Saturday, July 27, 2013

"Because of Love"

"Because of Love!! "this is a true story"

A brother and sister had made their usual hurried, obligatory pre- Christmas visit to the little farm where dwelt their elderly parents with their small herd of horses. The farm was where they had grown up and it had been named Lone Pine Farm because of the huge pine, which topped the hill behind the farmhouse. Through the years the tree had become a talisman to the old man and his wife, and a landmark in the countryside. The young siblings had fond memories of their childhood here, but the city hustle and bustle added more excitement to their lives, and called them away to a different life.

The old folks no longer showed the horses, for the years had taken their toll, and getting out to the barn on those frosty mornings was getting harder, but it gave them a reason to get up in the mornings and a reason to live. They sold a few foals each year, and the horses were their reason for joy in the morning and contentment at day's end.

Angry, as they prepared to leave, the young couple confronted the old folks "Why do you not at least dispose of The Old One." She is no longer of use to you. It's been years since you've had foals from her. You should cut corners and save so you can have more for yourselves. How can this old worn out horse bring you anything but expense and work? Why do you keep her anyway?"

The old man looked down at his worn boots, holes in the toes, scuffed at the barn floor and replied, " Yes, I could use a pair of new boots."

His arm slid defensively about the Old One's neck as he drew her near. With gentle caressing he rubbed her softly behind her ears. He replied quietly, "We keep her because of love. Nothing else, just love."

Baffled and impatient, the young folks wished the old man and his wife a Merry Christmas and headed back toward the city as darkness stole through the valley.

The old couple shook their heads in sorrow that it had not been a happy visit. A tear fell upon their cheeks. How is it that these young folks do not understand the peace of the love that filled their hearts?

So it was, that because of the unhappy leave-taking, no one noticed the smell of the insulation smoldering on the frayed wires in the old barn. None saw the first spark fall. None but the "Old One".

In a matter of minutes, the whole barn was ablaze and the hungry flames were licking at the loft full of hay. With a cry of horror and despair, the old man shouted to his wife to call for help as he raced to the barn to save their beloved horses. But the flames were roaring now, and the blazing heat drove him back. He sank sobbing to the ground, helpless before the fire's fury. His wife back from calling for help cradled him in her arms, clinging to each other, they wept at their loss.

By the time the fire department arrived, only smoking, glowing ruins were left, and the old man and his wife, exhausted from their grief, huddled together in front of the barn. They were speechless and stunned as they rose from the cold snow covered ground. They nodded thanks to the firemen as there was nothing anyone could do now. The old man turned to his wife, resting her white head upon his shoulder as his shaking old hands clumsily dried her tears with a frayed red bandana. Brokenly he whispered, "We have lost much, but God has spared our home on this eve of Christmas. Let us gather strength and climb the hill to the old pine where we have sought comfort in times of despair. We will look down upon our home and give thanks to God that it has been spared and pray for our beloved most precious gifts that have been taken from us.

And so, he took her by the hand and slowly helped her up the snowy hill as he brushed aside his own tears with the back of his old, withered hand.

The journey up the hill was hard for their old bodies in the steep snow. As they stepped over the little knoll at the crest of the hill, they paused to rest, looking up to the top of the hill, the old couple gasped and fell to their knees in amazement at the incredible beauty before them.

Seemingly, every glorious, brilliant star in the heavens was caught up in the glittering, snow-frosted branches of their beloved pine, and it was aglow with heavenly candles. And poised on its top- most bough, a crystal crescent moon glistened like spun glass Never had a mere mortal created a Christmas tree such as this. They were breathless as the old man held his wife tighter in his arms.

Suddenly, the old man gave a cry of wonder and incredible joy. Amazed and mystified, he took his wife by the hand and pulled her forward. There, beneath the tree, in resplendent glory, a mist hovering over and glowing in the darkness was their Christmas gift. Shadows glistening in the night light.

Bedded down around the "Old One" close to the trunk of the tree, was the entire herd, safe.

At the first hint of smoke, she had pushed the door ajar with her muzzle and had led the horses through it. Slowly and with great dignity, never looking back, she had led them up the hill, stepping cautiously through the snow. The foals were frightened and dashed about. The skittish yearlings looked back at the crackling, hungry flames, and tucked their tails under them as they licked their lips and hopped like rabbits. The mares that were in foal with a new years crop of babies, pressed uneasily against the "Old One" as she moved calmly up the hill to safety beneath the pine. And now she lay among them and gazed at the faces of the old man and his wife.

