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Caregiving and the holidays: from stress to success!

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While everyone else is enjoying the hustle and bustle and the joy of the holiday season, there are many caregivers out there who just want the whole thing over with. Care-giving creates a level of stress unmatched by most endeavors. Add to that the extra stress of family gatherings, gift buying, cooking, and other obligations and it is almost unbearable. How can caregivers better cope with this stress on top of stress?

As a caregiver for a loved one with dementia, it is important to try to maintain a sense of familiarity for the one we are caring for. Confusion and unfamiliar changes can be challenging to anyone so imagine then how too much change can affect one with memory problems.

The key is to pace yourself, as well as to help your loved one do the same, so that neither of you will feel completely drained, depressed or overwhelmed, especially during such a special time of year.

During the holidays it is important for caregivers to seek a balance, between caring for someone else and caring for oneself; between celebrating good memories of past holidays while not dwelling on what might have been lost.

Here are some tools to decrease stress and enjoy the season as a caregiver.

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Gradually introduce decorations, lights, music etc:  Cairn Park’s Stu Gaines designed and implemented a study in the early 1990’s in conjunction with university of Wisconsin.  The published study demonstrated that by introducing decorations slowly over a 2 – 3 week period, into a home or facility, there were little or no behavioral changes with the residents.  However instantaneous changes elicited a dramatic spike in the number and severity of challenging behaviors in people with dementia.  The same applies to the end of the holidays, slowly remove the decorations etc. over a period of a few weeks.

Another good idea is to try to maintain the same furniture floor pattern. For someone who may be a little confused at times, moving the furniture around may totally throw them off and lead to more confusion and agitation.

Simplify:  With the large number of extra tasks involved in your traditional holiday it may make sense to simplify by reducing or eliminating some of your usual rituals, recipes, events etc.

Ask yourself the following questions:

Would the holidays be the same without it?

Do I do it out of habit, tradition, free choice, or obligation?

Is it a one person job, or can I ask someone to share it?

Can someone else do it?

Do I like doing it?

As much as possible keep your loved one on their regular routine: Try to schedule the major activities for the day early in the day. We know that as the day wears on we all tend to become tired under normal conditions. For someone who is struggling to find their place in an already confusing world, the stress and agitation increases as the day goes on. Saving a time of sitting and quietly visiting towards the end of the day would benefit all concerned. Talking of past holiday customs and recipes may be enjoyable for your loved one, if they have long term memory recall.

If your loved one becomes agitated, try to remove them to a quiet area of the house either with yourself or someone they trust.

Prior to the onset of any behavioral problems during a holiday gathering, prepare distractions such as a family album to draw the person’s attention away from their problem.

Include your loved one in some holiday preparations:  Focus on their remaining strengths, and let them use their own capabilities to help with small tasks. It makes them feel that they are being useful while at the same time helps to occupy them so you are also able to get on with other preparations. Have them do a repetitive task, such as folding napkins, peeling potatoes, mixing cake batter that will help keep them calm.

Try not to schedule too many social events, one right after another:  It’s better to miss out on a few holiday events than to end up with yourself or a loved getting too exhausted, and don’t feel guilty about telling someone “no” when asked to participate in yet another holiday function.

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If possible limit the number of guests so that the amount of confusion is lessened. Keep the numbers small, for example 10 or 12 persons in a home can cause agitation and anxiety.  Keep in mind that the more noise that is present; the more confusion will be evident. Large crowds will be a problem

Make guests aware ahead of time of the emotional state of the one you are caring for. You could even send them material to read giving them an overview of the disease if they are unaware of what it entails. This would also be an excellent opportunity to prepare friends and family for the changes they might see in your loved one, especially if they have not been to visit in some time.

With guests in and out of the house, be sure that someone is aware at all times of where your loved one with dementia is. If they tend to wander there is a chance that they may wander off while everyone thinks that everyone else is watching.

Ask guests to bring a dish.  A potluck is a great idea; you can even assign specific dishes to ensure that a complete dinner is provided.

