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Podcasts and Essays

Fran and Joe's Story

Fran Princehouse was diagnosed with Alzheimer's disease. Joe Princehouse, Fran's spouse, shares his experience about downsizing and living as Care Partners before and during COVID.

  • This is an essay by Joe, a member of the Memory and Alzheimer's Treatment Center Patient and Family Advisory Council (MATC PFAC).

    Note: All views expressed are opinions of the author of this essay.

    There is magic in movement. Much is said about the value of exercise, walks, nature, serenity, socializing, lower stress, trust, relationships, less clutter and more. Environment is also critical for this to happen.

    Many years ago Mild Cognitive Impairment changed life forever for my wife Fran and I. We didn't really know what that meant until 2015 when Dr. Paul Rosenberg really lowered the boom with the dementia diagnosis. We loved our mountain home. But we were in the wrong place. We are willing share our adventure/misadventures in hopes that they may spark a useful thought as you travel your own journeys and help others on theirs.

    Our environment was no longer good for us. We moved and lost over 2000 sq. ft. of living area.

    Right sizing was a tearful, heartrending experience. Friends jumped in with untold hours of heavy labor. There was a major battle convincing the mortgage company that the property was not abandoned.

    We moved 6 weeks after locating an apartment. It took 3 more months to clear out 55 years of accumulated stuff and prepare to show the home.

    Three days after listing, the house sold. 30 days later the deal closed. It was a traumatic 6-month period and one of the most rewarding in our lives.

    Moving before clearing out the house provided a clean, orderly refuge furnished with familiar possessions while our old world collapsed. Things moved back and forth as we changed our minds.

    The 10-mile move left our normal contacts, relationships, shopping patterns and mountain views intact. We were now living on level ground with easy freeway access and lower utility bills but without shoveling, raking, trash, lawn care maintenance and homeowner stress.

    The senior living apartment in a very small town ushered in an additional set of friends in our general age group. With 43 apartments on 4 floors, it is easy to get acquainted. The many activities are all self-organized. It is easy to promote things we find interesting and participate or not without pressure with many available options.

    The serene 100+ beautifully landscaped acres provide easy walking, communing with nature along with solitude when desired in a secure setting. Concerts, cultural events, entertainment and religious services are held in the Basilica on site. A University located 2 miles away provides cultural, entertainment, exercise, sporting, and educational opportunities. The local library and senior center are across the street. Groceries and restaurants are within a mile. DC and Baltimore are each an hour away.

    The 750 sq. ft. apartment has many windows that reach to the top of the 13' ceilings which let in a lot of natural light with views of the mountains beyond the lovely grounds. There is limited space to put things which reduces time spent looking for stuff. Narrow rooms keep walls and furniture within easy reach for support during stumbles and dizzy spells. Clutter is dramatically reduced but we still have a long way to go. Distractions are much less and we spend more time concentrating on each other.

    We were 75 years old before we had an empty nest and now we are playing house again at age 80. This is the environment we need at this stage of our journey.

    As you work to establish your own environment, we wish you well!

  • This is an essay by Joe, a member of the Memory and Alzheimer's Treatment Center Patient and Family Advisory Council (MATC PFAC).

    Note: All views expressed are opinions of the author of this essay.

    It is natural for people to be care partners. VIRUS gives a new view. The occupants of our 43-unit senior living apartment village each have their own challenges. Myself included: my challenges involve getting out by myself occasionally, keeping appointments when my wife, Fran, cannot safely go along, getting her enough exercise (I can no longer walk fast enough), and letting her spend time socially with others while Daybreak Adult Day Services is closed.

    Every week, people from a loosely organized group of villagers spend several hours with Fran. They are friends that Fran knows. They safely talk, laugh, walk around the lovely grounds, have lunch in the gazebo, and whatever else suits their fancy. I do other things during this time.

    This core group of about a half dozen, helping each other and others, expands by a dozen and a half or more as needed. Sometimes a person is a Carer and sometimes a Caree . Active involvement by over half of our population is wonderful.

    For over 5 years they have been providing transportation, grocery shopping, activities, prescription pickup, companionship, ordering stuff, and doing whatever else is needed. Just since the VIRUS started, they have helped people with hip replacements, broken bones, twisted bowels, dental surgery, eye surgery, cancer, strokes, hernia operations, COPD, severe arthritis, loneliness, depression, loss of a spouse, cardiac catheterizations, heart valve replacement, and a kidney transplant, among other things.

    The village is an example of a self-directed, minimal structure, care partnership. It is based on the care partner concept of using what you have, doing what you can, when you can.

    Fran and I are Care Partners (capital C), defined as “an agreement between the person with a chronic condition and their loved ones to be partners in care as best they can. To help each other while they can as well as they can. This is discussed as part of their life and commitment to each other. Starting when all parties are capable, active participants in each other’s care.” Ideally this behavior starts before clinical signs appear and the transition to caregiving occurs. This is not for everyone. It has worked for us.

    The Care Partner concept has many labels and forms: Family, Extended Family, Partners, Friends, Community, Dedication, Commitment, Marriage Vows, Love. Partners may be pairs or a group.

    All Care Partnerships rest on the bedrock of focusing on what you can control, which is mainly your own behavior.

    We do better when, as much as we can, we help ourselves, help others, and help others help us.

    The VIRUS brings home the value of helping yourself and those near and/or dear to you using what you have whether that’s time or car or talent or ... We each belong to many different villages, each interlocking to form society.

