Apathy. It’s one of the approximately 500 symptoms you might well find under theumbrella term of dementia. According to Microsoft Word, apathy’s synonyms include lethargy, boredom, unconcern, droopiness, and dispiritedness. For a person with dementia, this state of being may result in the inability to initiate activity, and/or spontaneous thought. Many of us, when feeling bored or droopy, have the ability to switch gears, maybe go for a walk, call a friend, or otherwise think of some activity to cheer ourselves up. Persons with dementia may not be equipped to do that. Instead, they’ll need structure, routine and activities figured out by others.
Initiating activity involves planning, organization and motivation. Planning can be complicated, involving lots of steps. For a person with Alzheimer’s disease (whose short-term memory is very limited) or for a person with frontotemporal degeneration (whose executive function is seriously compromised) “complicated” can easily translate into “overwhelming”. When things are too hard for a brain with dementia, frustration often results, and motivation dissipates.
To be sure, it can be hard to observe and absorb these changes when a family member was formerly a champion self- starter; creative and keeping busy all the time. We have to remember that the changes of dementia are disease-related, and brain-based. It is not because the person is just being stubborn, difficult, rebellious, or is out to exasperate us. The person is simply reacting to their situation with the brain that they have to work with today, not from the brain they used to have. We must have compassion for the reality of a broken brain, if we are to give care and responses that will encourage and accept the person where they are at, and in so doing continue to strengthen our relationship with that person, and best serve their needs.
Here are ten tips from the Association for Frontotemporal Degeneration about what you as a care partner can try when your family member with dementia exhibits apathy. These suggestions were created specifically for persons who care for those with frontotemporal degeneration, but I believe there is much here that can be helpful to those who care for persons living with other forms of dementia as well:
--Marysue Moses, Ebenezer Dimensions Program Coordinator
I’d like to invite you to a couple exercises.
First, take a moment to look around before reading on. What art is visible to you, right now, from where you are? What does it mean? And what does it mean in that particular place? Is it office art? Is it something you picked out for your home? What is the artwork instilling or communicating to you?
These are the sorts of questions our residents have been asking—and thoughtfully responding to—in our recently launched "Art, Culture, and Meaning" class, offered through the Spiritual Health Department at Aurora. Residents have weighed in on what they think and about ruined structures, Minneapolis Craftsman style bungalows, Victorian poetry, and Impressionist art. We together have asked: Are ruins monuments to the past or obstacles to the future? What were the ideals behind Craftsman designs, and what does it mean to tear them down? Why do the ordinary scenes of picnics, hay bales, and tea times move us? And why did people paint these scenes in the first place?
Second, take a moment to think about someone that was important to you and who left a lasting positive impact on your life. What did they do that impacted you? What gifts did they give you—in the broad sense of gift? Did they facilitate your curiosity? Encourage your sense of adventure? Provide a for you a place of hospitality and acceptance? How did that gift resonate in your life? How do you steward the legacies that have been bequeathed to you?
Here again, residents are invited to share just such stories in the newly begun “Reminiscence Group.” In telling such stories, we remember our connectedness with others, we remember the gifts we have been given, and the gifts we have have to give in our acts of care, comfort, and encouragement.
If it seems odd that these two groups fall under the umbrella of “Spiritual Health” offerings, consider that these are ultimately conversations about values, meaning, relationships, gratitude, and blessing. In the “Arts, Culture, and Meaning” sessions, participants wonder about the values artists, the viewers (then and there and us today), and their respective cultures. In conversation, they can renew clarity about their own values and purpose. In “Reminiscence Group” participants tap into the interconnectedness of their own history while simultaneously connecting with others.
Furthermore, in cultivating curiosity about the world and people around us the world come alive. There is an aesthetic conversation happening all around us all the time, wherever there is art—in all its myriad forms. If the “Art, Culture, and Meaning” class reminds us that the physical space around us is rich with meaning, our “Reminiscence Class” highlights the richness of the lives of the people around us.
