Senior Pets for Senior People

Montrose Press [January 13, 2019]  Kathryn R. Burke

graphic, Bryce Chismire

I am a senior and I have a senior cat. She is my roomie, my dinner companion, my BFF. She’s waiting at the window when I drive up to the house and is my enthusiastic ‘greeter’ when I walk in the door. And, she watches, with slumped shoulders and sad eyes, when I leave. She lies on my lap, purring, as we sit by the fire on a cold night or lounge on the couch watching movies. She sleeps next to me and keeps me company in my office. We play ‘hide and seek’ (albeit more slowly now, since we both have arthritis). She graces my FB and Instagram pages, and everybody who knows me, knows her, and always asks, “How is KitKat doing?”

Like for many of my senior friends, having a furry friend provides wonderful companionship. Yet, some who long for a pet may be afraid to get one lest they outlive it. That’s where fostering or adopting offers a perfect solution. You can age together. Senior canines and cats share calm camaraderie with us—a blessed gift as we age. They offer unconditional love and alleviate loneliness. Seniors become increasingly isolated from family, busy with their own lives, and friends, suffering from loss of mobility and slowly dying off. Adoptable senior pets have often lost family, too, and are lonely and need love just as much as we do.

Why pair a senior human with a senior pet? One main reason is energy levels. We’re not as zippy as we once were, and they aren’t either. Puppies and kittens are so cuddly and fun—and so busy! All that non-stop, wiggly energy. Trying to keep up with it is exhausting. And often destructive if you don’t.

Older pets have outgrown the need to chew up your underwear, pee on the bedspread, climb the curtains, or poop in the middle of the kitchen floor. They are already trained. They can still learn new tricks and routines, but with a greater attention span than a rambunctious puppy or kitten.

Senior pets are less likely to get underfoot, cause falls, or tear tender skin, a curse of the elderly. They tend to be mellow. Accustomed to being around people, they are less likely to hide or run off, and (usually) come when called. Their personalities are already established, so you know if you’re a match before you adopt one.

Spending time with your pet helps improve mental and physical health. Benefits include lower stress levels and blood pressure, reduced depression, and improved exercise—for you both. Pets open opportunities for interacting with others—take the dog for a neighborhood walk, and many people will stop to ask you about it. Post pictures on your FB page, like I do, and start conversations with other pet owners and make new friends.

For seniors not living at home, many residence facilities encourage pet ownership. Nursing homes allow pet visits. Facilities often have their own resident cat or dog companions. Some, including the hospital, host service animal visitations.

If you want to become a senior pet companion, where do you start? Senior Pets for Senior People FB page is dedicated to matching people who want to adopt or foster a senior pet. They also help to match shelters with rescue organizations. Many rescues have medical funding and just need a safe haven for these pets to live out their lives with love and compassion. Check in with Petfinder.com and search (by zipcode) for pets near you available for adoption.

Second Chance Animal Shelter in Ridgway has a robust re-homing program for lost or abandoned pets. Like Montrose Animal Shelter and Waggin’ Tails Delta Humane Society, they have fee-based adoption programs that include spaying and neutering. Local vets know of pets needing to be re-homed and can help match pet to person, finding ‘forever homes’ that suit both.

Senior pets for senior people—compassionate companionship that benefits both.

Kathryn R. Burke is an author and publisher. Visit her here https://kathrynrburke.com/
Kate also writes and speaks on caregiving. More here, http://caregiver-journey.com/

Senior pet resources, SW Colorado
https://www.facebook.com/SeniorPetsForSeniorPeople/
https://www.petfinder.com
https://www.facebook.com/Montrose-Animal-Shelter-254061984637107/
https://adoptmountainpets.org/
• http://www.deltacountyhumanesociety.org/
http://www.surfacecreekshelter.org/

There comes a time

Montrose Daily Press [October 21, 2018] *edited full-length version with resource links.] Kathryn R. Burke

As we age, it’s inevitable that we will face the mortality issue. No one lives forever. The end can be quick, but more often, it comes with excruciating slowness. Good health descends into poor health, then into a physical reality that says we can no longer live at home. There comes a time when patient, caregiver, and family must make some tough decisions.

Amy and George, both in their seventies, have reached this point. George has Parkinsons. Amy is his caregiver. George outweighs her by 50 pounds. Suffering from her own age-related ailments and caring for George, Amy is worn out.

Their oldest daughter, JoAnne, is a nurse and lives here in town. When George fell recently—not for the first time—Amy called JoAnne. They got him up off the floor and into his chair. Nothing appeared to be broken but his spirit.

