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 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.

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.

Care for the Caregiver

Montrose Daily Press [September 24, 2017] Kathryn R Burke

Caregivers need care, too—sometimes even more than their Careé (the person they care for). When they don’t get it they are susceptible to Caregiver Burnout—a very real, debilitating medical and psychological condition brought on by unrelieved stress. Care for the caregiver is often forgotten in the emotional and physical demands of caregiving.

Caregivers face changes in family dynamics, financial problems, emotional distress, and time constraints trying to juggle personal life and work with constant caregiving. Marcie is a perfect example. Her husband, Alex, is chronically ill. They have two teenage children—one just learning to drive. Marcie’s mentally-impaired mother lives with them. Care for the caregiver just wasn’t in the mix. Marcie was in trouble.

Marcie’s friends saw the signs. If she had visited with her family doctor, he would have, too. Burning the candle at both ends, Marcie suffered from sleep deprivation, overwhelming fatigue, and energy loss. She withdrew from friends and non-essential activities. She was depressed and worried about money. The kids felt neglected. Marcie didn’t have enough time to spend with any of them. Guilt, anxiety, and stress made her cranky and irritable. Grandma can behave badly and the kids started acting out when she did. Alex needs help feeding himself. Mealtimes were a mess—literally. Marcie’s appetite disappeared. She lost weight.

Migraines and stomachaches resulting from no sleep, poor diet, and constant anxiety sent Marcie to the hospital. Which was a blessing, because she finally got some help. The doctor diagnosed Caregiver Burnout. A nutritionist suggested a healthy diet plan. A physical therapist put her on exercise regimen. While she was hospitalized, friends, family, and church members stepped in to help with Alex and her mom, and realized the enormity of what Marcie had been handling alone.

John, a social worker, introduced Marcie to a support group, whose members were on similar paths. They suggested she see an options counselor at Region 10, who provided resources and helped Marcie find homemaker and home-health agencies, which could take over some of the duties that overwhelmed her. The counselor also advised her on ways to cover the agency costs.

Alex, is a vet. Marcie discovered the VA has program that provide homemaker aides. The house was clean again! Alex’s doctor put him on hospice palliative care, which meant regular home visits from a nurse and on-call help when needed. Volunteers and VA-paid aides stayed with Alex while Marcie was at work, helping with household chores and running errands, so when she got home, so she had some free time to spend with her family. Marcie enrolled her mother in adult day care, which made a huge improvement at home. The kids had quiet time for homework after school, instead of the craziness that kept them away from home.

Marcie had vacation time coming. She had planned to spend it cleaning house and catching up on chores. But with the homemaker aides to do it for her, she spent the week indulging in personal care, walking at the park, sitting by the river with a book, and meditating—a new technique taught her by a support group member, Janine, who had beome a good friend. People who understand what you are going through as a caregiver are worth their weight in gold. When Marcie’s vacation days were over, she was rested and her house sparkled.

Fortunately, Marcie did not fall into the bad habit of self-medicating (alcohol and drugs), which plagues too many caregivers. She visits with a psychologist occasionally, who taught her relaxation techniques. Marcie attends support group faithfully and makes time to spend with Janine. They enjoy activities that are fun and interesting. They are taking a jewelry-making class and joined the photography club.

Marcie learned some important lessons, ones that we caregivers need to remember, practices we need to follow to stay healthy.
1. Make time for yourself — an hour, a day, more when you can manage it.
2. Get help. Don’t try to do it all yourself. Delegate.
3. Join a support group.
4. Research, learn more about your careé’s disease and how to manage it.
5. Advocate. Don’t be afraid to speak up about what’s best, even medically, for your Careé.
6. Reach out to disease-related organizations, forums, and support groups—in person, online.
7. Engage in companionship activities with your Careé; emotional ‘caring’ is important, too.
8. Engage in personal activities that have nothing to do with caregiving. Give yourself a mental break.
9. Eat right, exercise, get out in nature, take care of your physical health.
10.Stay positive. Positivity is the most powerful tool we caregivers have.

Despite the stress and constraints of caregiving, Marcie has found she has options, and you will too, if you get help and stay positive.


Kathryn R. Burke is the author of the Caregiver Journey series. She facilitates the Western Colorado Lewy Body & Dementia Support Group. Learn more at caregiver-journey.com.