    People do also need to institute some more formal structures to help with some things, mainly protective issues. When the structures don’t provide what we need, we can work together to fix them.

    People show up for each other. Join in.

  • This is an essay by Joe, a member of the Memory and Alzheimer's Treatment Center Patient and Family Advisory Council (MATC PFAC).

    Note: All views expressed are opinions of the author of this essay.

    Holiday shoppers crowded Walmart as Fran and I had lunch at Subway. We had come from church with its warm, inviting atmosphere, good friends and good cheer. We had our shopping list.

    Our neighbor had left a message the day before asking that we pick up two items for them when it was convenient. She called later to ask if we got the message. She wanted four sticks of essential brand margarine (not a spread) from Jubilee Market. A carton of 18 large white eggs was wanted, not a 12 pack & a 6 pack, but an 18-egg carton.

    I finished my lunch before Fran. She was busy talking to people in nearby booths and wishing passing children a Merry Christmas. My new Oxygen tank was running low faster than expected. I excused myself to get the spare tank. Fran was still chatting happily upon my return. Excited people were so loud we could barely hear each other. I had to leave to get the shopping done. Fran would not come with me.

    I hustled down a couple of aisles in the store. The cell phone rang. “Did you do the shopping yet?” No, would Walmart do? I was not in good shape. COPD treatment and Prednisone were taking a toll on me, including weakness, sleep deprivation, blurred vision, fatigue, joint pain, indecisiveness and shortened attention span.

    Back at Subway, Fran simply waved –twice –when I tried to get her to leave. She was into the spirit of the season. I went back to shopping. The phone rang. “Did you remember about the margarine and egg carton size?”
    Yeah, yeah, yeah.

    Back at Subway, Fran was gone. I spotted her coming in from outside, then she disappeared.

    After I got into a checkout line, I spotted her next to a guy in an elf costume who was singing Christmas Carols to little kids. Fran was having a fine time. Later in the car, she asked “Are you angry with me?” “Of course not,” I replied. She said, “I’m glad I'm not the reason you are upset.”

    Back home, the dog had to use the grass. Fran held the eggs as I fumbled around with the apartment security system while holding the groceries and the dog’s leash. Inside the building, a happy crowd chatted excitedly in the hall. Balancing the egg carton on one hand, Fran joined them. Eggs went down. Dog went down the hall.
    Upstairs in our apartment, my mood was not good.

    Fran looked at me and said, “I just want you to know that I’m really sorry you dropped the eggs.”

    Happy Ending: Egg count-- 4 lost, 14 just cracked, and the cookies were great! Fran had a wonderful time, her dementia at bay for another day.

    Who dropped the eggs? I did!

 

Helen's Story

Helen Hovdesven's husband Arne was diagnosed with Alzheimer's disease a number of years ago. Before he passed away in the Spring of 2009, Helen generously shared her story in an audio slide show and a series of podcasts. She currently serves as co-chair of the Patient and Family Advisory Council of the Johns Hopkins Memory and Alzheimer's Treatment Center. 

  • Long journey begun. Helen shares the beginning of "accepting and learning the path."
    Listen and view the slide show (10 min)
  • Early decisions. Helen describes symptoms her husband had and decisions they made.
    Listen (10 min) 
  • Psychological support. Helen talks about receiving psychological support for both her and her husband.
    Listen (10 min)
  • Coming to terms. Helen deals with her husband's inability to communicate clearly.
    Listen (9 min)
  • Focus on caregivers. Helen talks about the multiple roles caregivers fill.
    Listen (10 min)
  • NEW! Brain donation and autopsy. Helen returns to talk about her experience of participating in brain donation and the brain autopsy that provided a definitive diagnosis of her husband’s Alzheimer’s disease that helped the family with information and closure.
    Listen (6 min)

Podcasts with Experts

Memory Loss: What's Normal, What's Not
Dr Constantine Lyketsos provides background information on how the brain changes over a person's lifetime and how to distinguish between normal aging and dementia. For example, forgetting where you put your keys versus forgetting what the keys are for. Dementia involves loss of cognitive functioning (memory, abstract thinking, language, attention, decision-making) that affects daily functioning. He walks through the neuropsychological assessments for diagnosis of Alzheimer's Disease.

 

Assessing the probability of dementia and potential causes
Dr Paul Rosenberg underscores the importance of getting assessed at the first signs of memory loss. He walks through the assessment process involving tests and comprehensive patient history with the patient and family member or caregiver.

 

Why it’s important to have a diagnosis
 "I find making the diagnosis is more reassuring than not because first of all, they can give it a name and second of all, once it has a name, they can learn something about it. And they can put what I call some limits on their anxiety," says Dr Paul Rosenberg. The patient and family can make plans and start treatments. 

 

Major types of medications used in Alzheimer’s
Dr Paul Rosenberg explains two major types of medications for Alzheimer's disease - cholinesterase inhibitors and memantine - and how they are used as the disease progresses. As the disease progresses, depression and psychosis may also develop and medications are effective; Dr Rosenberg outlines what changes to look for and when to consult with a provider.

 

Tests for predicting Alzheimer’s disease
Similar to research efforts that led to finding risk factors for heart disease and in turn preventing heart disease, Dr Paul Rosenberg explains areas of research that could identify biomarkers for Alzheimer's disease. A combination of clinical events, such as getting depression in old age, and biologic tests may serve as non-invasive predictive tests to asses risk for Alzheimer's disease. Research continues on: brain imaging, cerebrospinal fluid, blood tests, and brain inflammation.
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