“Mom, Pop, this can’t go on, JoAnne said. “Mom can’t keep taking care of you here, Pop, or we’re going to lose her.” Amy started to protest, tears in her eyes. “You can’t, and you both know it,” JoAnne said. “It’s time we started looking at nursing homes.” George, who is also beginning to show signs of dementia, started to cry too.

They bundled George into the car and took him to the doctor to check for damage. After looking him over, the doctor said, “Amy, George, you need to make a decision. George needs more help than you can give him at home, Amy. He needs to be someplace where they have nursing care.”

JoAnne, knowing the inevitable was coming, had already begun her research. When she Googled “skilled nursing facilities Montrose CO,” various sources listed three for Montrose: Brookdale Sunrise Creek; San Juan Living Center; Valley Manor Care Center. Three more are within 30 miles: Colorow Care Center, Olathe; Willowtree Care Center, Delta; Horizons Health Care, Eckert.

All of them have their own websites, which she reviewed, but facility websites are geared toward marketing, with a goal of attracting (and retaining) more residents. JoAnne and her mother needed to know the actual (and perceived) reports and details about how facilities managed care and treated those who were living there.

She checked their U.S. News Health reviews and Medicare ‘star’ ratings,’ which run from 5-star (highest) to 1-star, and are based on onsite state health inspections, staffing ratings, and quality of care. JoAnne and her mother carefully reviewed Colorado state inspections and resulting health, safety, and occurrences reports. JoAnne visited each facility. She talked with current and former employees, whom she knew through work. Finally, she interviewed people whose family members had been, or currently were, residents there.

What she determined was discouraging. None of the facilities in Montrose made her short list, and the others had some drawbacks. (The reviews listed below are comprised from several public resources; beds, occupancy, star ratings, or other details may have changed since these reports were accessed.)

San Juan Living Center: 104 beds, 50% occupancy, Medicare/Medicaid certified. 2-star. Long list of complaints and health department citations over several years. Former and current employees and state reports reveal abusive and inappropriate staff behavior with subsequent suspension or removal. Residents and family members, who had observed frequent, serious infractions, suggested facility is under-staffed and aides poorly trained. Food was bad. They had also lost their VA contract. Staff interviews with state inspectors contain outright fabrications. (JoAnne had personal knowledge of one of those incidents, regarding a VA patient who had since passed).

Valley Manor: 101 beds, 70% occupied, M/M certified. 3-star. Numerous Occurrences reports. Interviews with resident families somewhat positive, including staffing, food, and activities. Facility is OK, but property is not attractive and in a commercial area. VM had obtained the VA contract after SJL lost it. VM didn’t make her short list.

Brookdale: private-pay senior living facility with a small memory-care unit, but no actual skilled nursing care. 3-star. A few Occurrence Reports. Residents and families said food was good and activities OK, but many, and several of JoAnne’s colleagues, felt CNA staff was uncaring and inadequate. She found this the most attractive property of the three in town, but comments about staff and lack of skilled nursing care took them off her list.

Colorow: 82-beds, 87% capacity, M/M certified. 4-star. Nine health surveys and 18 Occurrence Reports, 8 of them this year, which was a concern. She liked the staff and facility, and although not impressed with the grounds, she liked the location, which would be an easy drive for Amy to make visits. Colorow made her short list.

WillowTree: 80 beds, 55% occupancy, M/M certified. 5-star. Very few Occurrence Reports. Joanne liked the staff, who were open to new ideas and suggestions for programs to help residents. She heard no negative comments from employees. The facility is pleasant. Resident family interviews were positive. It is an easy drive from Montrose. WillowTree went on her short list.

Horizons: 79-beds, 78% occupancy, M/M certified. 4-star. 18 Occurrence reports this year and 22 prior years. 7 Health Surveys. Pretty location, pleasant staff, but too long a drive for Amy, especially on icy winter roads. Not a good choice.

After visiting them all again, JoAnne and Amy  chose Willow Tree, mainly because of proximity and staff. When they told George, he didn’t want to go, but he also understood why it was necessary. George has been taking care of Amy through 50 years of marriage. This is just another way of caring for her, albeit a huge one.  So, although he was reluctant, George made the move and is adapting.

I went with Amy last week to visit and have lunch. It’s hard to see George there. The ride home with Amy was sad. But she can visit often, and as we all knew… the time had come.

*Note: This is the original article. The format for the newspaper was limited to 600 words. The full article appears here with some of the resource links I used. There are many more!

When the time comes to consider a nursing home, do your research, visit facilities, talk with people and their families who are or have been residents. Get to know the staff. Stay for a meal, Observe activities. If you can’t do this yourself, or live too far away, ask a person you trust to do it for you. Don’t leave it to chance or depend solely on what you find online.

