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Archive for the ‘Alzheimer’s Disease’ Category

Preparing To Get Alzheimer’s

Posted on January 25th, 2016 by karen

by Kim Keller

I was watching a TED Talk by global health consultant and writer Alanna Shaikh when she suddenly announced, “I’m preparing to get Alzheimer’s disease.”

What? Why on earth would you consign yourself to such a future? And how do you possibly prepare for such a cruel disease? I was definitely taken aback but also intrigued, so I decided to keep watching to find out more.

Alanna’s belief, it seems, stems from her father’s AD diagnosis back in 2005. He had been showing signs for about five years, and now he’s deep in the embrace of the disease, needing help to do everyday simple tasks like eating and dressing. Alanna reports that her father “doesn’t really know where he is or when it is” any longer.

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Saying Goodbye: A Daughter’s Journal

Posted on November 18th, 2015 by karen

In loving memory of Marianne Whitman, we are re-running this blog written by her daughter Beth for In Care of Dad two years ago today.

by Beth Whitman

I was thinking about last Monday, when I visited Mom. It was dinner time, and I noticed that she was holding her cup of chocolate milk up to her lips, and trying to drink, but she couldn’t figure out how to tip the cup so that the milk would get to her mouth. I put my hand on hers and helped her tip the cup. She drank deeply, almost finished the whole thing in one go. I refilled the cup, and again she couldn’t figure out how to tip it toward her mouth. So I helped her again. And after a couple of times, her hand began to remember the motion and she was able to do it herself. But she put the cup down, and when she picked it up again her hand had forgotten.

The process of saying goodbye happens over and over again in little ways. But today it happened a big way. Today she died.

I did not wake up this morning expecting to have my mom die today.

I feel somehow a little guilty.

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Breaking The Alzheimer’s Code: One Hundred Hankies For Joe

Posted on November 6th, 2015 by karen

We are happy to re-post this very special blog from August of 2014.

by Karen Keller Capuciati

I’m at the Alzheimer’s Association’s Annual Education Conference, held a few months ago in Cromwell, Connecticut. Jolene Brackey, the keynote speaker, is what you might call an Alzheimer’s visionary. After graduating from Iowa State University, Jolene began working as an interior designer but soon came to realize that she was more interested working with the people at the Alzheimer’s special care unit across the street from her design firm. She enjoyed the interaction with older people and began formulating her own unique ideas for helping people with dementia live in the moment.

She walks out into the audience and chooses a gentleman entirely at random. She asks him for his wallet and keys.

As the man dutifully hands over the items, Jolene declares, “I’m just going to place them up there behind my podium for a few hours. Okay? So that you don’t lose them.”

The man seems a bit confused but willing to play along.

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Goodbye House, Goodbye Dad

Posted on September 9th, 2015 by karen

Cynthia’s dad, Norman, surrounded by his family in the family home.

by Cynthia Greb

A part of me doesn’t want to write this. I don’t want to revisit my grief. And, I also want to write this while the memories are still somewhat fresh.

Six weeks ago I temporarily moved into the room I had lived in as a teenager. It was the family home, although my family no longer lived there. The kids were all grown and my parents had both recently moved into a nursing home — my father because of the progression of Alzheimer’s disease and my mother because there was no longer money for the caregivers we’d hired to assist her.

My home was in Colorado, but I was back in Pennsylvania to spend time with both of my parents and to sell, sort through, and dispose of all the remaining family possessions so that the bank could take possession of the family home. No, it wasn’t a case of foreclosure; it was because we’d had to get a reverse mortgage to pay for my parents’ care. And with them no longer at home, the house had to go to the bank. To say it was a time of great change for the Greb family would be an understatement.

So, I walked in the front door loaded down with my luggage. And I gazed around in shock. My siblings had told me about the pipe that had burst about two weeks before. Apparently the thermostat had been set at about 50 degrees, but one particular bedroom hung over an open porch and I guess the radiator pipes couldn’t hold up to the record cold temperatures.

Large sections of hard wood floor had been pulled up. Insulation had been ripped out. Drywall had been torn down. Rusty looking stains ran down the hall walls. Wainscoting had been removed. One closet had been completely ruined. Furniture and other items had been moved from the damaged areas and stuffed into adjacent rooms. There was a layer of dust everywhere from the work my brother and the clean-up crew had begun. Several fans were going and the living room still smelled of mold and mildew. It was a large house and it looked like a good third of it had been ruined. And the rest of it was looking none too good either.

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Facility Living: Empowering Ideas For Better Care

Posted on August 20th, 2015 by karen

by Karen Keller Capuciati

“Feeling of defeat: When you realize the place where you have moved your loved one gives less than desirable care and there is no place better to go to. I had to accept that this was as good as it gets.”