It is my hope as facilitator that these opportunities of discussion and these acts of sharing our stories might renew our sense of wonder, delight, and gratitude. These exercises remind us the world is awash in meaning and that every individual’s life consists of remarkable stories that are worth hearing.
This is true for everyone, everywhere. So, I will leave you with these last questions, reader: what are the values around you? And what story do you need to tell? And whose stories do you need to hear?
By: Rev. Jeff Challberg, Director of Spiritual Health at Aurora on France
A guide to the challenges (and rewards) ahead
These tips come to you from Cindy Swanson, a personal advisor for clients of Fairview’s service.
1. The situation could be more demanding than you thought.
Your aging relative or friend’s need for help has probably been coming on gradually, as they’ve become less capable of managing the demands of daily life–like keeping up the house.
“You’ve been to see your parents and they worked hard to get it ready for a visit,” Cindy says, “but you may not notice that newspaper stack is getting higher and higher, and the recycling isn’t going out. When we’re going to our parents’ home, that’s just the status quo. We’re sometimes not realizing it’s getting less clean and less organized."
It may be hard for them to admit to you they can’t mow the yard anymore or lift the ladder to clean out the gutters. So be prepared, once you’ve committed to start helping a senior, to discover that they may have let things go more than you knew.
2. You may need to set some realistic boundaries.
“A common thing that happens is that someone’s in the hospital–maybe it’s mom’s first fall–and she’ll tell the social worker: ‘My daughter can stop by every night after work and bring me meals.’ It’s not uncommon for someone in the hospital to say they have family that can do all this without talking to the family,” Cindy says. “The daughter will say: ‘I live 30 miles away on the other side of the cities. It’ll take me an hour to get there after work. I can’t do that.’ What a parent sees as realistic may not be the same as reality.’ "
Especially if you’re juggling a career and your own family on top of helping a parent stay in their own home, you may find yourself spread a little thin.
“There’s a point where you become resentful of having to do that,” Cindy says. “You need to figure out how much you can do without creating negativity in your life."
3. Even if someone has asked for your help, they may not always like it.
“No matter what your age, your parent always sees you as their child. You’re still their little girl or boy and they want the authority,” Cindy says. “They’ve been the one giving you advice for 30 or 40 years.”
This sudden role reversal can be difficult for them, and they’re not always going to agree with how you want to do things. Though you can’t control your parents’ feelings, you can work on yours.
“Sometimes we don’t realize our own attitude coming in: ‘Oh, my gosh. I have to go over to mom’s house and I know it’s going to be a disaster.’ Instead, tell yourself: ‘I know I have to clean the house. Today’s a beautiful day. I think I’ll open up the windows and it’ll be refreshing. I can handle this.’ ”
4. Your senior’s new situation may reignite old family tensions.
What’s happening with your parents in their later years is emotional enough, but coming to a consensus about what to do can be rough on even the tightest of siblings.
Cindy describes a typical scenario: “We all know how our family operates. There’s nothing really happening, but there may be underlying tensions that naturally exist. Maybe the oldest son sees the younger son as always getting away with things he can’t. What happens under stress or in crisis is those things blossom.”
Even if you agree to be the main caregiver at the start, you may end up feeling like your siblings aren’t pitching in enough. They may feel like they aren’t getting enough of a say. It’s easy in these situations to revert to old childhood patterns and bring up old hurts.
Cindy or one of our other Caregiver Assurance advisors can help you manage a family conference to work through some of those issues.
5. Caregiving can take a toll on your work life.
Cindy knows a thing or two about that. Not only has she helped coach people through this, but she has firsthand experience. She helped take care of her parents and her husband’s parents.
“What happens is, you spend your whole lunch hour calling people, then you go back to work and you’re waiting for those callbacks. If you’re trying to do a report and making calls for your parent, your 8 to 5 schedule might become 8 to 7. Or you say, ‘I’ll do it at home,’ and you’re sitting there doing that report at 11 at night. How much sleep do you get?”
“There I was, caregiving for my in-laws and my parents, all four of them, trying to keep track of doctor appointments, who was needing services, who needed home care,” Cindy says. “And I was holding a mid-management position in a hospital. It wasn’t realistic that I could juggle it all.”