When reviewing Medicare ‘star’ ratings – different websites will give varying listings. Be sure to check all 4 categories for each rating, not just the ‘overall’ rating.

Learn the differences between skilled nursing facility, assisted living, and retirement facility; they are not the same and may not provide the services you need. You may also have to select a place further away than you would like, in order to find one that provides the right level of care.

For those without Internet or anyone who would like to talk with an advocate, the local ombudsman is a good resource. In the Montrose/Delta area, make contact through Region 10, Area Agency on Aging.

When the time comes, be prepared and make the best choice you can based on study and first-hand observation.

Resources
•  Medicare Star Ratings. What they are and how they are determined.
•  Health Care for People. Area nursing homes, ratings and descriptions.
•  Senior Advice.  How to Find Medicare Ratings for Nursing Homes
•  Senior Advice. Nursing homes, Montrose, Colo.
• Directory. Skilled Nursing Facilities. Montrose, Colo.
•  Colorado, Dept. of Health and Public Environment. Nursing Home Consumer Resources. (Includes inspections, occurrence findings, health, and safety reports. With link to Medicare.gov.)
•  Medicare.gov. Nursing homes. Explanations and facility program descriptions. Tells you how to do  your research!
•  Health Care for People. Directory of nursing home providers in Colorado. 
(Note, check to make sure they DO provide skilled nursing care, if that’s what you need.)
•  US. News, Health. Nursing homes search. 
•  Hospital Data. By state.  Profiles of thousands of hospitals, medical clinics, nursing homes and home health centers.
•  Nursing Home Diaries. Helpful and provocative articles. Definitely worth reading!
•  ADRC Resources. In Montrose, Region 10, Area Agency on Aging.


Kathryn R. Burke is a former caregiver, publisher, freelance writer, and author of several books on caregiving. She is also a successful businesswoman. Learn more about her at her website KathrynRBurke, San Juan Publishing, and here on her author’s page.

 

The Stress Response—good or bad?

Montrose Daily Press [August 14, 2016] Kathryn R. Burke

Stress happens when we are faced with a situation that causes a strong, emotional reaction. Sometimes stress can be positive, provide a little physical or mental boost, like when you are anticipating an athletic event or psyching yourself up to give a public presentation. Sometimes it can be annoying, but short-lived, like a fight with a spouse or partner, bad day at work, coming up short at the grocery check-out and having to put things back. But, when stress is ongoing with little or no relief in sight, it has long-term physical and mental consequences.

Human beings have a built-in fight-or-flight mechanism. This stress response initiates behaviors and physiological changes designed to increase survival: increased awareness, improved cognition, and even a state of euphoria.

Here’s how it works. The hypothalamus (part of the brain that regulates endocrine activity), and the pituitary gland instruct the adrenal glands to release a surge of hormones, including adrenaline (increases heart rate, elevates blood pressure, boosts energy) and cortisol, the ‘stress hormone’ (increases glucose in the bloodstream, alters immune system, suppresses the digestive system). The alarm mechanism triggered by these three glands, known collectively as the hypothalamic-pituitary-adrenal (HPA) Axis, initiates chemical, physical, emotional, and mental reactions your body that control mood, motivation and fear and helps you choose between fists or feet.

This is helpful if you’re facing a tiger about to attack. It’s helpful if you’re about to compete in a triathlon. When the stressful event is over, hormone levels return to normal (assuming the tiger didn’t eat you).

The stress response is not helpful when you can’t turn it off. Chronic stress constitutes a serious health risk. When it’s continuous, and you face it day in and day out, chronic stress can affect brain size and function. It can actually alter the brain if you don’t get it under control. A constant flow of cortisol and adrenalin will cause frustration, anger, anxiety, depression, digestive issues, weight gain (especially around the middle), sleeplessness, loneliness and isolation, and finally, memory and cognition impairment.

So how do we turn it off? We don’t really. When it’s ‘good,’ we use it. When it’s ‘bad stress,’ we try to manage it—concentrate on positives, subjugate negatives. Remain calm and steady, be flexible yet firm, curb emotions, regulate feelings. Unfortunately, in this instance, we don’t turn it off so much as absorb it, and that in itself is stressful.

Caregivers are especially vulnerable. They are often frustrated, almost always anxious, and often really angry. Sometimes a meltdown is inevitable. When enough is too much, and you experience rage and resentment, you might let go and vent those negative feelings. Picture a pressure cooker. If the pressure gets too high—the lid blows off. “You did this to yourself!” (I said this to my husband, whose neuropathy was likely brought on by an insatiable sweet tooth. He was pouring chocolate syrup on a banana—and the table, the chair, the carpet. I blew my lid.)