Those she loved she had not disappointed. Her body was brittle with years, tired from the climb, but the golden eyes were filled with devotion as she offered her gift ---LOVE. Because of love. Only Because of love.

Tears flowed as the old couple shouted their praise and joy... And again the peace of love filled their hearts.

This is a true story.
Willy Eagle."

Friday, July 26, 2013

"Alzheimer's disease"



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By Mayo Clinic staff

Alzheimer's Caregiving

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Alzheimer's disease is a progressive disease that destroys memory and other important mental functions.
It's the most common cause of dementia — a group of brain disorders that results in the loss of intellectual and social skills. These changes are severe enough to interfere with day-to-day life.
In Alzheimer's disease, the connections between brain cells and the brain cells themselves degenerate and die, causing a steady decline in memory and mental function.
Current Alzheimer's disease medications and management strategies may temporarily improve symptoms. This can sometimes help people with Alzheimer's disease maximize function and maintain independence.
But because there's no cure for Alzheimer's disease, it's important to seek supportive services and tap into your support network as early as possible."

"Alzheimer's blog Myths, misconceptions interfere with Alzheimer's diagnosis, care"

  • "June 26, 2012

    By Angela Lunde

20 comments posted

Alzheimer's Caregiving

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Last week, a senior living complex hosted a fair of services. In a large and beautiful common area information was available about a variety of amenities, programs, and services offered at the facility.
I noticed that while each table had a handful or more of residents chatting and inquiring with facility staff, one table drew little traffic. It displayed information for individuals and families dealing with dementia and Alzheimer's. Given that the average age in this residence was 85 that seemed odd. Or was it?
In the last blog, Dr. Smith wrote about the confusing jargon that surrounds memory loss and cognitive changes. He said that while a barrier to receiving an early and clear diagnosis can sometimes rest with the doctor or healthcare provider, it may also be fear on the part of some families to hear the "A" word. There's an Alzheimer's stigma.
The stigma is associated often with suffering, loss of mind, loss of independence and disability. The fear of this stigmatization may delay patients and their families from seeking a medical diagnosis — even as the symptoms become blatantly obvious. The word Alzheimer's can stir up such intense fear that it can inhibit any discussions of it with friends and even some family members.
With such a stigma, why diagnose?  We all know that you can't make your loved one well once you have named the diagnosis. So here's my point: early diagnosis offers persons with the disease and their caregivers and families a chance at a better quality of life. If stigma makes a person with memory concerns resist seeing a doctor, then they're losing out on the benefits offered by timely treatments, therapies, and programs.
If stigma prevents caregivers from seeking support from family and friends, as well as formal services, then ultimately there can be additional negative outcomes for these caregivers — increased burden, stress, depression and physical illness. Research shows that without supportive services and programs for caregivers, premature nursing home placement for their relative with dementia increases.
As long as there is a stigma associated with Alzheimer's, people with the disease and their families will be far less likely to open up and seek help and support. Below are just a few of the most common and yet I feel detrimental myths and misconceptions about Alzheimer's still out there today:
  • Myth: Dementia and Alzheimer's is just normal aging. Stating that Alzheimer's is not a disease and that dementia is due to normal aging is irresponsible. There's no cure or prevention, but that doesn't mean we shouldn't diagnose and treat the symptoms, take full advantage of therapies and supportive services, and plan responsibly for the future. Not recognizing Alzheimer's as a disease keeps people feeling even more shame and isolation.
  • Misconception: People with Alzheimer's become agitated, violent and aggressive. No, not all people with Alzheimer's are agitated, violent or aggressive. The disease affects each person differently. Most often symptoms such as these are a result of the increased confusion and fear due to changes in the brain, as well as frustration from a decline in the person's ability to process information and communicate their needs verbally. By understanding the disease, caregivers and families can adapt their approach and methods of communication and prevent most negative behavior.
  • Misconception: People with Alzheimer's can't function, can't have a quality of life, and can't enjoy activities. Not true! People with the disease can live meaningful, active lives. They can achieve a renewed sense of purpose. Earlier diagnosis and medications are helping with this. People with early stage Alzheimer's want to get the message out that they're living with Alzheimer's, not dying from it. In the later stages of the disease, those with Alzheimer's who are treated as whole human beings in positive environments can still give and receive great love, participate in activities and share moments of joy and laughter.
As long as these and many other myths and misconceptions about Alzheimer's continue, Alzheimer's will carry a stigma. This means that many of those impacted will tend to hide and withdraw in shame, fear, and embarrassment. Somehow, some way, we need to break down the stereotypes and stigma.
Once we wholly understand and believe that individuals with the disease can maintain quality in their life well into the disease, and once we are open and honest about the disease itself, we can begin to change perceptions.
We could become a dementia compassionate community and society, taking dignified care of people with Alzheimer's (and related dementia) while embracing and accepting their families and caregivers.
There is a wonderful document called The Alzheimer's Disease Bill of Rights. It was drafted by Best Friends developers Virginia Bell and David Troxel. This bill of rights beautifully articulates the core principles every person diagnosed with Alzheimer's or a related disorder deserves:
  • To be informed of one's diagnosis
  • To have appropriate, ongoing medical care
  • To be productive in work and play for as long as possible
  • To be treated like an adult, not like a child
  • To have expressed feelings taken seriously
  • To be free from psychotropic medications, if possible
  • To live in a safe, structured, and predictable environment
  • To enjoy meaningful activities that fill each day
  • To be outdoors on a regular basis
  • To have physical contact, including hugging, caressing, and hand-holding
  • To be with individuals who know one's life story, including cultural and religious traditions
  • To be cared for by individuals who are well
Virginia Bell and David Troxel's book is one I highly recommend. It is called "A Dignified Life: The Best Friends Approach to Alzheimer's Care — A Guide for Family Caregivers." The book offers ways to bring dignity to the lives of both those who have Alzheimer's and those who care for them."