This comment was written by Martha in a recent post to In Care of Dad. She had done her due diligence, checking all the memory-care facilities in a 50-mile radius surrounding her home, eventually locating the very best place for her father. But she is frustrated because the care her father is receiving doesn’t match up with her expectations for the facility.

Martha explained that all the personalized care details that she communicated at intake — her father’s food likes and dislikes, his special skin care needs, etc. — are not being communicated to the folks who are caring for him. Furthermore, the activities provided by the facility are not engaging.

So Martha’s question is, what can be done?

I asked some professionals in the field of geriatric care for ways to help a person in Martha’s situation. Here are some of their suggestions:

Joan Blumenfeld, a geriatric care manager:
I’d like to have some help with this myself. Even “good” places often fall short of our expectations and their promises. Sometimes our expectations do not jibe with reality and that’s frustrating. So we have to make some adjustments to our expectations.

Consider the following:

Pick your battles and set priorities. Not everything is worth a confrontation.
If there is an issue of health or safety, speak to nursing or administration, not to the aides. Facilities are hierarchical. Power to fix, change or adjust comes from the top.
Visit regularly and randomly, so you can see what is really going on.
If you can afford it, a part-time private duty aide might be of service, though it may create conflict between staff and the private aide.

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Humming and Singing: A Daughter’s Journal

Posted on July 29th, 2015 by karen

by Beth Whitman

Throughout my life, routine daily activities have been accompanied by the music of my mother’s singing and humming. Sometimes her humming was under her breath and sometimes she would be singing a song in her clear and beautiful soprano voice. There are many songs I know simply because Mom has sung them throughout my life.

Du Du Liecht Mir Mir Hertzen
Du, du Liecht Mir Mit Zin.
Du, do mein mir
Da daa, d da da, d daa.

I don’t think Mom ever sang the end of that song. It always devolved into da, da, da.

Some of the songs I know because Mom introduced them to us in other ways. The Swingle Singers was a group that Mom was crazy about when we were growing up. She had a number of their albums and often played them, but her favorite song of theirs was “Bach’s Prelude Chorale.” When she was particularly happy, she would often hum the Prelude Chorale.

do DOO . . . doobie doobie doobie doobie doobie doo,
Doobie doobie doobie doobie doobie do DOO.

And then there were the old standards from the Gilbert and Sullivan musicals from the days when Mom was in the orchestra pit. She played the viola, and wherever we lived, Mom was a member of the local orchestra or played in string quartets with other musicians she met through the orchestra. I used to spend hours after school in the empty auditoriums listening to the cast rehearse.

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“Deathiversaries” And Post-Death Birthdays

Posted on July 16th, 2015 by karen

Cynthia’s dad in 2010.

We are pleased to share this blog with you. It first appeared on Cynthia’s WordPress site in April 2015.

by Cynthia Greb

What do you call a birthday when that person is no longer on this earth? I guess it’s still the anniversary of his birth, although we are no longer counting the years he has lived.

Dad’s birthday is April 30th. I wrote the first draft of this piece back in February on the first anniversary of his death. But then I set it aside to read it and revise it later. And “later” turned into another month. And now I’m dusting it off one more time.

It’s not easy to remember death.

There are so many wonderful, wonderful things to remember about Dad: his teasing and horsing around; his affection for his wife, kids, and especially his grandchildren; all his years of hard work supporting his family and never complaining; his love of naps; the way he always had time for his family; his dedication to the churches he attended and served; all the little vacations we took together; his love of food; his gregarious personality; his gratitude; his love of nature. I could go on and on. But sadly, I seem to be stuck in an endless review of his last few months.

If he had started to drastically decline and then simply continued that decline, I think I could have accepted that. After all, death comes to each one of us, and after several years suffering the indignities of Alzheimer’s, I’m sure, at some level, he was more than ready to let go of this life. As a matter of fact, for several months, while he was still living in his home, he would repeatedly tell us, “I’m ready to go home. Please take me home. Please take me home.”

We had thought he was confused and couldn’t remember that this was his own home. We tried in vain to convince him that this was the home he’d built with his own two hands when the rancher had become too small for his burgeoning family. We pointed to all the pictures of the family on the mantle. We said, “See? There we all are! This is your home.” But it made no difference. He was caught in a sad loop, not realizing he was in his own home.

At least that’s what we thought at the time.

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Five Simple Strategies For Living With Dementia

Posted on June 10th, 2015 by karen

by Kim Keller

Sometimes it’s the simplest action that has the biggest impact. That’s why I love these five “good ideas” to help anyone who’s caring for a loved one with dementia. Take a look.