Food and Caregiving Companionship

Montrose Daily Press [February 4, 2018] Kathryn R. Burke

I grew up in a family where we all ate supper together. No cell phones, iPads, and iPods; we actually talked with one another—face-to-face. Imagine that! And, we looked forward to that time of the day when we could come together as a family and share the day’s experiences. That tradition continued as I raised children of my own. Later, when faced with the increasing demands of a spousal caregiver, I was grateful to be able to continue making food a wonderful source of coping and companionship.

It begins with purchasing food. You can’t eat it until you buy it, and for some of us, grocery shopping, is a chore to be dreaded, avoided, and usually done in a rush. It doesn’t have to be this way! Grocery shopping can be a pleasure trip if you plan ahead and take the time to enjoy the experience once you get there. All those beautiful food displays…the enticing aromas from the bakery department…those roasts, the baked chicken, the deli…oh my! Your mouth waters when you think of what you could do with all that lovely food.

Yes, but if you buy it, will they eat it when you get it home? They (probably) will—if you make out the list together and plan ahead for meals that include things people like. (And, maybe sneak in a few things they don’t like—I hide spinach in omelettes and prepared ‘blended parrot’ for my husband, which is a combo of colorful (healthy) sautéed veggies. My kids thought asparagus was ‘baby trees.’ If they ‘name’ it, they are more likely to eat it.

When you get it home, instead of lugging the bags in by yourself, and complaining about it, enlist the aid of those you care for. Let the kids help carry the bags. Let mom or grandma sort and put away. Let hubby haul, and if he is using a walker, like mine was near the end, let the walker to the work. Do you know a walker can fit three cloth bags on the seat, and a wheelchair will carry five or more?

When its time to prep and prepare, make it a companionship activity. Let them help wash, chop, bag, put things in freezer bags or storage containers. One woman told me, “I don’t want him in the kitchen; he just gets I my way!” So, put him at the dining room table with a cutting board and a paring knife and give him some veggies to chop up. “Mooommm, I don’t like celery.” Put some chocolate peanut butter on it, and that tune soon changes. “Oh, sweetie,” says your mom, “We never did it that way.” Then, let her show you ‘the way’ she did it, and do the fixing.

Preparing and cooking a meal is a great way to have a conversation, bring back pleasant memories of family meals, maybe eating out, or favorite foods while growing up, or in the case of a parent, cooking for the family. It’s an opportunity for companionship. Don’t shut them out; let them in.

Over the years, as wife, mother, grandaughter, and Caregiver, I have found food provides a strong, cohesive base of Caregiving Companionship for me and my family. Shopping for food, putting it away, planning meals, fixing food together, and enjoying sitting down together to eat it has given us hours of pleasure and ‘together time.’

Kathryn R. Burke writer, public speaker, and author of the Caregiver’s Journey books, Navigating the PathBuilding Your Care Team, and The Caregiver’s Cookbook. Contact her here to order books.

Grieving is a personal process, especially during the holidays

Montrose Daily Press [December 24, 2017] Kathryn R. Burke

One year ago, four days before Christmas, my world fell apart. My husband’s illness had escalated to the point where I could no longer manage at home; we both wound up in the hospital. They sent me home and him to a nursing home—an inevitable one-way journey, but still one we were not prepared for. Nobody is, really.

A new kind of grieving began. Grief for separation, for loss of the familiar, and fear of the future. Grief for what had been and could never be again. It was a difficult Christmas. We were fortunate to live near the facility, so I could—literally—run back and forth and visit frequently. I picked him up and took him to church, out to lunch, and to the park. But I couldn’t be with him all the time, like we had been for nearly 30 years.

It hurt emotionally, psychologically, and physically. I took on more work to pay our own caregivers to augment his care. Facility staff was unfamiliar with his disease—Lewy Body Dementia with Parkinson’s, and thus, ill-equipped to manage it. He was a vet, but the home-care benefits stopped when he stopped living at home. So, I had to work harder and became even more exhausted. Looking back, I have absolutely no clue how I managed to do it all.

Christmas was odd last year. Not familiar or cozy. Not joyous. It was scary and painful. We spent as much time together as we could. We reminisced, looked at slides, and browsed photo albums of Christmases past. But you can’t go back. And we didn’t see how we could go forward either.

He died in April. I’m still getting used to it.

This Christmas it’s just me and our cat. Still living near the facility. Every time I drive by, or hear a siren, tears blur my eyes. When I see the neighborhood Christmas lights, I feel sad. When I go to a Christmas concert at the church, I start to sniffle and cry. Fennie (our cat) and I eat by candelight; his place is empty. We sit by a fire after supper, listening to music—me in my chair, she in his. But he isn’t there to cuddle her. I decorated the house, put up the tree—Fennie only tried to climb it once; her heart wasn’t in it this year. We left some of his train books and railroad mementos scattered around—part of the décor. Next year, they may not be so prominent. This year, it helps keep him closer.