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"Alzheimer's blog Life's best lessons often emerge during caregiving role"

  • "May 15, 2012

    By Angela Lunde

35 comments posted

Alzheimer's Caregiving

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I'm writing on Mother's Day so it seems only natural that I'm thinking about my own mother. I feel tremendous gratitude that my mother, who lives only a few miles from me, doesn't have Alzheimer's or a related dementia. In fact, other than the normal age related issues that she brings up from time to time, she's both beautiful and healthy.
Many of you may not be so fortunate, as your mother may have Alzheimer's. The relationship between an adult child and their mother with Alzheimer's is unique in each family. But always, the experience of caregiving is relational. It can't be separated from people's understanding of each other in the past, present, or even the anticipated future. The personal journey of each son or daughter in a caregiving role is rooted in past relationships.
The mother-daughter bond (for better or worse) is central to the lives of women. For most of us, our mother knows us in ways no one else does, or even can. Only our mother fully knows the events surrounding our birth, only she may hold certain details of our childhood, our awkward quirks, most embarrassing moments and the pivotal milestones in our life. For some of us, it's our mother we look to, to share our joys, and who we turn to when we need to be comforted. So, when a daughter has a mother with Alzheimer's, the grief can be immeasurable.
Leeza Gibbons tells of the first time her mother with Alzheimer's no longer recognized her:
"I remember being home in my mother's house in South Carolina, helping her make the bed, and she was watching my every movement closely and trying to mirror what I was doing. Then she stopped and looked at me, and I said, "What's the matter, Mom?" She said, "You're a very nice lady. How do I know you?" And I just smiled and said, "You know me because today I'm your daughter, yesterday I was your daughter, and I'll always be your daughter." And she said, "Oh." "It stabs your heart," Leeza said.
In my discussions with daughters who are caring for a mother (or father) with Alzheimer's, there are always those that inspire me with their grace. These women speak about the incredible sadness of not only losing a part of their mother, but feel like they're losing a part of themselves as well. Yet, in spite of this, I hear often from women about the unexpected gifts and the life lessons that prevail even in the darkest stretches of caregiving.
Many share how their mothers with Alzheimer's teach them about living in the moment — existing outside of memory and occupying the moment wholly. These daughters have learned how to find a sense of contentment and love in the face of a bad situation — mostly by simply choosing to. They reveal that their mother's Alzheimer's teaches them that unleashing the joy in caregiving, and moreover in life, has to do with adjusting priorities, learning to value little steps, letting go of old ideas and expectations, seeing the delight in ordinary things and accepting life as it unfolds.
Life lessons from Mom needn't end when Alzheimer's begins. In fact, the greatest may be yet to come.
"How important it is for us to recognize and celebrate our heroes and she-roes!"
- Maya Angelou"

