sense of humor.

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Karen Tannenholz works in our office, and last summer she faced the kind of sudden medical emergency we help many people through. Stressed families often imagine their circumstances are unique, but Karen’s story reveals threads common among many: feelings of growing confusion, helplessness, stress, anger, and even humor are all normal. Ultimately, deeper appreciation of each other can emerge as we navigate together through some of life’s most difficult passages. To hear Karen’s story, click 'Read More' below:

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Planning elder care is fraught with emotional minefields. Perhaps nothing is harder than when dementia or Alzheimer's strike, and a loved one’s skills or judgment has degraded and family action is required. This may mean taking away car keys, insisting that a caregiver comes part of the week, or that the elder move to live in a facility.  This is always easier if you know that your parent, when entirely competent, had expressed a preference for how to handle the situation. The trouble is that we find that many families have not made such plans.

This is the first of a series of blog posts on lessons learned on navigating that difficult terrain.  In future posts, we will address how to handle situations when someone’s competence has declined due to dementia, stroke, or other factors. For today, we will assume the elder is competent to make decisions.  This leads to our first recommendation:

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Download a flyer for this web conference here

Caring Companion Home Care of Concord, MA and the nonprofit National Private Duty Association (NPDA) will host a consumer education web conference entitled Depression and Older Adults – What Every Caregiver Should Know on March 13, 2012, at 8 p.m. EST. The live and interactive program will provide advice on how family caregivers can work with professionals to identify this condition and develop an effective plan of care for a loved one with depression. Caregivers will learn how to identify key issues and problems, locate needed experts and resources, and outline a plan to provide the best care for a parent. The event is free of charge and anyone can participate.

“Unrecognized, untreated depression is widespread among elders, who may present somewhat different symptoms, and who may need different types of treatment than younger people,” said Deborah Bier, PhD, director of the Concord office of Caring Companion. Bier holds a doctorate in therapeutic counseling, and has spent more than 20 years working with people of all ages with physical, cognitive and emotional disabilities. “Effective treatment can bring about an amazing improvement in quality of life and ability to function. This webinar is the type of increased public education and awareness that’s sorely needed.”

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March 31, 2012 - Sponsored by the Metrowest Alzheimer's Partnership

Where do families turn when they realize that a parent’s memory is fading? Dealing with the emotions surrounding the onset of Alzheimer’s disease, which is the most feared illness in the U.S. after cancer, is difficult. The MetroWest Alzheimer Partnership, in collaboration with the Alzheimer’s Association, is hosting an educational program that is free and open to the public on Saturday, March 31st at Whitney Place in Natick.

Concrete help for families can be elusive as they struggle to provide daily caregiving, research local resources such as residential and day programs, and find local support networks. Especially difficult for families is when their loved one starts to exhibit some of the troubling behavior commonly associated with Alzheimer’s disease.

The event features nationally recognized Alzheimer expert, Paul Raia, Ph.D (above right).

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Note: The following was published in our monthly column "Living and Loving: Elder Care in the 21st Century" in Gate House News' Concord Journal.  We will continue this theme of dementia in this blog with periodic articles on the subject.

Deborah

The popular cultural view of Alzheimers Disease and other dementias is that they are all about pain, tragedy and heartbreak.  But this is only part of the story -- stop there, and we are robbed of real sweetness.

The wisdom that care partners (family, friends and professionals) can glean from people with memory problems can be profound. If viewed through an all-too-often missing lens, and by utilizing known best practices, time with such folks can also be enlightening, love-filled and satisfying.

Here are five life-affirming lessons I've received from “Habilitation Therapy,” the best standard of care for those with dementia, their families and professional caregivers. I believe that what helps dementia patients feel happy, calm, secure and fulfilled actually represents vital life lessons reduced to their essence, revealing wisdom of the ages. 

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Hi Deborah,
I read your article online about normal forgetfulness and wanted to ask where you would turn if you were 44 and worried about this.  I do live with quite a bit of stress (divorce, own business, a somewhat mentally abusive boyfriend, etc), and have always been a multi-tasker who doesn't like to focus on details.  Since high school, I've been awful with names and memories of long term events.

So it didn't concern me when my boyfriend became concerned I didn't remember seeing a movie (I slept through it), or that we discussed something.  We had a rocky relationship and I thought he was excusing his behavior.  Recently, though, I had an intern work 3 months for me, and when a month later I tried recalling his name, I could not for the life of me remember until I looked it up.  If you think I should worry?  I've mentioned this to my primary and they excuse it to juggling.

On the bright side, I've noticed I am able to remember more things now that I've left the boyfriend, but I want to double check... Thank you!!  -- Signed, Worried

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