So, yes, I am grieving a loss, but also grateful for it. His quality of life was so sad. He just wanted to get out and move on. And so he did. He’s gone, and I’m getting on with my life, adjusting to an ‘after-caregiving’ mode. I can’t go back. But I can go forward.

I’m alone, but not really lonely. I’m tired a lot, but no longer exhausted. Personal health issues put on hold for several years caught up with me. I just had surgery last week, and he isn’t here to hold my hand and offer comfort, as we both did for one another for so long. But, I’ll manage.

I miss him.

Grieving is such a personal process. Everybody does it differently. And, it is especially intense at holiday time, a traditional family time. It’s like a maze. You have to find your way through it and out the other side. I’m still a little lost, but I know I’ll find my way out.

Kathryn R. Burke is the author of the Caregiver’s Journey books and facilitator of Western Colorado Lewy Body, Alzheimer’s and  Dementia Caregivers Support Group, meeting twice-monthly  at Montrose Hospital. [Details here] Burke is the author of the Caregiver’s Journey series, Navigating the Path, and Building Your Care Team, and The Caregiver’s Cookbook.  All three are  books available here.

Getting on When They’re Gone

Montrose Daily Press [March 4, 2018] Kathryn R. Burke

When they’re gone, time flies; time drags. Time plays tricks on your hearing, your memory, your mind. Yesterday the hot water heater started leaking. I asked my husband what to do about it. No answer, of course. He wasn’t here. He’s been gone 11 months and 20 days. That conversation didn’t exist in real time. I called the plumber.

Last week, clear as day, I heard my husband say, “Did you remember to check the oil?” Of course I didn’t. He always does —make that ‘did’—that. My assistant and I, and the cat, were all back in the office, and we heard him speaking out loud in the living room . . . clear as day. “What did he say,” my daughter texted when I told her. I texted back: idk.

He – we – are in a state of presence – existing or being present, without actually being seen. At least I can’t ‘see’ him. But I know he’s around. Wherever he is, he is somehow—sometimes, but not all of the time—in tune with wherever I am. He seems to ‘sense’ something before it happens. A couple times, I’ve felt a warning tap on my shoulder, or a comforting pat as well—and always at an appropriate time. A couple days ago, sitting by the fire (which he always loved to do) with my cat in my lap, she suddenly started staring over my shoulder, watching something. Somebody? Spooky. I actually turned my cell phone to ‘selfie’ and used it to look over my shoulder. Nothing—that I could see, anyway. But the cat could.

Adjusting to the loss of someone you’ve been close to for so long takes time. The more time that passes, the further away they seem to go, and the easier it is to deal with the day-to-day things you used to handle together. Parent or partner, friend or family, the acceptance of loss takes pretty much the same course: gradually you learn to live without them. You gain strength, take on responsibility, figure out what to do. By yourself. You call the plumber.

It’s important to move on, and not to wallow in grief, although that often happens in the early days after death. Maybe not at first, when post-death arrangements consume you. But over time, the sympathy cards stop coming, neighbors cease bringing food, and family and friends don’t call as often to ask, “Are you doing OK?” Eventually, they stop asking.

Then there is the void. Things you did together with those same folks—family, friends, neighbors—slowly grind to a halt. If you are widowed, it is an especially lonely time, because you are no longer part of a couple, part of a familiar social group. You’re the ‘oddball’ now, the ‘third wheel,’ and it’s difficult to try to maintain those relationships. You realize that to ‘get on when their gone’ means making new friends, finding new interests.

And this can be a saving grace. Really. This is a time you can pursue things you’ve always wanted to do, but never felt comfortable doing because it didn’t ‘fit’ the lifestyle you and your lost loved one had in common. It’s a time to look forward, while remembering the past. They’ll always be with you, but their past presence fades as your present becomes a new reality, and you master the ability to ‘get on when they’re gone.’

Kathryn R. Burke is a motivational speaker and author of the Caregiver’s Journey series. Read more about her and her books, now used nationwide as teaching tools, at caregiver-journey.com. Meet her at the Caregiver Summit in June 27, 2018 sponsored by Region 10 ADRC. Caregiver’s Journey and San Juan Publishing will have a vendor table, and will also have a table about Lewy Body Disease.