6. You’ll need to learn things you never needed to know before.
At your age, you may not know how often an older person should get a colonoscopy. Adult day care may be a complete mystery to you. And you certainly haven’t spent a lot of time investigating how to buy a Medicare plan.
“You’re going to run into a whole lot of things you’ve never dealt with before,” Cindy says. “Things that even a college-educated person is going to have difficulty with: Looking at your parent’s financial situation and how to deal with that. Finding financial planners or attorneys, somebody who understands elder law. That’s why you’d connect with a program like us. I know some things myself, and I know several reputable firms in the Twin Cities.”
7. You’re a giver, so beware of neglecting yourself.
People who take on the role of caring for an elderly relative may naturally be the type of person who thinks of everyone else’s needs before their own. But that can last only so long.
Cindy paints a picture of life as four glasses of water and a pitcher: “Your glasses might be your husband, your son, your 14-year-old-daughter and your parents. You keep everybody’s glass full, but where’s the pitcher for you? People keep pouring, and pretty soon the pitcher’s empty.”
Keeping your own glass full is something the personal advisors at Caregiver Assurance can help with.
“There was a time when it wasn’t accepted that you would put yourself first,” Cindy says. “It’s not about putting yourself first, but doing your caregiving AND knowing how to take care of yourself.”
8. Caring for a senior may be the most rewarding thing you’ll ever do.
That reward could be as simple as spending more time with your loved one and finally hearing the story behind that one photo in the dining room. It can be the peace of mind knowing that they’re safer when you check on them every day. It can be giving back to somebody who has given so much to you.
“My dad never wanted to go into a nursing home,” Cindy says. “Feeling that I was honoring his wishes, I look back at it and I feel lucky.”
No matter how frustrating or rewarding it is to help an aging loved one, you don’t have to do it alone.
“There isn’t a classroom you can go to and learn all of this,” Cindy says. “Whatever the journey is, there’s help. If you have to make a right turn, there are people who are able to help you along. That’s what we’re trying to do here at Caregiver Assurance.”
Find out how Caregiver Assurance can give you the support and resources you need to help an aging loved one.
Green beer? Green rivers? Green clovers? What does any of it have to do with Spirituality? When I lived in Chicago for many years I never ceased to be amazed when every March 17, Chicagoans would turn the river winding through the city a brilliant emerald green. Countless Irish Americans in the city would wear green from head to toe to honor the memory of their patron saint, St. Patrick. Every year I found it intriguing and endearing as the Irish American Catholics in my neighborhood would petition the Roman Catholic Cardinal for a special dispensation during Lent so that they could enjoy their favorite green beverages!
Yes, St. Patrick’s Day is nearly upon us. As we await the coming of Leprechauns and green beer, we also look forward to the symbolism of the clover leaf – one with three leaves and not four. Three leaf clovers are used to teach the faithful about the “Trinity” – the three-fold understanding of the nature of God. But what I find most intriguing is how so many folks happily become “Irish” for a day. Only a few generations ago, signs would be in so many stores that stated plainly “Irish need not apply.” Today to be Irish and celebrate St. Patrick’s Day is a great source of pride. And even more so, it is a day to welcome with generosity and openness anyone who dons the green. What a wonderful ecumenical Spirit! What a change!
We see this, too, as many of us embrace the Mexican traditions of “Cinco De Mayo” and Day of the Dead. Or marking Hanukah or eating the Seder with Jewish brothers and sisters. I wonder how long it will be before the month long Muslim observance of Ramadan with its daily fasting and nightly celebrations will also be embraced more widely. I love that these cultures and traditions are becoming so engrained and incorporated into our communities and consciousness. No doubt this same process of blending happened with my beloved Swedish heritage with our celebration of St. Lucy in December and the gourmet dish of Lutefisk!