"Alzheimer's blog Unmet needs and negative behaviors: Part 2"

  • "July 24, 2012

    Angela Lunde

51 comments posted

Alzheimer's Caregiving

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Last week I attended the Alzheimer's Association International Conference in Vancouver, British Columbia, Canada. A focus of this year's conference was social, behavioral and care research in Alzheimer's. It was wonderful to see attention and emerging research in this area. It also validates our recent discussions about effective strategies in easing behavioral disturbances in people with dementia.
As highlighted in my last blog, it is important to see challenging behaviors as symptoms instead of problems. Think about this analogy: You have an infection and develop fever. The fever is a symptom of the infection. If we simply see your fever as the problem, we will only treat the fever. While this might reduce some of your discomfort for a time, the fever will eventually return and you will get worse because nothing was done for the real problem — the infection. Similarly, to better manage behavior symptoms in a person with dementia, we need to uncover and address the real source of the problem.
I am sure as a caregiver this can seem like one more role to take on — that of a detective assigned to uncover the real problem. Yet the goal here is not to add more burden or pressure to the caregivers. If caregivers can identify triggers, learn some techniques and skills, and are willing to employ them, the result will be fewer unmet needs and consequently fewer behaviors that challenge and wear down caregivers. In this regard, the quality of life for the caregiver can improve.
Just what potentially are these unmet needs, the real problems? Unmet needs generally fall into one of three broad areas:
  • Personal health
  • Physical environment
  • Social environment
In other words, behaviors can be an expression of a health need or an outcome of the interaction between the person with dementia and their physical or social environment.
Let's start with physical health. Persons with dementia are often limited in their ability to identify, understand or articulate when they are in pain, feel uncomfortable, are sad or are disorientated due to physical limitations. The following represent some common health issues that are often overlooked in people with dementia as potential problems leading to behavior symptoms:
  • Fatigue due to poor sleep
  • Presence of a medical condition such as an infection (for example, urinary tract infection)
  • Clinical depression
  • Vision loss or lack of proper eyeglasses
  • Hearing loss or lack of working hearing aid (check batteries)
  • Constipation
  • Dehydration
  • Need to urinate
  • Hunger
It is important to always consider these and other health conditions that may be contributors to the behavior symptoms. It would make sense that if a person is fatigued, hungry or in pain, and is unable to articulate or take care of the need independently, that they would express anger, agitation or even aggression.
Behavior symptoms also can be related to the physical environment. We now understand how powerful environmental factors are in triggering behavioral symptoms. Individuals with dementia experience increasing vulnerability and a lower tolerance to stress in their environments. I like to think of the environmental contributors to stress in persons with dementia in three areas: physical space, daily routine and structure, and sensory stimulation.
The good news is that we, as caregivers, can use the environment to our advantage because we can control and modify the environment. This means that we can play a significant role in reducing environment-related stress. We can often prevent problems, and therefore behaviors, by creating a supportive environment. In addition, we can sometimes manage a behavior (unmet need) by altering the environment in some way.
As we think about how someone with dementia interprets and perceives their environment, we can make some basic modifications to help that person feel less confused and more in control.
Strategies such as placing a clock and calendar in plain sight, reducing clutter, and keeping household objects and furniture in the same places will reduce confusion and maintain a feeling of control. Displaying familiar objects and photographs will offer a sense of security. Labeling spaces with signs, pictures or colored arrows will help people with dementia find their way around the house.
Ambiance, sound and light can all play a role in whether a person with dementia experiences a sense of calm or stress. Well lit spaces without confusing glares or shadows, low noise levels and generally quiet surroundings can reduce confusion and stress for a person with dementia.
Some levels of activity can be over-stimulating for person with dementia and a potential trigger for irritability. On the other hand, a person with dementia may be irritable because they are bored or lonely, and lack sensory stimulation. An environment that appropriately stimulates the senses, including sight, sound, taste and smell, offers a unique opportunity to ensure the overall well-being of the person with dementia (thus decrease behavior symptoms).
The use of aromatherapy is a growing field of complementary therapy. Essential oils used in aromatherapy have been found to be safe and have shown some positive results for promoting a sense of calm and even reducing agitation.
Music has a way of having a positive impact on people with dementia. Certain types of music calm and relieve tension and anxiety, while other types of music can be uplifting and improve mood.
People with dementia benefit from routine and consistency. Keeping regular times for activities, such as waking up, mealtimes, bathing, dressing, exercising and bedtime. can help orientate the person and offer a sense of security. Similarly, offering cues to distinguish the different times of day can be done by opening the curtains in the morning to let the light in. An evening ritual like playing meditative music or the use of aromatic oils may help to signal the end of the day.
Sometimes, we simply cannot prevent a behavior but we can accommodate it instead. For example, wandering or pacing is common in persons with dementia and can be a symptom with many causes. Caregivers can accommodate this by creating a safe physical space where the loved one can pace or wander with minimal risk.
Dementia is clearly a condition where a person's ability to maintain his or her own well-being is compromised. This results in expressions of distress. I have provided some examples of the contributing factors that can lead to distress for people with dementia.
However, I have not yet talked about one of the most powerful and immediately effective approaches to minimizing stress in persons with dementia — adapting an effective communication style (part of social environment). Stay tuned."

