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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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Water, Water, Everywhere: Preventing Dehydration

Posted on May 6th, 2015 by kim

by Kim Keller

I never fully appreciated how important drinking water was until my dad needed to be hospitalized — twice! — as a result of severe dehydration. He first complained about feeling extremely tired, and then he suddenly became completely confused, seemingly out of the blue. It scared us! Dad was so weak and disoriented that we needed to call an ambulance to get him safely to the hospital.

And as it turned out, the fuss was all about water.

It seems so simple. Water. Yet, severe dehydration is a serious health concern for aging adults. Medications can be dehydrating. The ability to signal thirst doesn’t work quite as well anymore. The ability to store fluids diminishes. Those with dementia can no longer keep track of their water intake. And, for many, the dismay of incontinence makes all fluid intake extremely undesirable.

My sister Karen and I became relentless reminders with our dad, and now with our mom, to drink more water! Talking with friends, we’ve discovered that we aren’t alone. Many of them have experience with this issue as well.

So we asked for some of their tips, and here’s what they told us:

“I am always trying to get my mom to drink more water. Part of the problem is not knowing how much she drank. I always suggest that she put water in a quart bottle and I tell her she needs 2 bottles a day. That way she always knows how much she had.”

~ Mindy, art restorer, Weston, CT

“Most older adults, I have found, if they drink water at all, handle it better in small doses — meaning a small glass, but fairly consistently throughout the day. Encourage drinking a full (small) glass when taking meds, which is usually at least twice daily. I encourage clients to drink about half the small glass before taking the meds, so they go down easier. I try to get them to also drink a full glass (even if it’s small) with every meal. Make it a routine.

“I think water can be boring and uninteresting for many older adults, so we put it “on the rocks,” or we add a splash of OJ, grapefruit juice, cranberry, etc., to mix things up. (Be sure to check if there are any issues with medication interactions here.) We’ve even added a maraschino cherry for fun.”

~ Kathy, a gerontologist and eldercare manager, Hartford, CT

“I recently bought something called a citrus zinger water bottle. It has a juicer on the bottom for lemons, limes and oranges but can also be used for fruit of all kinds. It flavors the water, which sometimes is what’s missing for people: raspberries and lime, blackberries and lemon, melon and mint, etc.”

~ Karla, Darien, CT

“What is their favorite drink? Coffee? Then put liquids in their favorite coffee cup and make sure it’s hot. Whiskey? Then pour apple juice in a favorite whiskey bottle and warm it up in the microwave. Juice? Then pour water in a red-pebbled glass so that it looks like juice. Martini? Pour water in a martini glass and add olives. When it looks like their favorite drink, they are more likely to drink it.”

~ Jolene Brackey, author of Creating Moments of Joy for the Person with Alzheimer’s or Dementia.

“In the last couple of years of my father’s life, he would get so dehydrated that he’d have these episodes. He’d lose contact with reality, start calling out, and become incoherent or delusional. It was always a big emergency, involving ambulances and rushed visits to the hospital. One time they almost had to turn a plane around on the way to Florida. We did everything we could think of to entice him to drink. There was always a water bottle, fruit juice, his favorite drinks like Cel-Ray soda (we had to get it from NYC; soda that actually tastes like celery), non-alcoholic beer or soup at hand. It seemed like we asked him to take a sip of water at the beginning of every other sentence.

“The only time he requested water was one time that he came out of a coma. He was “nothing by mouth” at the time. He asked me for water, and it was quite the moment because we had been told he was not going to wake up, that he was going to die that night. So I had to refuse him. His eyes flew open. He thought it was so funny after all the times that I had asked him to take a drink. He said, ‘WHY? WHY??’ and then asked for the nurse. When she came, he said, ‘Tell her what you just told me.’ I repeated my refusal about the water. The nurse confirmed the medical orders and then went and called his doctor at 1 a.m. to have the orders reversed. When she came back in, she asked him what he wanted. ‘I want what I can’t have,’ he said, meaning Scotch. But he finally agreed to some water.

“I tell this story because I would have to say that, while we were very committed and resourceful in taking care of my dad, I always felt embarrassed when he had these episodes, as if I hadn’t been taking good enough care of him, as if it should have been so easy to simply give him water. So that would be my first piece of advice: to hope that people won’t feel embarrassed when this happens. The other things we learned to look for was his skin tenting or his tongue being wrinkled, but we really could have used a better way to anticipate these episodes.