Self-Care

Try to keep up on your regular exercise routine, or start one, during the holidays. Walking five times a week is a great way to stay in shape. There is also something about pounding the pavement that helps release frustrations and clears your head.

Do some laughing.  There is nothing that cuts through stress more than humor.  Rent a good comedy, have family and friends reminisce over humorous events over the years.

Don’t be afraid to ask for help, and to delegate holiday tasks among family and friends. Be careful about spreading yourself too thin by volunteering to help others. It’s okay to say no, and when you do, make it short and simple, and don’t apologize;

Finally, be sure to fit some time in for yourself this holiday season. If you have the extra people there, then use them to your advantage. Take a few minutes sometime during the day to pamper yourself! Remember this is your holiday too, and do not be afraid to let family know that a little quiet time for yourself could be a gift beyond measure.

 

By |December 1st, 2016|View All|Comments Off on Caregiving and the holidays: from stress to success!

Early-onset Dementia – Not All Who Wander are Lost !

Early-onset Alzheimer’s disease, also known as younger-onset affects people younger than 65, many people with this diagnosis are in their 40’s and 50’s, they have families and careers when Alzheimer’s disease strikes. In the United State it is estimated that approximately 200,000 people have early onset Alzheimer’s.

Getting a diagnosis for this dementia presents serious problems for people under 65.  Health care providers generally don’t look for the disease in younger patients and it is not uncommon for doctors to say that the symptoms may be related to stress menopause or depression.  It can therefore be months or years before the right diagnosis is made and proper treatment can begin.

Although Early-onset Alzheimer’s disease (EOD) currently has no cure doctors have had some success in helping people maintain function, control behavior and slow the progression of the disease, in addition researchers are learning new things about Alzheimer’s disease every day.

The medical community does not know the exact cause of the disease but researchers do know genetics play a role in Alzheimer’s. There are risk genes, which increase the likelihood of developing a disease, but do not guarantee it will happen. And there are deterministic genes that directly cause a disease, guaranteeing that anyone who inherits them will develop the disorder.

After a younger-onset diagnosis, individuals can often live meaningful and productive lives and still have much to contribute to the world.

Impact on the family

Family dynamics will almost surely change.  In the role of parenting talking about an Alzheimer’s diagnosis is often difficult and decisions need to be made regarding timing especially when younger children are concerned, often the child is too young to understand.

It is normal that the whole family will experience grief and usually counseling is a good idea.

Having a diagnosis makes it possible for the person in the early stage of EOD to have the opportunity and time to put critical financial and legal plans in place.  To talk to family members and to gain confidence about decisions family members may need to make on their behalf when it becomes too demanding or unsafe for them to make decisions.

Receiving a diagnosis while working

For the person with EOD it is critical to be educated about the benefits that may be available through their employer and through this knowledge be able to maximize these benefits before needing to leave the job

Benefits offered by an employer may include

 

Disability insurance
Disability insurance provides income for a worker who can no longer work due to illness or injury. The insurance plan must be in place before symptoms of Alzheimer’s disease appear. With an employer sponsored disability policy, a percentage of salary may be provided. Benefits paid out of an employer plan may be taxed as income

COBRA 
COBRA is a federal law that allows individuals to continue their health care coverage after leaving a job. COBRA refers to the Consolidated Omnibus Budget Reconciliation Act of 1985 and is available to those who work in companies with 20 or more.

Receiving a diagnosis after leaving a job

Lack of health insurance for those with EOD and their families and high out-of pocket expenses for medical care can put a significant strain on the financial situation and the ability to get the appropriate medical care needed.  There are though some programs that at least may help somewhat with finances.

Medicare is a federal health insurance program generally for people aged 65 or older who are receiving Social Security retirement benefits, but does offer benefits for individuals who are younger than 65 and have received Social Security disability benefits for at least 24 months.
Pre-existing Condition Insurance Plans were established under the Affordable Care Act. The federal government will provide premium subsidies to low and moderate income individuals to help them purchase health insurance, and will offer subsidies to businesses that provide health insurance coverage to retirees aged 55 to 64.
Retirement benefits 
It may be possible to tap into financial resources from retirement plans, even if the person with EOD has not yet reached retirement age. Retirement plans include Individual Retirement Accounts (IRAs) and annuities. Pension plans will typically pay benefits before retirement age to a worker defined as disabled under the plan’s guidelines. It may also be possible to withdraw money from an IRA or employee-funded retirement plan before age 59 1/2 without paying the typical 10 percent early withdrawal penalty.