51 comments posted

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"Alzheimer's blog Negative behaviors may signal unmet needs: Part 1"

  • "July 10, 2012

    Angela Lunde

59 comments posted

Alzheimer's Caregiving

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Linnie wrote recently about the meaningful life she shares with her husband even though the past nine years have included living with Alzheimer's disease. Linnie is the primary caregiver for her husband and she is fortunate to employ the help of others as well.
Although I don't know Linnie personally, I am quite sure she is a loving wife and remarkable caregiver. She wrote that she's: " ...always aiming to be loving and respectful, even in times when his behavior threatens to send me over the edge."
I think all caregivers understand what Linnie means when she mentions "his behavior." In caring for a person with dementia, the term "behaviors" is often used to imply some negative distress exhibited and observed in the person with dementia. It can include agitation, paranoia, resistance, or even yelling and hitting.
For a long time I have said to caregivers "Blame the disease, not the person." It's a way to help caregivers separate the person with Alzheimer's from some undesirable behavior, and to appreciate that the person with dementia is not intentionally acting bad or trying to upset, frustrate or annoy caregivers. I still maintain this notion, and certainly we should not blame the person for their disease. Yet, I want to be cautious that we do not simply dismiss or blame the behaviors on the dementia. To do so can have tremendous consequences on the overall well-being of the person with dementia, as well as to you, the caregiver.
It makes sense that behaviors such as agitation, yelling, hitting or uncooperativeness are part of a brain dysfunction linked to dementia, but here's what I want to make clearer — dementia itself does not create these behaviors. The environment, physical discomfort (pain for example), our approach and communication style are just a few things that can have a person with dementia behaving in a particular way.
A colleague of mine recently described dementia as a type of disability where one's experience of the world is shifting over time, and that the distress or behaviors exhibited by a person with dementia are purely an expression of need. I think most of us probably believe that much of human behavior is motivated by specific needs that have to be met. Abraham Maslow, a psychologist, talks about basic human needs — food, warmth, sleep, safety and security, as well as higher order needs such as the need for affection, belonging, love and self-esteem.
A person with dementia has both basic and higher order needs, including those for social contact, physical touch, praise, and a sense of belonging, purpose and control. Yet for people with dementia, their ability to satisfy these needs on their own diminishes over time and can go unrecognized. And as persons with dementia lose their ability to communicate their needs effectively though words and language, overt behaviors fill the void. In other words, behavior is communication.
Caregivers as well as doctors and other professionals tend to label behaviors with words such as difficult, disruptive or, worse yet, will label a person with dementia as combative, resistive or challenging. Yet behaviors are simply communication tools when language and other means of coping are no longer available. I believe one of the best things we can do for a person with dementia is to shift our way of thinking and view behaviors as neither good nor bad, but as a bold sign that there is an unmet need that requires attention.
If you accept what I am saying, then we as caregivers (family, friends) can play an enormous role in easing (and preventing) distress for the person with dementia and ultimately ourselves. Teepa Snow, an extraordinary dementia education and care specialist said recently, "If we can help care partners see the 'behaviors' as the tip of the iceberg and as something to be curious about, to investigate and to explore, rather than to judge, then we can change the entire paradigm."
As a family or professional caregiver how do you begin to investigate, explore and figure out the unmet need? Family caregivers may have an upper hand here because they understand better than anyone the personality traits, life history and personal preferences of the person with dementia. This understanding offers important clues. Yet family members can also struggle the most because this shift requires letting go of the person as they once were, altering expectations and changing well established patterns of communication.
In my next post, I am going to offer more insights as well as specific techniques and strategies for uncovering the message (unmet need) behind the behavior.
Until then, I think Linnie has some excellent advice, "While living with Alzheimer's disease is no picnic, I believe Alzheimer's disease is manageable if one can hang onto an attitude of gratitude, laughter and love."