Meltdowns happen, but less often if you learn to manage stress in a healthy way: calm the mind (relaxation techniques), replenish depleted energy (sleep and diet), and rejuvenate the body (exercise). I often combat stress by taking a long walk—alone—in nature, preferably by water. The physical exercise calms my nerves and soothes my body. Paying attention to my surroundings and letting go of all other thoughts, especially those directly related to caregiving, eases my mind and brings peace and a sense of near-euphoria; I’m relieved of what felt like a burden just a short time before. I simply can’t feel bad when I feel so good.

When I return to caregiver duty, I am refreshed and I project that calmness to my husband. Actions mirror emotions and feelings. My behavior directs his reactions. And he responds accordingly. Peace reigns.

Kathryn R Burke is the author of The Caregiver’s Journey, Navigating the Path and The Caregiver’s Journey, Building Your Care Team. Both books are available at caregiver-journey.com, which also lists current speaking engagements and book signings.

The Elephant in the Room

Montrose Daily Press [June 5, 2015] Kathryn R. Burke

(Senior Sex-Ed)  Even if you’re in good health, after a certain age, talking about sex can be uncomfortable. If your doctor asks, “Do you?” or “How often?” you are likely to squirm, maybe duck the question, and mumble a noncommittal answer (women) or brag about sexual prowess (men, even with a missing prostate).

Older people do have sex—they really do! And most of the time, they manage just fine. Many nursing homes accommodate conjugal visits. Regardless of where ‘home’ is, though, what happens when desire dims, when illness or injury diminishes sexual performance, or in some cases, catapults into insatiability? What do you do when physical intimacy is no longer possible or when one partner wants it and the other doesn’t?

Jerry is a retired social worker and counselor, a compassionate, gentle soul whose career entailed helping people. Sara, his wife of 50 years, is a retired high school teacher. Both are well known and respected in the community. A few years ago, Jerry began to lose things and forget people and places. Dementia took a bizarre twist as Jerry became inappropriately affectionate to Sara—the kids remarked on it: lots of touching, squeezing, rubbing, and body contact. Sara wrote it off as Jerry feeling lost and unappreciated after retirement. Before long, though, Jerry was pawing Sara in public and making physical demands in private that were painful to a post-menopausal woman. Not sure how to handle Jerry’s escalating sexual needs, and embarrassed to talk about it, Sara finally confided in her daughter, who suggested she talk with her doctor—and Jerry’s.

Jerry’s doctor calmed his overactive libido with pharmaceuticals. He advocated strenuous exercise to mitigate sexual energy. Sara’s doctor suggested couples’ counseling. It all helps. No more public pawing! They still have sex, but not too often. Although Jerry’s cognitive capacity is failing, and he now is uncomfortable where there are ‘too many people,’ he and Sara are discovering ‘togetherness’ alternatives as their world shrinks. They take a scenic ride (Sara does the driving now) with a lunch stop. They walk in the park, holding hands. Sometimes they just stay in and watch a movie, snuggling on the sofa and sharing a bucket of popcorn.

JoAnne never really liked ‘sexual intercourse,’ as she termed it, so when Carl became impotent, she was secretly relieved. JoAnne was a ‘stare at the ceiling and hope it’s over soon’ kind of gal. Over the years, Carl may have suspected her lack of enthusiasm, but they never really discussed it. Then, Carl had a cardiac event followed by surgery and medication. The sex boat had sailed, and it wasn’t likely to drop anchor again. JoAnne was elated; she could stop pretending. Carl was devastated; he felt emasculated. Frustrated, he finally confided in his cardiac support group. Their advice was to seek counseling—for both of them.

They did, and the counselor referred them to a specialist who suggested they experiment with alternative forms of sexual stimulation. JoAnne refused to go after one session. Still reticent to talk about the problem, JoAnne did agree to see a therapist. She realized that because of a long-ago traumatic incident, she didn’t enjoy sex and probably never would. JoAnne also recognized that she resented having to be ‘mommy’ instead of ‘wife.’ Carl had always been the ‘strong’ one; now she was taking care of him instead of the other way around. Their new situation prompted honest and meaningful conversation—something they had forgotten how to do. Once JoAnne managed let go of the resentment (most of the time), and Carl dialed back on despair from not being able to have sex, they could talk about how to maintain a positive relationship without sexual intimacy. Hugs help. Both love history and travel. They’re headed off now on an educational National Geographic expedition. They are having fun, and genuinely enjoying one another—maybe for the first time in years!

Sex may be the elephant in the room, but it doesn’t have to be so big after all. When physical intimacy poses problems (can, can’t, don’t want to), talking it out will open the door to a new and improved relationship.