“It would have been better if we could have made an arrangement to bring him in for an IV drip or, better yet, to have it available at the house, rather than wait until we had to call an ambulance because, by that point, it was very difficult to move my dad around. There were many times, taking care of Dad, that I felt like simple remedies were not available to us. These things would have made our lives easier at such a difficult time, but there was no place for simple solutions in a system that had a rule and a procedure for everything.”

~Grace, photographer, Block Island, RI

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The Flu. Who Knew? A Daughter’s Journal

Posted on April 22nd, 2015 by karen

Arthur Whitman takes a sip.

by Beth Whitman

Dad got the flu this winter. Funny thing was, it didn’t look like the flu. I thought he was just more tired than usual, or that maybe he had the mid-winter blues.

What I discovered, though, is that the flu looks and acts differently in older folks than it does in the rest of us. Dad showed none of the symptoms that we normally associate with influenza, at least not until AFTER he was admitted to the hospital.

Here is what his flu looked like: For three days, I noticed Dad getting weaker and weaker. He started out just lying in bed all day. He had no interest in activity, and he didn’t seem to have much of an appetite. To get him up and moving around, which seemed like a good idea, I had to walk with him the 20 steps out to his living-room chair. He didn’t have the energy to button or even zip up his pants. I asked him if he was okay.

“Yes” was all he said, but it wasn’t convincing.

He soon became incontinent because he didn’t have the energy to get to the bathroom in time, and then not even the energy to stand up and pee in his portable urinal. He had also lost all interest in consuming fluids.

By the third evening, when it was time for him to head into his bedroom, I went over to help him stand up. He was slouched in his big stuffed chair by the window, and seemed unusually extra-tired. I asked him if he wanted to be wheeled into the bedroom. He nodded, and then coughed a little. So I brought a wheelchair over to where he was sitting, and put my arm around his back and gave him my arm to lean on, but he was just dead weight. He couldn’t stand up — even with my help.

I called my neighbor, Steve, and asked him to come over to help me transfer my father into his wheelchair. The two of us were able, with considerable difficulty, to move him into the chair.

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A Roadmap For Finding Excellent In-Home Help

Posted on April 15th, 2015 by karen

by Karen Keller Capuciati

For most of us, the prospect of hiring in-home help can be overwhelming. I remember the first time our parents needed in-home care, back in 2006. Dad was very ill and required round-the-clock assistance. We needed someone to help out at night so that Mom could get some sleep.

We had no idea where to even look for help, let alone how to find the right person. There were so many variables to resolve, like convincing Mom that she needed help in the first place, and then deciding whether to hire from a licensed agency or find an independent contractor, like a friend-of-a-friend from church, for example (referred to as “the grey market”). Most of all, we weren’t sure how to find someone our parents would feel comfortable having in their house at night, or how to make sure that person would be reputable and qualified. I remember thinking there were endless problems to overcome.

Eldercare professionals, like the ones I meet with every month, often help their clients find the best in-home-care candidates. They do some interviewing and checking of references, qualifications and backgrounds, and then provide a couple of recommendations. And after years of doing this, and observing the results in various situations, these professionals have learned what works, what doesn’t and which pitfalls to avoid.

So I asked my group to give us some tips on finding excellent in-home help. Here is some of the solid advice they offered:

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Daily Practices To Ease Everyday Stress

Posted on April 8th, 2015 by karen

by Kim Keller

Over the years I’ve collected an assortment of techniques to protect myself from the stress of everyday life. So, whenever I feel that tension building, I check to see which of my various safeguards I’ve let slip away, and I pull it back into my daily practice to refortify my defense against stress and anxiety.

All my de-stress practices fall into one of these three categories: (a) creating organization, which gives me a sense of control; (b) finding “me time,” which reminds me to take care of myself, even pamper myself a little; and (c) maintaining perspective, which helps me remember that life is bigger, crazier, more surprising and more wondrous than any or all of my problems. In fact, I read an interview not too long ago that gave me a whole new insight into handling stress.