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"Alzheimer's blog Caregivers have a great gift to share with each other — their stories"

  • "Dec. 11, 2012

    By Angela Lunde

25 comments posted

Alzheimer's Caregiving

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A few weeks ago Ella, a wife and caregiver, wrote about her possible departure from her support group community. She shared that the support group includes many new members who often come with feelings of grief and anger, as well as experienced participants who continue to attend even after the death of their loved one. Ella wrote that lingering disbelief and years of loneliness dwell with many in her support group family.
Ella, 80 and still caring for her husband, went on to say that after many years of attending the support group, she feels she doesn't have much to offer anymore. She said perhaps she should move on. While that's understandable (everything has a time and a place), I wonder if Ella recognizes the gift she has given and keeps on giving.
Ella teaches others about stretching beyond the grief and anger by reaching out to those who share a common path. I know how difficult it can be for caregivers to feel that they have the energy to open up to others. Ella may have felt that same reluctance in the early years. And yet, she's an example that on the other side of isolation sits connectedness, offering a way to greater resilience and ease.
Ella teaches others that the most difficult times eventually pass and that patience, love and peaceful days can find their return. And perhaps what I love the most, Ella is an example of living through life's heartache with dignity and grace.
Her gift is her willingness to be vulnerable and to share her story, her beautifully imperfect life — a life that offers lessons in resilience, dignity and hope. And when she shares with others (and us) in her support group, the notion that she is disconnected dissolves. Perhaps this is the gift Ella receives in return.
Without a way to share our stories and our struggles, we are left feeling lonely, indifferent and out of touch with our life's meaning and purpose. We can end up feeling unworthy, unloved and even sick. Sharing and telling our stories with others who will listen and who really care may be the most powerful medicine on earth.
I encourage you all to find ways to connect and share your story — this will be a lasting gift to you. Listen with empathy to others who share their story — this is the gift you give to one another. Know that you are not alone. In Ella's words, "it will be all right."
I wish you joy and ease this holiday season.

"Alzheimer's disease: Anticipating end-of-life needs"

"As an Alzheimer's caregiver, you may be your loved one's most powerful voice. Make decisions for your loved one that ensure respect, dignity and comfort until the end of life.

By Mayo Clinic staff
In the early stages of Alzheimer's disease, you may focus on keeping your loved one safe and comfortable. As the disease progresses, however, you may face difficult end-of-life questions. When is it time to choose comfort care over lifesaving care? When does medical care merely prolong a person's dying? Here's help considering these and other end-of-life questions.

Create advance directives

Advance directives are written instructions regarding your loved one's preferences for medical care at the end of life. Ideally, discuss these preferences with your loved one while he or she is still able to communicate personal wishes. Later, make sure copies of advance directives are included in your loved one's medical charts. This is especially important if your loved one moves to a nursing home or other facility for long term care. The advance directives will help the staff know what is — and isn't — to be done in medical emergencies.

Focus on comfort, not life extension

As Alzheimer's progresses, your loved one may not be able to communicate the fact that he or she is in pain. Look for other clues, such as a sudden increase in disruptive behavior or trouble sleeping. Physical signs may include sores, swelling, and warm or pale skin. Then speak to the medical team about adjusting your loved one's treatment plan to ensure his or her comfort.
Eventually, you may need to weigh your loved one's comfort against the benefits of prolonged life. In some cases, efforts to prolong life — such as dialysis, tube feeding and antibiotics to treat bacterial infections — may result in unnecessary suffering for people who could otherwise reach the end of life in relative comfort and peace.