 

Although a devastating diagnosis it is possible to live well with Alzheimer’s by taking control of health and wellness, and focusing energy on the aspects of life that the person with EOD finds most meaningful.

In an NPR special Alzheimer’s Association Early Stage Advisor Greg O’Brien offers a glimpse of what it’s like to live with EOD. Greg a journalist and writer was diagnosed with disease 6 years ago.

You can access this series through this link

NPR Early-onset dementia series

By |May 31st, 2016|View All|Comments Off on Early-onset Dementia – Not All Who Wander are Lost !

Not Your Grandparent’s Nursing Home!

Not your grandparent’s nursing home.

The Green House Project is getting a lot of attention recently on PBS/NPR and the New York Times.  The concept is isn’t new but compared to traditional nursing homes the concepts are radical.  The idea behind the Green House project is to create a small home environment for 10 persons in need of long-term care services. This model of care was originally pioneered by the founders of Cairn Park and refined by them the over the years.

Cairn Park emphasis is on serving 5 or 6 persons with Alzheimer’s or a related dementia with dignity and meeting each person’s unique situation with comfort and social engagement.  Cairn Park homes are located in single family residential neighborhoods.

Cairn Park owners embraced this small home model long before the Green House Project:

Back in 1988, Carin Park’s Stu Gaines introduced a visionary model for serving persons with dementia in ranch homes.  The original home developed by Stu was located in Monona, Wisconsin, and served eight dementia residents. This was a far cry from the large 100 bed institutional nursing homes which housed persons with dementia. While Stu’s home was radically different so was the care provided. The emphasis was on meeting  resident’s by identify resident remaining abilities and not their deficient while  allowing residents to stay involved in their own care and life.  The goal was to maintain resident dignity, function and comfort. The daily activities of the home such as meal preparation, cleaning, activities and resident care were handled by “house mothers”. Since 1988, the terms have changed.  “House mother” evolved into the term “universal worker” and an emphasis of identifying remaining abilities is reflected in the current term person-centered-care.  

The other owners of Cairn Park, Bernie Marinelli, Jason Gowin and Theresa Gowin, refined many of the concepts Stu originally introduced many years ago. Stu was the consultant to this group.  Illinois became the hotbed of long-term care innovation. Bernie founded Anam Care which serves Northern Illinois and the Gowins founded Gowin Parc which serviced downstate Illinois.  Each organization embraced the small model but more importantly, each developed new approaches to maximize the resident’s quality of life through the arts, social engagement, and clear understanding of how a specific dementia types affects the resident and their care. Collectively Stu, Bernie, Theresa and Jason have introduced more than 75 homes to various communities around the nation.  Their collective leadership, passion, and understanding of dementia and the needs of residents and their families lead to the development of Cairn Park.

The Green House Concept:

The Green House Project was developed by Steve McAlilly, CEO of Mississippi Methodist Senior Services and geriatrician William H. Thomas, M.D., in 2003.  In the early 1990’s, Thomas founded the Eden Alternative, now a global nonprofit organization that aims to deinstitutionalize long term care facilities by changing the culture of the typical nursing home. Thomas later created The Green House Project with the goal of replacing the institutional nursing home model with small communities where management and staff focused on the resident’s needs, allowing the resident to live a fuller and more vibrant life.

Cairn Park with just five or six residents per home is very similar in concept to the more publicized Green House projects. Both types of homes are designed to provide privacy, autonomy, support, enjoyment, and a place to call home. Both are radical departures from the traditional nursing home, and both reflect a major change in the culture of long-term care. The following pictures are of Cairn Park’s newest home at 1444 Argyle Dr., Fort Myers, FL.