Dr. Ellen Langer, a bestselling author and psychology professor at Harvard, was being interviewed in the Harvard Business Review. “Stress is not a function of events,” she said. “It’s a function of the view you take of events.”

In other words, events are not stressful in and of themselves. It is only the manner in which you choose to view the events that causes the stress.

“You think a particular thing is going to happen,” Dr. Langer continued, “and, when it does, you think it’s going to be awful. But prediction is an illusion. We can’t know what’s going to happen.“

Therein lies the rub. Just because we’ve imagined some event as terrible doesn’t mean it has to be. Dr. Langer’s suggestion for overcoming this negative expectation is the first of my ten techniques for washing away the worries that bedevil me.

Imagine you’ve interviewed for a great new employment opportunity. “Give yourself five reasons you won’t lose the job,” said Dr. Langer. “Then think of five reasons why, if you did lose it, it would be advantageous for you: new opportunities, more time with family, etc. So now you’ve gone from thinking something bad is going to happen to thinking even if it does, you’ll be OK.” Try to remember that stress is just the result of your perspective of events. So change your perspective. It’s that easy.

Here are my other nine techniques:

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Open Dialogue: Overcoming The Need To Control

Posted on March 25th, 2015 by karen

by Michelle Krepak

“What if she forgets to turn the iron off or wakes up confused in the night or falls? What if she drives and gets into an accident and hurts herself or someone else?”

Like many of my clients, Laura was concerned about her mother’s advancing age and declining abilities. But more to the point, Laura came in for counseling regarding her own changing role with her mother. She complained that she was becoming her mother’s mother, and it felt uncomfortable for her.

Sharon, the mother, suffers from mild dementia due to Parkinson’s disease, and her bouts of memory loss and confusion have repeatedly raised concerns for Laura that her mother may not be safe living at home alone.

But Sharon is resistant to any move. She’s a nature lover who lives in rural New York, surrounded by horse farms and beautiful landscapes. She enjoys reflecting on the daily comings and goings of the birds and the deer on her property, and, of course, all her friends live in the area.

Sharon now clings to her home even more after a six-month stay in rehab and assisted living last year, during which she was treated for hallucinations and a general state of confusion that was apparently brought on by a urinary tract infection — common with Parkinson’s disease — and mixing up her medications. According to Laura, Sharon “absolutely hated” the assisted living facility because she couldn’t enjoy the outdoors and she was “surrounded by old people.”

But regardless of her mother’s discontent, Laura felt she needed to establish some “laws” of what her mother “could and couldn’t do” before leaving the assisted-living facility. Laura told me she knew full well that her mother resented her for making these demands, but she nonetheless insisted that Sharon take a neurological exam and a driving test before moving back home.

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Transitioning To Assisted Living: A Work In Progress

Posted on March 4th, 2015 by karen

by Joan Blumenfeld, MS, LPC

My 85-year-old client, Henry, lives alone as he always has. He retired long ago from his lifetime career as a history professor. He never married, has no family presence locally and is fiercely independent.

Although his health is generally good and remarkably stable for his age, Henry shows signs of frailty. His mind is quite sharp and he is very charming, but his memory lapses are alarming. He uses a cane to help steady his walk and, although he is still driving, his vision is certainly not up to snuff. He admits to being lonely since his few friends have moved away or died.

Henry has difficulty managing money and paying bills on time. He can barely take care of his marketing, cooking, laundry and housekeeping, but sees no need for help with any of it. He often doesn’t make or keep medical appointments and frequently forgets or misplaces his medications.

Henry is the perfect candidate for assisted living!

I aroused his curiosity about such facilities by telling him stories of how well some of my other clients have fared in them. The idea of eating three well-prepared and nicely served meals a day in a hotel-like dining room was especially appealing to Henry. Having nurses on staff to respond to medical emergencies and aides to assist with personal care seemed reasonable (only if absolutely necessary, of course). And people to talk to and play bridge with actually sounded like fun.

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Non-Verbal Communication: Breaking Through The Alzheimer Silence

Posted on February 18th, 2015 by karen

Printable Communication Board

by Karen Keller Capuciati

“I want her to tell me what she’s thinking and feeling, what she dreams about that makes her yell at night.”