I am thankful that the signs no longer say, “Irish Need Not Apply”, but have evolved into “Everyone Is welcome To Be Irish for a Day.” That is a wonderful spirit of ecumenism. The challenge, of course, is to not only join in the green beer or green clothes and not trivialize or colonize other ethnic and culture traditions. I want not only to experience Cinco de Mayo or St. Patrick’s Day with a taco or green beverage, but to gain a deep appreciation of the Mexican or Irish Cultures and how these great events are woven into the fabric of their cultures.
Article by: Chaplain Chris Beckman, Director of Spirtual Health Services at Ebenezer Ridges Campus
Eyesight is a gift often taken for granted. As we age, our eyesight can easily deteriorate. There are different kinds of eye diseases. Age related macular degeneration, is one of the most common eye diseases. . Taking precautions early is a great way to prevent disease from progressing too quickly and sometimes even from starting.
Age related macular degeneration is a common eye condition, and leading cause of vision loss in people over the age of 50. It causes damage to the macula, the area needed for sharp, central vision which lets us see objects straight ahead. The disease varies in how quickly it can progress and can result in loss of vision in 1 or both eyes. Objects may appear to be less bright, or blurred in the center.
This at risk for macular degeneration include individuals who smoke, who are Caucasian, and those who have family members who have had macular degeneration.
We can help our eye health, and slowing of macular degeneration by avoiding smoking, exercising regularly, maintaining normal blood pressure and cholesterol levels as well as eating a healthy diet rich in green leafy vegetables, and fish.
Research has shown a combination of Vitamin C, Vitamin E, beta carotene, zinc, and copper have proven effective to reduce the risk of age related macular degeneration.By adding lutein and zeaxanthin your chances of slowing this disease improve even more. These vitamin mineral combinations are those found in the dark green leafy vegetables and fruits as well as in fish. If you are not able to consume these items regularly, talk to your healthcare provider or pharmacist about a specific eye health supplement that may be right for you.
As with any medication, consult your own health care team to assure safety of the products for you specifically.
Entering my father’s house, I shed my coat, my scarf, my gloves, and step out of my boots. Then I turn the corner and see a chickadee through the window, cracking through sunflower seeds in zero degree weather. The chickadee is a familiar sight to me—but it remains a marvel. How can something so small survive out there?
For many of us, winter after the holiday season becomes something to get through. As the lights and decorations come down, the early arriving night presents us with long hours of lonely darkness. Snow and ice (and expectations of snow or ice) make commutes longer and more anxious. Lingering cold exhorts us to stay indoors with windows shut and barely holding drafts at bay.
Though perhaps not as pleasant as the spirituality of feasting that fills early winter, there is spirituality to this seasonal endurance. Even buffered as we are from winter’s power, winter—as beautiful as it can be—still visually remains a season of scarcity, barrenness, and mortality. It is a reminder that hard times simply arrive from outside our control, and they remain longer than we would prefer. Late winter is a lot like grief.
We dwell in it, and find ourselves cooped up with our belongings, our thoughts, and with each other. And so, late-winter becomes a time of cleaning out the house, having poignant conversations and introspection. Like grief.
It becomes an exercise in taking stock and evaluating priorities. Like grief.
It becomes a time of noticing and appreciation. Like grief.
So that I can be stopped short when I see again that, in the leafless, flowerless lilacs, the chickadees are thriving in the short hours of winter sun. They sing that spring will come again, like tiny, bold prophets. Like hope.
-Rev. Jeff Challberg, Director of Spiritual Health, Aurora on France
One out of three seniors will fall this year, but less than half will tell family or physicians. Falls are the number one cause of injuries in older adults, resulting in hip fractures, cuts, and even serious head and brain injuries that can be fatal. And even when there’s no serious injury, a fall can still be so frightening that seniors may avoid certain activities because they’re afraid they’ll fall again.
We're not saying that you need to completely remodel your home or downsize to prevent falls. but you can make your home safe from falls with just a few basic changes. Here are just a few ways:
“Well, of course you_________________”
If you have ever surfed websites of senior housing options, I bet you have frequently run into the term “person-centered care” which we owe to Dr. Thomas Kitwood, a British physician who focused on the importance of remembering that a person with dementia is first and foremost a PERSON with particular needs, challenges, strengths and preferences.