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A positive outcome resulting from the size and scope of The Green House project was research studies that actually show some measurable benefits of our smaller homes.

In 2004 a report presented to the United States Congress by researchers from the University Of Minnesota School Of Public health, found that the use of a social model of care and maximum staff empowerment to serve residents needing long term care resulted in statistically significant favorable outcomes over traditional facilities. The researchers found that elders in a Green House Project Home were able to perform daily functions longer than those in more traditional assisted living facilities.

A 2009 evaluation of Green House Project care found it provided higher direct care (23-31 minutes more per resident per day) than traditional assisted living models and more than four times as much staff engagement with residents outside of direct care activities.

Residents of Green House Project homes have shown increased reports of mobility and social interaction, and fewer reports of weight loss and depression compared with those living in traditional assisted care facilities.

 

Here are some of the main areas that the Green House project is similar to the Cairn Park approach

  • Each resident has his or her own private room. Homes also include a living room, kitchen and open dining area.
  • Residents are, on the whole, free from scheduling and allowed their own personal freedom regarding waking, sleeping, activities, and meals.
  • The homes are built to blend in with surrounding houses and neighborhoods.
  • Residents do not have strict schedules and are encouraged to interact with staff and other residents and visitors. Staff members and residents develop personal relationships with one another because of the small community and home atmosphere.
  • A warm living situation consists of a layout that encourages social activity as well as furnishings and décor that provides comfort.

 

At Cairn Park, we provide caring homes promoting meaningful lives for people with dementias. Residents can move freely through the home, build deep knowing relationships with staff and each other. Our approach is based on a philosophy seeking to reverse the “enforced dependency” of life in a traditional assisted living or nursing home environment. At Cairn Park, the rhythms of the day are largely determined by the needs of the residents and the schedule and attitude is much less staff-focused.   Our aim is creating a life for our residents that is as full and vibrant as possible.

 

 

 

 

By |April 28th, 2016|View All|Comments Off on Not Your Grandparent’s Nursing Home!

The Hardest Decision! When Does Your Loved One Need a Memory Care Home?

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There is a huge psychological cost of caregiving and of making difficult care decisions that some professionals are likening to the effects of post-traumatic stress disorder. Caregivers may experience symptoms like intrusive thoughts, disabling anxiety, hyper-vigilance and avoidance behaviors. Also the disruptions to normal sleep and eating patterns that result when one is spending so much time on caregiving can create an emotional, mental and physical toll. The caregiver can often feel isolated and alone, or even begin to feel resentful of their loved one.

My Loved One Needs More Help Than I Can Give!

What Now?

It’s important to recognize how much you’ve been giving to your loved one, and perhaps tell yourself, “Okay, I’m not living a life for myself anymore, I’m living for that person.”

Caregiver guilt and grief are common reactions to moving our loved ones with dementia out of their homes. We may feel that we lose our family member twice, once to the disease, and again when they pass. Caregivers may wonder if they could or should have done more; they may feel separation anxiety in moving their loved one to another location.

The decision about WHEN is the right time to move a loved one with Alzheimer’s to a care facility is always challenging,  As someone’s dementia progresses, it is important they are in a safe place in which they have care when they need it 24 hours a day, and where they can continue to be active, both physically and mentally. It requires real skill to know how to continue to keep people with dementia active. At some point it is simply not possible to provide all this yourself, and if you allow your guilt to get in the way of making the best decision for your loved one, you are doing them (and yourself) a disservice.

Often the person with dementia’s greatest fear about moving to a memory care home, may not be living in a community but rather that, if they may feel warehoused in a facility, they will lose their humanness: that they will be neglected or abused and diminished as people.  In doing your research bear two things in mind, you want a home that provides relationship based care, a home that can see your loved one “As they were in their finest hour”  See our blog Relationship Based Care    And one that you can develop a trusting relationship with, see our blog. Who Can You Trust

It is important to keep in mind that if you wait too long, their memory will be so impaired that it will take a much longer time for them to adjust to their “new home” Once there, you can spend as much time as you like with them but as their loved one rather than their caretaker.