Kathryn R Burke is the author of The Caregiver’s Journey, Navigating the Path and The Caregiver’s Journey, Building Your Care Team. Both books are available at caregiver-journey.com, which also lists current speaking engagements and book signings.

The Big Bingo

Montrose Daily Press [June 16, 2016] Kathryn R. Burke

When Granny went to that big bingo in the sky, she left her 3 grandkids a winning card. Judy, the oldest, used hers to get a divorce—she was in a bad marriage—and to pay off the mortgage and raise her two kids. Jenny, the youngest, was just 17. She used her share to go to college. She is now a marriage and family therapist.

John, the middle kid, spent his on cocaine. While the money lasted, he was a popular guy. John picked up the tab for the whole party crowd. He found a wife along the way, who had even more problems than he did. They both started hitting the bottle as well as snorting coke and, not surprisingly, sunk into a deep drug depression together.

Granny’s daughter, JennaLee, has been a close friend of mine for a long time. I’ve known those kids since their diaper days. JennaLee’s husband, Dick, is a builder, and he’s a good man. They met in college, and she, a math major, helped run the business since they opened their own firm.

JennaLee and Dick hoped John would join them one day, make it a real family business. John was a whiz on the computer and had mastered Cad Cam by the time he was 15.

By the time he was 17, John was a junkie. He was a high school senior when he drew Granny’s bingo card. A buddy gave him his first hit. John got hooked, started skipping school, hanging out with his buds. His grades dropped and he was held back a year. John was a skateboarder. He wore those silly pants with the boxers hanging out the top and legs constricted by the knee-level crotch. He got tangled up and fell frequently, repeatedly hurting his back. The doctor prescribed painkillers; he should have prescribed common sense—for both John and his parents.

JennaLee blamed John’s tardiness and erratic behavior on prescription drugs. Blissfully unaware he was self-medicating, she kept enabling his bad behavior. Dick was aware, but turned a blind eye. Jenny, studying about family interactions, got it, but she didn’t want to make waves. Judy, after her own bad experiences with an alkie hubby, kept quiet too,

John continued downhill. He tried working at the firm, but was habitually late or didn’t show up at all. The police brought him home drunk or stoned several times. After he married and moved out, his parents rarely saw him, other than when they were called to bail him out or haul him to the hospital for detox.

John is 43 years old, now, and on the list for a liver transplant. He lives at home again, sleeping on an air mattress in his parent’s living room. The wife is gone—she took off when the money ran out. John can’t work; his brain is fried and his liver is shot. JennaLee and Dick are retired. She has a serious chronic disease. Their retirement income is taking a hit from her illness and John’s escalating medical expenses. Both parents take turns driving John to and from doctor appointments. For the first few years after he returned home, he slept most of the day, was still doing drugs, and continued to be a heavy drinker. That has stopped now, and John is in serious therapy and medical intervenetion for his former drug and alcohol abuse as he waits for a new liver. Which he can’t get until he goes through counseling. Which is difficult to attend when he keeps winding up back in the ER with yet another, associated bad-health issue. Meanwhile, JennLee is literally wearing herself out trying to manage his health and her own.

This story is not going to have a good ending. It raises a lot of questions we parents need to ask ourselves. What could/should JennaLee and Dick have done to help this kid? When should they have intervened, and why didn’t they? Both of John’s sisters could see and recognize what was happening to him. Why didn’t they speak up? When are children old enough to be responsible with money? Is it wise to bestow an inheritance with no restraints on how or when it will be used? Why didn’t the family doctor call ‘Foul!” when he surely saw where John was headed.


Kathryn R Burke is the author of The Caregiver’s Journey series:  Navigating the Path and Building Your Care Team. Both are available at caregiver-journey.com, which also lists current speaking engagements and book signings.

Rewards of Caregiving

From The Caregiver’s Handbook by Kathryn R. Burke

The rewards of Caregiving are many. You find strength you never knew you had.  You form a stronger bond with the one you care for, and you make friends of the people who help you care for them—and you. This journey teaches you patience and shows you what true compassion really means.  You learn what love is, how to share it, and how to find joy in surprising places. You learn the value of time—how to use it, not abuse it, and savor the moments life gives you.  In our hectic, fast-paced, digital world, these are lessons many of us have forgotten, if we ever knew them at all.

You learn about life, that it is fragile, it is precious, it is a gift,  and it may be gone all too soon for any us. The Caregiver’s Journey is really about sharing life and love—with your Careé, your Care Team, and all the wonderful, supportive people you meet as you go down the path.