Consider hospice or palliative care

Hospice care focuses on pain management and comfort care at the end of life. Hospice care is typically reserved for people who have fewer than six months to live. Because this time frame can be difficult to predict in end-stage Alzheimer's, hospice care is generally considered appropriate when a person who has end-stage Alzheimer's:
  • Has lost the ability to communicate in any meaningful way
  • Can no longer walk without assistance
  • Has at least one dementia-related medical complication, such as aspiration pneumonia, urinary tract infection, infection or weight loss
Hospice care can be provided anywhere, including a nursing home. If your loved one lives longer than six months after starting hospice care, the benefit can be extended. Likewise, you can choose to stop hospice care at any time.
Palliative care — which aims to improve quality of life for people who have advanced illnesses — also may be appropriate. Unlike hospice care, palliative care is available at any time during a serious or life-threatening illness. It's offered in conjunction with other medical treatment and is meant to help ease symptoms, relieve pain, address spiritual and psychological concerns, and maintain dignity and comfort.

Connect through the senses

Even if your loved one doesn't recognize you or can't communicate verbally, you can still show reassurance and love. To maintain a connection, use your loved one's senses:
  • Touch. Hold your loved one's hand. Brush his or her hair. Gently massage your loved one's hands, legs or feet.
  • Smell. The scent of a favorite perfume, flower or food may be comforting.
  • Sight. Show your loved one a video with scenes of nature and soft, calming sounds. If your loved one lives in a facility with a bird cage, take him or her to watch the birds.
  • Hearing. Read aloud, even if your loved one can't understand the words. The tone and rhythm of your voice may be soothing.

Dying with dignity

Helping someone who has Alzheimer's through the last years of life is a difficult journey. As the disease progresses, you'll make more decisions for your loved one. Among the most profound are decisions that ensure respect, dignity and physical comfort until the end of life."

"Home safety tips: Preparing for Alzheimer's caregiving"

"Caring for a loved one who has Alzheimer's can be rewarding — and stressful. Follow these home safety tips to help keep your loved one out of harm's way.

By Mayo Clinic staff
Home safety is important for everyone — but it carries added significance for caregivers. This is especially true if you're caring for a loved one who has Alzheimer's disease in your home. A throw rug or a stray toy on the steps could easily put your loved one at risk of a fall or injury. To prevent stressful and dangerous situations, consider these home safety tips for caregivers.

Evaluating home safety

Start by thinking about your loved one's behavior, abilities and health. Can your loved one safely walk up and down stairs? Does he or she tend to wander or get up at night? Has he or she fallen before? Then check each room for potential hazards and make a note of any changes you'd like to make. Keep in mind that changing the environment will likely be more effective than trying to change your loved one's behavior.

Kitchen safety tips

In the kitchen:
  • Lock up breakable or potentially dangerous supplies. Install childproof latches on cabinets and drawers to limit access to items such as cleaning products, alcohol, matches, knives and scissors.
  • Prevent access to potentially dangerous appliances. Install safety knobs on the stove to prevent your loved one from turning the stove on or off. Disconnect the garbage disposal.
  • Remove artificial fruits or vegetables or food-shaped magnets.These objects might appear to be edible.

Bedroom safety tips

In the bedroom:
  • Install a monitoring device. A baby monitor will help you hear if your loved one falls or needs help. This might be particularly helpful if your loved one has advanced dementia.
  • Take caution when using heating devices. Don't use portable space heaters in your loved one's bedroom. If your loved one uses an electric blanket or heating pad, keep the controls out of his or her reach.
If your loved one tends to get up at night to drink, eat or use the bathroom, try to meet these needs before he or she goes to bed.

Living room safety tips

In the main living areas:
  • Avoid clutter. Recycle newspapers and magazines. Keep areas where people walk free of furniture. Keep plastic bags out of reach. Limit knickknacks and other decorative objects. Trim large plants, and remove any plants that might be toxic if eaten.
  • Mark glass doors, windows and furniture. Place a decal on glass at your loved one's eye level, if possible, to help him or her see glass panes.
  • Take caution when using fireplaces. Don't leave your loved one alone with an open fire in the fireplace.