Cannot expect persons with dementia to think like we do
It is also due to Dr. Kitwood’s brilliant work that nurses are no longer trained to try to orient persons with dementia to reality, e.g., “No, no, Mrs. Jones, it’s 2017 now – actually your mother is dead, and the farm has been sold!” Thank goodness for Tom Kitwood! He helped us understand that we cannot expect persons with dementia to think like we do. As I’ve heard nursing home operator and author Megan Carnarius say, “We need to cross to their side of the street.” People with dementia simply cannot come over to ours. We need to give them responses that make sense with the way in which they understand the world.
Dementia expert Elion Caspi encourages us to also think about dementia care as “relationship-based care.” If we do not maintain relationship and genuine connection with persons with dementia, trust wears thin. As a result, it becomes challenging for persons with dementia to accept the care they need.
Lost in the grief
It is completely understandable that care partners are exhausted. They often get caught up in the grief of losing the precise relationship they had with their loved one before dementia was part of the picture. All too often, people become angry and bitter, even to the point of saying things such as “Alzheimer’s is worse than death.” That is a direct quote from the despondent husband of a wonderfully clever woman; let’s call her “Pam,” with whom I worked for some years. What a heartbreaking pronouncement from her husband! At this point, Pam still loved to share opinions and insight, sing Broadway tunes, reminisce, walk, dance, and hold hands.
A person is NOT their Alzheimer's disease any more than a person who has cancer is their cancer!
Those of us who have had family members with dementia or other progressive diseases do understand from whence that sentiment arises. However, it is ultimately not a helpful one. Nor is it accurate. It implies that we might as well give up on a person who is still very much alive. This could not be further from the truth. A person is NOT their Alzheimer’s disease any more than a person who has cancer IS their cancer. The person, an intact spiritual being, is still there, though many of their needs have changed dramatically. We do our loved ones a disservice if we refuse to rise to the occasion of their increased needs.
Maintain connections along the way
There are many gifts to be gained by accepting where the person is at, through each and every phase of their dementia experience. There is connection to maintain all along the way. How we connect will vary with different types and different phases of dementia, but in general, smiling, eye contact, gentle touch and approach, curiosity, acceptance of where the person is, conversation about things that are meaningful to the person, sharing laughter, singing, enjoying simple pleasures, giving compliments, promoting calm, validating the person’s feelings, doing things just the way the person likes, making things easier for them, reminiscing, having fun together, sparking creativity, enjoying humor….well, the list of what can be done to maintain a healthy, nurturing relationship goes on and on.
Responding to the world from an earlier developmental time
In short, we can treat the person like a PERSON, and remember that even though this person is losing skills, even though this person may enjoy and indeed benefit from things that children like, this person is still an adult who is simply responding to the world from an earlier developmental time. This person still has strengths and skills we must actively encourage and appreciate in order for them to have a meaningful life.
Language is powerful
Did you notice that I’ve been using the term “care partner” rather than “caregiver?” Language is powerful. When the relationship between a person with dementia and someone caring for them is viewed more as a partnership, what’s implied is that both persons have something to give. Think about it…What might persons with dementia still have to offer us, their care partners?
Some bonds remain unbreakable
They can give valuable input as to what they like and what they don’t like. They can lend us wisdom from past experience; they can share memories of olden days, with humor and perspective. They can inspire us with their courage and resilience. They can give us love. In this process, we may be surprised at how flexible our own capacity to love may become. Even in the late stage of their dementia, our loved one may remind us how some bonds remain unbreakable. Caring for persons with dementia may give us more patience and more appreciation for wordless communication and for life than we’ve ever known.
We are in this together
Thinking about our relationship as a partnership will help make us more open to a person’s participation and input. We just might respect, value and love this person all the more. We are not the same as this person, and we have each been impacted by dementia and changed forever in vastly different ways, but surely we are in this together.
Aurora Senior Living is managed by Ebenezer, Minnesota’s largest senior living operator. Ebenezer is the senior housing division of Fairview Health Services and has 100 years of experience serving older adults.
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