Living with Alzheimer’s

Montrose Daily Press [May 22, 2015] Kathryn R. Burke

The brain scan last week told the story. Two years ago, my husband’s brain looked almost normal—a few blank spots here and there, but on the whole, very few ‘holes’. Last week, it looked like he had a head full of Swiss cheese—typical for someone who has Alzheimer’s Disease.

When he has memory gaps resulting in confusion as to time and place, I explain it to him this way: a normal brain is like a block of cheddar—pretty solid; an Alzheimer’s brain is like Swiss cheese—lots of holes. That pesky memory mouse pops up in one hole, then hides in another for a while. We never know when (or where) he will pop back up again.

“What day is it?” “What time is it?” These are pretty common short-term memory gaps, easily resolved with calendar and clock. Thinking he’s in another place and time, that’s a little harder to fathom. So, we get out the maps, peruse our memory book, go back in time for as long as the time takes until he comes back around to the here and now. Confusing, yes, but much easier to go along for the ride, because there is no reasoning with someone who has Alzheimer’s. To try is to frustrate you both. Might as well go with the flow and slip into their world for a while, because they can’t travel in yours.

Where he goes, and when, is interesting. What verbal triggers, visual cues, sent him back there? What did I do or say that might have caused it? Can I undo it or maybe even direct the destination with specific actions or words? When my husband has it somewhat together, we examine where he went in his mind, try to figure it out.

Eventually came a (dreaded, but not unexpected) moment when my husband didn’t recognize me. Right in the middle of supper, in the middle of a sentence, like somebody flipped a switch, he was no longer at our dining room table, but somewhere in Kansas, waiting to catch a flight to Wichita. “Really good food,” he said. “I like this restaurant.” The first time he did that, I thought he was kidding.

Nope. Next night he was in Toledo. After supper, he asked for a cab to the airport. I got it then, so I said it was too late to get a flight. “Is there is a motel nearby?” he asked. “I need a place to sleep.” “You are welcome to stay here,” I offered. He gratefully accepted, thanking me for my hospitality. When I led him into the bedroom, he noted, “This is a nice room, I think I’ve stayed here before.”

All this could be pretty scary—and it was. It might have sent me calling 911 for help—but I didn’t. What was happening was already in my ‘Get Prepared’ notebook I’d been working on for a few years.

After my husband’s initial dementia diagnosis, I began journaling his decline while learning all that I could about the disease and how to manage it as his Caregiver. I attended Alzheimer’s Organization classes at Mesa, signed up for Region 10’s REACH program, met with counselors, therapists, doctors, and nurses, and engaged a home care service. I read everything I could about AD and joined online forums, including agingcare.com, alzheimersreadingroom, Alzheimer’s Foundation (alzfdn.org), and more. I asked for help from my support group. Members are like family and are dealing with a range of disabilities and problems. They understand and their suggestions are invaluable.

You can’t fix AD. There is no cure. Yet. And, it’s terminal. What you can do is prepare yourself to be ready when that memory mouse pops up less and less and the Swiss cheese holes become so big there is no place left for it to hide.

Kathryn R. Burke is a spousal caregiver and the author of The Caregiver’s Journey, Navigating the Path, available at caregiver-journey.com

Update: He died two years after this article was published.It turns out that the final diagnosis was Lewy Body Disease, the second most common cause of dementia and almost always mis-diagnosed.  In it’s later stages, LBD and AD often co-occur.  Learn more here about LBD and diagnosis confusion.

Is it Alzheimer’s or Lewy Body?

Montrose Daily Press [March 19, 2017] Kathryn R. Burke

Do you know someone who exhibits fluctuating cognitive impairment?  One moment they seem crazy, then the next perfectly normal? And over time, the crazy seems to become more frequent and is augmented by delusional behavior? They see and hear things that aren’t really there. The diagnosis is dementia, with Alzheimer’s Disease (AD) the suspected cause. But, it Alzheimer’s or Lewy Body Dementia?

Is difficulty with mobility also a problem? Shuffling or wide-stanced gait, increasing frailness, rigid muscles, tremors, difficulty with small motor movements such as writing? This could be classified as Parkinson’s. But maybe it isn’t.

Progressive decline in mental ability and motor control (movement) may be caused by Lewy Body Disease (LBD). The disease is often mistaken for AD and goes undiagnosed, because many medical professionals are still not familiar with it. Yet, LBD affects an estimated 1.4 million individuals in the U.S.

LBD is the second most common form of degenerative dementia next to AD and is caused by presence of Lewy bodies (abnormal deposits of a protein called alpha synuclein in the brain). Regardless of the initial symptoms, over time LBD will develop cognitive, physical, sleep, and behavior disorders. Hallucinations, delusions, intermittent (and seemingly recoverable) memory loss, and insomnia are common symptoms.