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There is more to loving someone than taking care of them. ANYONE can do the physical work of care-giving, but only you can warm them with your presence and love.  Once the physical and emotional work of caregiving is taken off your shoulders you can devote yourself to providing the warm loving moments that only you can provide.  You can visit as often as you like and the time you spend will be quality time. . They will feel warmed and loved by this (RESTED) person who sits with them.

My own mother suffered from dementia and passed away a couple of years ago. When I visited her in her lovely small care home she often couldn’t understand much, but she liked to hold my hand and take me to the garden that was part of the home, she always loved gardening and would point to the different plants, I would visit her 3 or 4 times a week, and we were simply together.  My energy would go toward finding things that pleased her such as a fancy coffee drink or her favorite McDonald’s sandwich.  I knew that she was never, ever alone, and that I could leave her without constant worrying because I trusted the staff of the home.

By |March 21st, 2016|View All|Comments Off on The Hardest Decision! When Does Your Loved One Need a Memory Care Home?

Addressing Transfer Trauma

Moving is the third most stressful event second only to death and divorce, and for those with memory loss it can be very traumatic.

When a move is necessary, the experience may be bewildering at best, and traumatic at worst. But trauma isn’t inevitable. When individuals transfer to good facilities, where the staff has expertise in transition, distress can be minimized and will be eased with time.

Transfer trauma refers to a severe emotional response to the move and may occur before, during and for several months after the move.  Symptoms may include feeling sad, angry, irritable, depressed, anxious and tearful.  The person with dementia may exhibit combative symptoms such as screaming, complaining and other challenging behaviors. They might wander, shut down, withdraw, refuse care, isolate themselves, and refuse to take their medications, Physiological symptoms include confusion, pain, falling, rapid heartbeat from anxiety, sleeplessness, poor appetite, weight loss or gain,  If unaddressed, the consequences of transfer trauma can be severe, potentially resulting in an erosion of cognitive and physical functioning.

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Many people with dementia often still feel capable of living at home and so resist a move. Their insight into their own deficits and needs is impaired, and their belief that they can remain at home safely is strong. In their own home familiarity allows them to have some independence. A move erodes their comfort and confidence, causing fear and anxiety.

The nature of the setting can also be an indicator of the degree to which individuals may suffer. Long term care communities that don’t truly deliver person-centered care and those that treat residents more like a disease than a person will see the greatest amount and severity of transfer trauma.  Some facilities commit ‘identity theft’ meaning that they fail to learn or integrate the individuals, their habits, preferences, or routines.

Long term care communities that discover, honor, and integrate the person’s individuality into care will get the best results.

Families typically respond well if they know what to expect and believe that they have a team that is experienced and skilled in caring for the special needs of their loved one with dementia.

A successful move may often begin with the story. Though seniors with Alzheimer’s or dementia may be physically present with us, in their minds they could be reliving previous times of when they were a child or when they were still married. To make the moving process easier, families can tap into their reality and ask “What do you think is going to happen?” or “Where do you think you are going?” and so build on the story on the level of their reality.

These are the strategies we use at Cairn Park to reduce transition trauma:

  • Our entire team spends time learning the life story of the resident through communication with family members, this information provides our staff with information about our residents’ lives, habits, preferences, routines, and emotions. We use this life story to integrate typical routines activities and preferences into our resident’s day to day experience. Enabling them to feel as if they have gained instead of lost can help our residents move through the adjustment process more expeditiously and smoothly.
  • We work hard to build strong friendships/relationships between staff and residents, and residents and other residents. We find ways to give residents a sense of purpose in the community, whatever that means to them, ensuring it feels like home.
  • We help families understand the importance of setting up their loved ones with things that really remind them of home. It is common for families to think that their loved one with dementia would like their Sunday best clothes when in reality they are more at home in their comfy slippers and favorite mug.
  • We make sure each resident knows they are valued, responded to, and honored, and that their presence has enriched our day.
  • We help families understand what to expect, and that adjustment may take time. It depends on the circumstances, but it may take a month for an individual to adjust to a new home. However being a true home, we have found many individuals who have settled into our small homes without any apparent problems let alone trauma.