But for Kari, who posted this concern on the In Care of Dad Facebook page, it’s not possible for her mom to tell her. She has dementia and has lost the ability to form words. “I can’t understand Mom any more,” Kari wrote. “I haven’t been able to in over a year.”

Her mom understands what others say to her — she can answer “yes” and “no” — but Kari feels that her mother has more she wants to say and it’s breaking her heart.

So I reached out to a group of geriatric-care professionals, with whom I meet once a month, to get some suggestions for Kari. Without knowing all the specifics of Kari’s situation, the group had some creative ideas for building a meaningful connection with a loved one when verbal communication has become severely limited.

Mary Underwood, Vice President of Memory Care at Maplewood Senior Living in Fairfield County, CT, believes that all her mom may need is a genuine connection. “Trying to have someone answer questions that they are not able to can be frustrating, not only for the caregiver but also for the person with the disease,” Mary said. “It is important to provide reassurance that they are okay. It can also be helpful to acknowledge the frustration that the person is experiencing. To say, ‘I know it must be hard to not be able to get the words out’ or ‘Even though you can’t tell me what you’re feeling, I want you to know that I am here to make sure you’re okay’ are comforting statements for your loved one. Understanding and connecting with the emotion they are experiencing is often more important than the fact of what is happening.”

Kathryn Freda, a gerontologist and eldercare manager, has had positive experience with elders using art to express themselves. “If it seems like an activity that they might be willing to participate in, I would ask my loved one to draw with pastels or larger crayons, or paint with a wide brush or fingerpaints, or mold clay into shapes. Art transcends normal thought,” Kathryn explained, “and I have often seen clients convey emotion through form and color.”

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The Still Moving Story Of “Still Alice”

Posted on February 11th, 2015 by karen

by Kim Keller

I was so excited to go to the movies last Saturday to see Still Alice, the acclaimed adaptation of Lisa Genova’s wonderful debut novel of the same name from 2007, one of my all-time favorite books. And I wasn’t remotely disappointed.

Still Alice is an eye-opening and heartbreaking story about Alice Howland, movingly portrayed by Julianne Moore. Alice is a world-renowned linguistics professor, teaching at an Ivy League university and lecturing all around the world. She is in a seemingly happy marriage, with an attentive husband (played by Alec Baldwin) and three grown children. In other words, Alice is in the prime of her life, until small uncharacteristic memory lapses start to happen.

It begins with brief little moments, like forgetting what she’s about to say or overlooking an appointment. Then one day it escalates. Alice suddenly becomes disoriented while she’s jogging and can’t find her way back home. After the episode has passed, Alice realizes that she had been “lost” right smack in the center of the college campus where she has taught for years. The experience leaves her so shaken and scared that she knows she needs medical intervention. But nothing prepares her for the diagnosis she receives: early-onset Alzheimer’s disease.

I know it may seem hard to imagine loving a movie about someone who is, in effect, losing her mind. It is painful to watch Alice despair as she falls deeper into the grasp of Alzheimer’s indignities. We watch her struggle to fight off the advances of the disease, and her attempt to maintain as much of her life and identity as she possibly can. She uses her cell phone alarms to help her manage her day, and she becomes consumed with memory games. One night as Alice is cooking dinner, we watch her write three words on a little chalkboard in her kitchen. After she writes down the words, she covers them up, sets the timer for five minutes, and walks away to continue making dinner. When the timer goes off, she walks back over to the chalkboard trying to recount those three words, challenging her memory as she uncovers the board. Then she erases the words and quickly writes down three more. Back and forth, back and forth, she goes.

But even with all the heartache, Still Alice is equal parts intrigue, inspiration and fascination. I recognize that fascination might seem like an odd word to use here, but both the film and book allow the viewer and reader the unusual perspective of experiencing the disease from Alice’s point of view. Usually Alzheimer’s is described by medical professionals or by caregivers, but this is Alice’s story, and she gives us a uniquely intimate seat.

I believe the movie strikes a chord because so many people fear what every little memory lapses might mean as they age. I found myself playing the memory games right along with Alice, and I was actually relieved when I got the answers right.

Although Alice needs to relinquish her university position, she nonetheless teaches us all a few valuable lessons about life. She shows us the importance of living in the moment — even after most of her memories and her identity have slipped away, we can see the joy she feels holding her newborn grandchild.

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