Some people start out with a movement disorder leading to a diagnosis of Parkinson’s disease, then later develop dementia.  Others begin with a cognitive/memory disorder, often initially diagnosed as AD. But, when certain distinctive features become apparent, this leads to a diagnosis of LBD, and movement disorder develops later. A third, smaller group may first exhibit neuropsychiatric symptoms, which can include hallucinations, behavioral problems, and difficulty with complex mental activities.

If it’s LBD, eventually, all of the symptoms will develop.

Early diagnosis is crucial. Medicines used to treat AD or Parkinson’s may actually worsen symptoms. Certain drugs, like Haldol, must never be given. As the disease progresses, behavior issues and insomnia make it difficult to care for patients at home. Decreasing mobility increases fall risk.

LBD is insidious. Barely noticeable at first, as it progresses, both patient and caregiver are heartsick as symptoms develop. Unlike AD, with LBD, sufferers are aware of what is happening to them. And there is nothing anyone can do about it, except to offer understanding and provide a safe and calm environment. LBD is a Caregiver’s nightmare. It requires infinite patience laced with humor as well as acceptance. A Caregiver must also be an advocate, learning all they can about the disease since so little is known about it. Understanding LBD helps Caregivers manage the symptoms and maintain their own sanity.

To date, there are no successful treatments and no cure. LBD is fatal. Early symptoms, such as violent nightmares and REM sleep disturbance, may herald the disease as much as 25 years before the more obvious symptoms appear. Once the symptoms become readily apparent, the disease usually runs its course in five to seven years. The end can be remarkably like ALS, as the patient loses ability to walk, think, and eat.  Most sufferers don’t go the full course, however, and death is often caused from pneumonia (if wheel-chair bound and basically immobile) or complications from a fall (frequently a broken hip).

When the disease has been officially diagnosed, hospice can help. To learn more about LBD, contact the Lewy Body Organization (lbda.org), which offers advice, support, and resources.  Another good resource is Mayo Clinic. (mayoclinic.org/diseases-conditions/lewy-body-dementia)

Kathryn R Burke speaks and writes about Caregiving. She understands LBD; her husband recently succumbed to the disease. Kathryn shares experiences and resources and offers invaluable help at caregiver-journey.com.


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Are You There Yet?

Montrose Monitor [July 16, 2018] Kathryn R. Burke

“There are four kinds of people in this world. Those who have been caregivers. Those who currently are caregivers. Those who will be caregivers. And, those who will need caregivers.”
~ Rosalynn Carter, Former First Lady

Are we there yet? Are we?” That’s what my kids always asked about 15 minutes after we left on a road trip. And repeated, with increasing frequency, as we got further from home, but still had a long way to go.

“We aren’t there till we get there,” I would say. And, that’s pretty much the story of Caregiving. We aren’t there till we get there.

Are you there yet?
Has a recent diagnosis of a spouse, sibling, child, parent, or someone you care for or care about thrown you for a loop? If Caregiving is a new role, do you worry that you aren’t up to the job? Maybe you are already on the Caregiver’s Path. How far along are you? Perhaps you’ve been Caregiving for awhile, and you’re worn out, exhausted, feeling that your Careé (care recipient) is slowly killing the Caregiver—which would be you.

Traveling the Caregiver’s Path, we all go through stages, although they may come at different times for each of us. Regardless of where you are now or what lies ahead, our journey begins when we travel from Denial to Acceptance. Along the way, we will pass a lot of Checkpoints and hurdle a multitude of Mileposts.

Sometimes a Caregiver’s Journey is jump-started with no advance warning. When it’s sudden, like a traumatic accident with serious injury, and you take a call then head to the ER, there isn’t much time to think about what you will do down the road. It’s less about action than reaction. The same applies when first given an unexpected diagnosis of a daunting disease like pancreatic cancer or when abruptly advised that someone has suffered a paralyzing stroke or catastrophic war injury. You must deal with immediate concerns: paperwork, insurance companies, tracking down specialists, lining up physical and occupational therapy, who to care for the family if that person has a spouse or children at home. You are in orchestration mode, a director of care rather than a direct Caregiver.

More often, though, the Caregiver’s Journey is a gradual process. You are aware of someone’s decline and, probably with some trepidation, are observing signs suggesting you will have to step in soon, that they can’t go on as they are without help. It’s rather like watching the weather channel and knowing that a storm is predicted. But it isn’t here yet (thank goodness!).

Same goes with warning signs of an aging parent, spouse or sibling or someone diagnosed with a disease that will progress slowly. The outcome is fairly predictable. You may not quite know when the storm will hit full force, but you know it is coming. It’s sad, but it is not a surprise. You have time to prepare, to plan, to decide who, if not you, will be the Caregiver.