At Cairn we promote relationship based care, made easier by the fact that we provide a small home environment, with only five people with dementia residing in each of our homes. Because of this we can assure that a residents move to our home is done in an atmosphere of compassion, respect and understanding, thus reducing as much as possible the trauma that can occur during their transition from their home to their new home at Cairn Park.

 

 

By |February 10th, 2016|View All|Comments Off on Addressing Transfer Trauma

The Sound of Music

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Most of us have experienced the way music can transport us back to long past memories, can calm us, steady us and move us to feel at one with the world.

At a time when my mother who later passed away from Alzheimer’s could no longer recognize me, we could still sing together, which  gave us a great way to connect with shared emotions, take a trip down memory lane and just to simply have fun.

Music is also being shown, to be a great way to break through to dementia patients.

 The late, Dr. Oliver Wolf Sacks, a highly regarded British neurologist and author, has become widely known for writing best-selling case histories about his patients’ disorders. Some of his books have been adapted for film and stage. Dr. Sacks statesThe past which is not recoverable in any other way is embedded, as if in amber, in the music, and people can regain a sense of identity. . .”

Sacks goes on to say that improvements of mood, behavior, even cognitive function—once set off by music can sometimes persist for hours or even days in people with dementia.

Read more:  Music and our Brains

 Perhaps most remarkably, people with Alzheimer’s disease and other dementia’s can respond to music when nothing else reaches them.  Alzheimer’s can totally destroy the ability to remember family members or events from one’s own life—but musical memory somehow survives the ravages of disease, and even in people with advanced dementia can often reawaken personal memories and associations that are otherwise lost.

Alive Inside: A Story of Music and Memory is a 2014 American documentary film directed and produced by Michael Rossato-Bennett.  The film which premiered in the Sundance Film Festival, won the Audience Award:  The film deals with the subject of people living with Alzheimer’s disease and shows how music can help and ease their suffering.

As producer Rossato-Bennett says, “It is not a cure.  It is not a drug, – but we can use music to make people happier, to help them age in place more easily”

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Dr. Laura Mosqueda, Director of Geriatrics at the University of California, Irvine School of Medicine, explains that because music affects so many parts of the brain, it touches areas that may not be damaged by the disease and brings those pathways to the forefront. The result is the astounding “awakening” that often occurs.

 Here are five reasons why researchers believe that music boosts brain activity:

1.  Music evokes emotions that bring memories.

Music evokes emotion, and emotion can bring with it memory. It brings back the feeling of life when nothing else can. By pairing music with every day activities, patients can develop a rhythm that helps them to the recall the memory of that activity, improving cognitive ability over time.

  1. Musical aptitude and appreciation are two of the last remaining abilities in dementia patients.

Because these two abilities remain long after other abilities have passed, music is an excellent way to reach beyond the disease and reach the person.

  1. Music can bring emotional and physical closeness.

In the later stages of dementia, patients often lose the ability to share emotions with caregivers. Through music, as long as they are ambulatory, they can often dance. Dancing can lead to hugs, kisses and touching which brings security and memories.

  1. Singing is engaging.

As singing activates the left side of the brain, listening to music sparks activity in the right. With so much of the brain being stimulated people with dementia exercise more mind power than usual.

  1. Music can shift mood, manage stress and stimulate positive interactions.

Music can shift mood, manage stress-induced agitation, stimulate positive interactions, facilitate cognitive function and coordinate motor movements. This is because music requires little to no mental processing,

Which Musicals or Movies Work Best?

Getting a loved one with dementia or Alzheimer’s to engage with music and movies may depend on which genre they enjoy the most. But the suggestions below can help you get started:

  • The Sound of Music
  • When You Wish Upon a Star.
  • Somewhere Over the Rainbow.

Many care facilities report that residents are happier, more engaged, and much calmer with the use of music therapy. They note that staff members are able to create more meaningful relationships with patients, spending less time dealing with behavioral issues. Perhaps most encouraging, some facilities are actually seeing a reduction in the need for psychotropic drugs, which carry with them a set of problems all their own.