The Magic of Music — Music, as we’ve come to learn, has a powerful and transformative effect on those with dementia. Check out the movie trailer from this must-see documentary, Alive Inside, and you’ll see what I mean. It’s relatively easy for you to try out — just put together a playlist of your loved one’s favorite music and load the songs onto an iPod shuffle (or any other device with simple controls). To get the biggest benefit, the music should be listened to with earplugs or a headset, in order to minimize potential distractions and allow your loved one to be totally engaged by the music. By the way, Alive Inside is now available for purchase on DVD or iTunes.
Create a Routine — Have a routine for daily activities like eating, exercising, bathing, sleeping. The discipline of a routine tends to provide calm and focus, and no energy is wasted on superfluous decision-making.
Calling Cards — One of our contributors, Colleen Lanier, gave us this great suggestion: create calling cards for your loved one. Handing a stranger a card that alerts him or her to your loved one’s impairment can discreetly reduce the potential for awkward and/or misunderstood moments.
Sundowning Strategies — “Sundowning” is a psychological syndrome that entails increased confusion and restlessness among patients with some form of dementia, particularly Alzheimer’s. The term itself refers to the most common timing of the confusion. Finding simple activities, whether it’s helping with household chores or playing a board game, can help to ease problematic behavior. Dr. Paul Raia, a regular contributor to In Care of Dad, provides some important insight into sundowning here.
Safe Return — The Alzheimer’s Association has collaborated with MedicAlert to create a nationwide emergency response program called “MedicAlert® + Alzheimer’s Association Safe Return®” which provides a bracelet or pendant for your loved one to wear at all times. The jewelry is inscribed with the words “memory impaired” and an emergency hotline number that operates 24/7, as well as any critical medical information. So if a loved one goes missing, you can call the emergency number and immediately set in motion a search by law enforcement and personnel from the local Alzheimer’s Association. The emergency hotline operators also have full access to all pertinent medical information. The registration is simple and can be done online. The cost, as of this writing, is $55 for the first year, with a $35 renewal fee each year thereafter, plus a $7 shipping fee for the bracelet or pendant. Another consideration is “Comfort Zone,” a GPS tracking service linked to your family’s home computer that monitors your loved one’s whereabouts at all times. The information can also be delivered through text messages. This service is $42.99 per month, with a $45 activation fee. This monthly plan also comes with the MedicAlert + Alzheimer’s Association Safe Return package mentioned above. There may be an additional fee for shipping and handling of the jewelry. Here’s more information from the Alzheimer’s Association.

Kim Keller is the Co-Founder of In Care of Dad. She lives and works in New York City.

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Game Change

Posted on May 20th, 2015 by kim

by Kim Keller

Mary Clare and Marti remember how much their mom Alice loved to play games. Card games, board games, games of strategy, games of luck, Alice was always an eager participant.

The two daughters remember their mom playing bridge for years and years. Indeed, Alice was a member of two different bridge clubs, one with her friends and another with the ladies from her church, and each group would meet one night a month in each others’ homes, pair off into partners and then bid, pass, double and redouble.

Alice enjoyed playing bridge so much that it must have been terribly painful for her to realize she could no longer manage the tricky game. Alice, you see, had Alzheimer’s disease. She was 82 years old when she was diagnosed. Naturally, and yet horribly, as Alice’s disease progressed, it took away pieces of her life, bit by bit, and left her with just a shred of her former cognitive abilities.

Back when it was still in the early stages, Mary Clare and Marti asked their mom why she had stopped playing bridge, and Alice explained that the game now frustrated her. Her partners, she fretted, were seriously disadvantaged by teaming up with her because she was having trouble remembering what cards had been played.

If you can conceive how hard it is for a 40-year-old athlete to hang up his spikes, try to imagine how it feels for an 80-year-old to play her last hand of bridge.

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To Drive Or Not To Drive: Help Is Available

Posted on May 14th, 2015 by karen

by Kim Keller

In most of America, people are still very much reliant on automobiles to get around. Not so much in urban areas, where public transportation is highly developed, but everywhere else, driving is pretty much a cultural requirement. So, one of the hardest adjustments my mom has had to make is not being able to drive, even temporarily. She’s had some health challenges during the last few years that have impacted her ability to drive safely, so my sister Karen and I had to find alternate transportation and a pathway for Mom to return to driving her own car.

Here’s what we did:

After she had a stroke in 2009, there was a period when Mom’s cognitive ability was a bit shaky. She had trouble reading some street signs, and her decision-making capacity was not yet ready for the split-second requirements of Florida traffic. Her doctors told us it was a temporary situation, and Mom was certainly eager to get back behind the wheel, but Karen and I were concerned that it was too soon. So, after speaking with one of Mom’s doctors, we contacted a nearby rehabilitation center that had a program for evaluating the readiness of drivers who have incurred a physical and/or mental impairment as a result of injury, illness or normal aging.

A specialized Occupational Therapist conducted the testing. The therapist evaluated Mom’s ability to drive by testing her vision, her physical capabilities and her overall capacity to make quick judgment calls. The sensory testing was followed by an actual driving assessment.

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