The road ahead
Either way—sudden event or gradual change—you are faced with some hard decisions. Will your Careé need to be placed in a facil¬ity? For how long? Can you bring them home? If so, who will care for them, and if you, how much care can you provide? Caregiving is exhausting both physi¬cally and emotionally. Are you up to it? Do you know where to find someone to come in and help you? How do/will you pay for it?

The Caregiving Journey is not all solid concrete. Some places are smooth, others are nasty to navigate. There are no locked doors or chain link fences holding you in. You are free to stay on the path or step off. Or fall off, if you are careless. The path has no guardrails. For each of us, our Caregiver’s Journey is an exercise in free will, an educational sojourn. We must take it on by choice, because we want to, not because we have to. Along the way you learn to view options as opportunities, develop the resilience needed to sustain you over the rough spots, and gain the knowledge you need to find your way.

Whatever you decide, to be a direct Caregiver or a director of Caregiving, a big question is: Who will pay for it and how? Caregiving is costly, and the cost is growing. In the next issue, we will talk about care costs and how to pay for them.

Kathryn (Kate) Burke is the author of the Caregiver’s Journey series of books, available here.

Get Down and Boogie!

Montrose Daily Press [July 22, 2018] Kathryn R. Burke

Turn off that TV. Climb out of that recliner. Get up, get out, and get dancing.

As people age, they tend to become more sedentary and socially withdrawn. Friends and family move away. Jobs end, and with retirement comes the loss of co-workers and common interests. For too many, the TV takes over, becoming a constant, mind-numbing companion.

A fun and exciting way to combat that self-induced isolation is to get out there and dance. Dance helps with a multitude of health issues, but it’s also a great people-meeter for those who are seeing the years speed up while activity levels slow down. Dance is a way to keep your body flexible while staying socially engaged.

Getting older doesn’t mean you stop moving. Or having fun. In truth it’s quite the opposite. The more you move, and the more you enjoy doing it, the better you feel—physically, psychologically, and emotionally. And, dancing is one of the best ways to put your body in motion.

From a strictly therapeutic perspective, scientific studies have shown that dancing and Dance Movement Therapy (DMT) are especially beneficial for clinical problems confronting with the elderly—balance, heart health, quality of life, depression and anxiety. And, dance moves are a lot healthier (and less expensive) than taking bunch of pills.

More people are living longer and our aging population is expanding. Alternative, non-medical approaches to better health, such as dance movement therapy (DMT), are gaining in popularity, because they provide social stimulation and participation in addition to proven health benefits. Dance comes with music, and music is a communication tool that knows no age barriers.

According to Psychology Today movement in a dance therapy setting is more than just exercise. The actions, fluidity, and movement are interpreted more like a language. DMT has been especially helpful for people with dementia or Parkinson’s. When exposed to music and a dance session, often people who could barely communicate or walk start singing and dancing.

Dance is definitely a panacea for loneliness and health issues related to aging. But you don’t have to be lonely, elderly or infirm to enjoy the benefits. Any age, any state of health, dance moves just make you feel good.

Don’t know how to dance? Afraid to get out there and make a spectacle of your self? Just plain shy? Not a problem. It’s never too late to learn. Sign up for dance lessons.

Here in Montrose, the San Juan Dance Club (SJDC) meets Thursdays from 6:45-8 p.m. at the Lions Park Clubhouse. Instructor Ron Black teaches two-step, waltz, swing, even tango. “We have about 16-24 people for each class,” he says. “They learn one dance in four lessons, then join in a one-hour group workshop that involves various dance moves.” Black also gives private lessons at the Montrose Elk’s Club. (Information, call 970-708-8333 or email thesjdanceco@gmail.com.)

One you’ve got your boogie on, where do you practice it? Here, in Montrose, dances with live music are held at the Senior Center (Montrose Pavilion) on the 2nd and 4th Saturday. (Check the website’s event calendar, http://www.montrosepavilion.org) SJDC’S Ron Black also sends out a weekly newsletter listing dance venues around the Western Slope. We’ve got some clubs here in town with live music. Intrinzik at 512 E. Main in Montrose has live music almost every night. It caters to a younger crowd, but as the website says: “ Music is definitely an essential part of the human experience.”

You can be any age to enjoy that experience! “If you can walk, you can dance,” suggests an African proverb. So, put on your dancing shoes, and get out there and boogie!

Kathryn R. Burke is a former caregiver, writer, and Montrose businesswoman. Learn more about her at http://kathrynrburke.com/ and http://caregiver-journey.com/