One program that brings personalized digital music to the elderly has provided iPod’s to over 140 care facilities in the U.S. and Canada.

Country music superstar Kenny Chesney recently recorded a PSA asking fans to consider donating an MP3 player or making a monetary contribution to support this important work.

The organization also educates elder care professionals and family caregivers on how to create powerful personalized playlists to help Alzheimer’s and dementia patients reconnect with memories triggered by music.

Music and Memory

So let’s encourage our loved ones with dementia to “Wish Upon A Star” and bring to mind the memories of joy that music in their past life has brought them and that we can share with them.

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By |January 10th, 2016|View All|Comments Off on The Sound of Music

Caregiving and the holidays: from stress to success!

 

 

 

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While everyone else is enjoying the hustle and bustle and the joy of the holiday season, there are many caregivers out there who just want the whole thing over with. Care-giving creates a level of stress unmatched by most endeavors. Add to that the extra stress of family gatherings, gift buying, cooking, and other obligations and it is almost unbearable. How can caregivers better cope with this stress on top of stress?

As a caregiver for a loved one with dementia, it is important to try to maintain a sense of familiarity for the one we are caring for. Confusion and unfamiliar changes can be challenging to anyone so imagine then how too much change can affect one with memory problems.

The key is to pace yourself, as well as to help your loved one do the same, so that neither of you will feel completely drained, depressed or overwhelmed, especially during such a special time of year.

During the holidays it is important for caregivers to seek a balance, between caring for someone else and caring for oneself; between celebrating good memories of past holidays while not dwelling on what might have been lost.

Here are some tools to decrease stress and enjoy the season as a caregiver.

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Gradually introduce decorations, lights, music etc:  Cairn Park’s Stu Gaines designed and implemented a study in the early 1990’s in conjunction with university of Wisconsin.  The published study demonstrated that by introducing decorations slowly over a 2 – 3 week period, into a home or facility, there were little or no behavioral changes with the residents.  However instantaneous changes elicited a dramatic spike in the number and severity of challenging behaviors in people with dementia.  The same applies to the end of the holidays, slowly remove the decorations etc. over a period of a few weeks.

Another good idea is to try to maintain the same furniture floor pattern. For someone who may be a little confused at times, moving the furniture around may totally throw them off and lead to more confusion and agitation.

 

Simplify:  With the large number of extra tasks involved in your traditional holiday it may make sense to simplify by reducing or eliminating some of your usual rituals, recipes, events etc.

Ask yourself the following questions:

Would the holidays be the same without it?

Do I do it out of habit, tradition, free choice, or obligation?

Is it a one person job, or can I ask someone to share it?

Can someone else do it?

Do I like doing it?

 

As much as possible keep your loved one on their regular routine: Try to schedule the major activities for the day early in the day. We know that as the day wears on we all tend to become tired under normal conditions. For someone who is struggling to find their place in an already confusing world, the stress and agitation increases as the day goes on. Saving a time of sitting and quietly visiting towards the end of the day would benefit all concerned. Talking of past holiday customs and recipes may be enjoyable for your loved one, if they have long term memory recall.

If your loved one becomes agitated, try to remove them to a quiet area of the house either with yourself or someone they trust.

Prior to the onset of any behavioral problems during a holiday gathering, prepare distractions such as a family album to draw the person’s attention away from their problem.

 

Include your loved one in some holiday preparations:  Focus on their remaining strengths, and let them use their own capabilities to help with small tasks. It makes them feel that they are being useful while at the same time helps to occupy them so you are also able to get on with other preparations. Have them do a repetitive task, such as folding napkins, peeling potatoes, mixing cake batter that will help keep them calm.

Try not to schedule too many social events, one right after another:  It’s better to miss out on a few holiday events than to end up with yourself or a loved getting too exhausted, and don’t feel guilty about telling someone “no” when asked to participate in yet another holiday function.