Bathroom safety tips

In the bathroom:
  • Address slippery surfaces. Place nonskid strips or a mat in the bath tub and shower. Unless the bathroom is carpeted, place nonskid strips on the floor near the bath tub, shower, toilet and sink, too.
  • Install grab bars. Place grab bars near the toilet and in the bath tub and shower.
  • Use a faucet cover in the bath tub. A foam rubber faucet cover can help prevent serious injury if your loved one falls in the bath tub.
  • Install a hand-held shower head. A plastic shower stool also can help make bathing easier.
  • Lock up potentially hazardous products or electrical appliances.Install childproof latches on bathroom cabinets and drawers to limit access to cleaning products or other potentially dangerous items. Use child-restraint caps on medication containers.
  • Reduce water temperature. Set the thermostat on your hot water heater to below 120 F (48.9 C).
  • Remove door locks. Consider removing locks from the bathroom doors to prevent your loved one from accidentally locking himself or herself in.

Laundry room safety tips

In the laundry room:
  • Lock up potentially hazardous products. Install childproof latches on cabinets where you keep detergent and other potentially hazardous supplies.
  • Prevent access to the washer and dryer. Close and latch the doors and lids to the washer and dryer. Consider removing large knobs if your loved one tries to tamper with the machinery.
If the laundry room has a door, consider keeping it locked.

Garage, shed and basement safety tips

In the garage, shed and basement:
  • Lock up potentially dangerous items. Install childproof latches or locks on cabinets where you keep tools, tackle, machines, sporting equipment, paint, fertilizer, gas, cleaning supplies or other toxic materials. Remove all guns or weapons from your home.
  • Lock all vehicles. Consider covering or removing vehicles and bikes that aren't frequently used if your loved one has advanced dementia.
Consider locking the doors to these areas as well.

Outdoor safety tips

To ensure safety outdoors:
  • Check exits. If your loved one uses a walker or wheelchair, make sure he or she will be able to get in and out of your home — when necessary. Consider widening doorways or adding ramps.
  • Keep steps safe. Mark the edges of steps with bright tape. Keep steps sturdy and textured to prevent falls in wet or icy weather. As an alternative to steps, consider installing a ramp to your home's entrance.
  • Restrict access to the pool. If you have a swimming pool or hot tub, surround it with a fence. Install a gate with a lock. Cover the pool or hot tub when it's not in use.
  • Avoid clutter. Keep hoses, foliage and other debris off the walkways.
  • Safely store fuel sources. Remove fuel sources for your grill or other equipment when not in use.

Other safety precautions

In addition, consider taking these safety precautions throughout your home:
  • Prepare for emergencies. Display emergency numbers and your home address near all telephones.
  • Adjust the home phone and voice mail settings. Lower the ringer volume of your home phone to prevent distraction and confusion. Set the answering machine or voice mail to turn on after the lowest number of rings. A person who has Alzheimer's might be unable to take messages or could become the victim of telephone exploitation.
  • Use night lights. Place night lights in strategic locations — such as your loved one's bedroom and the bathroom — to help prevent your loved one from tripping if he or she gets up at night.
  • Keep stairs safe. Install light switches at the top and bottom of stairs. Make sure stairs have at least one handrail that extends beyond the first and last steps. Cover stairs in carpet or apply nonskid strips. If your loved one has balance problems, consider installing safety gates in front of stairs.
  • Install smoke alarms and carbon monoxide detectors. Place them in or near the kitchen and all sleeping areas. Check them regularly to make sure they work. If your loved one has vision or hearing problems, consider installing a smoke alarm with a vibrating pad or flashing light.
  • Check the locks. Make sure there are working locks on all windows and front and back doors. Keep a spare set of house keys outside of the house, in case your loved one locks you out.
  • Address outlets and electrical cords. Place lamps close to electrical outlets. Cover unused electrical outlets with childproof plugs.
  • Treat slippery or uneven surfaces. Remove scatter rugs. Place nonskid strips or wax on hardwood and tile floors.
  • Keep computer equipment out of the way. If you store valuable documents on your computer, protect the files with passwords and create backup files. Consider monitoring your loved one's computer use.
You can buy many products or gadgets necessary for home safety in hardware, electronics, medical supply and children's stores. If you need help making changes to your home, enlist friends, a home safety professional or a community organization.
Remember, paying attention to home safety can help your loved one maintain his or her independence — and ease the stress of caregiving."