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If possible limit the number of guests so that the amount of confusion is lessened. Keep the numbers small, for example 10 or 12 persons in a home can cause agitation and anxiety.  Keep in mind that the more noise that is present; the more confusion will be evident. Large crowds will be a problem

Make guests aware ahead of time of the emotional state of the one you are caring for. You could even send them material to read giving them an overview of the disease if they are unaware of what it entails. This would also be an excellent opportunity to prepare friends and family for the changes they might see in your loved one, especially if they have not been to visit in some time.

With guests in and out of the house, be sure that someone is aware at all times of where your loved one with dementia is. If they tend to wander there is a chance that they may wander off while everyone thinks that everyone else is watching.

Ask guests to bring a dish.  A potluck is a great idea; you can even assign specific dishes to ensure that a complete dinner is provided.

 

Self-Care

Try to keep up on your regular exercise routine, or start one, during the holidays. Walking five times a week is a great way to stay in shape. There is also something about pounding the pavement that helps release frustrations and clears your head.

Do some laughing.  There is nothing that cuts through stress more than humor.  Rent a good comedy, have family and friends reminisce over humorous events over the years.

Don’t be afraid to ask for help, and to delegate holiday tasks among family and friends. Be careful about spreading yourself too thin by volunteering to help others. It’s okay to say no, and when you do, make it short and simple, and don’t apologize;

Finally, be sure to fit some time in for yourself this holiday season. If you have the extra people there, then use them to your advantage. Take a few minutes sometime during the day to pamper yourself! Remember this is your holiday too, and do not be afraid to let family know that a little quiet time for yourself could be a gift beyond measure.

 

 

By |November 27th, 2015|View All|Comments Off on Caregiving and the holidays: from stress to success!

Alzheimer’s Fundraising Events

 

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The Alzheimer’s Association Walk to End Alzheimer’s is the world’s largest event to raise funds for Alzheimer’s awareness, care, support and research.  Held annually in more than 600 communities nationwide this inspiring event calls on participants of all ages and abilities to reclaim the future of millions.  Alzheimer’s disease is the nation’s sixth leading cause of death.

History:

First named the Memory Walk, this event began in 1989 with nine Alzheimer’s Association chapters raising $149,000 from 1,249 participants.  In 1993 Memory Walk grew into an event nationwide and raised $4.5 million at 167 locations. In 2014 more than 49,000 teams participated in more than 600 Walks across the country, raising more than $67 million.  The Alzheimer’s Association has mobilized millions of Americans in the fight against the disease and now continues to lead the way..

Along with individual walkers, the association encourages people to form teams, usually recommending teams of 8 – 12; however there is not required number of people.  Teams are asked to tell their friends, family and coworkers why they are walking and ask them to join them.  The organizers encourage participants to reach out to friends and family via e-mail and social media to encourage support and donations

Teams come up with creative names; a few to mention are Marilyn’s Mighty Memory Makers, Early Stage Warriors, A Walk to Remember and Ruthie’s Angels.  Many teams are named in honor of a loved one who suffers from the disease.  Some teams manage to get way more than the recommended 8 to 12 participants.  One notable team this year is Bill’s Buddies out of Columbus Ohio with a whopping 194 members, they overtook their goal of raising $50,000 and have to date raised $57455.  Many teams have touching stories such as team #12 captained by Seattle Seahawks’ J.R. Sweezy who has a side other than the tough offensive guard most people know.  J.R’s grandfather Papaw Gene, a successful businessman was diagnosed with Alzheimer’s disease nine Years ago.  After seeing his maternal grandfather’s drastic decline last April, J.R and Gissell decided to create the #12’s Walk to End Alzheimer’s team. “If we are raising money and have the right people researching and understanding maybe we will find a cure one day” said J.R. “I want to raise awareness from coast to coast.  We’re helping now for the future.  It’s too late for Papaw Gene, but not for our kids.  J.R. only gets to visit his Papaw two or three times per year, but even now in the late stages of Alzheimer’s disease. Papaw Gene will sometimes ask “Is that the boy that plays football?”

Other fund raising events to raise awareness and donations to fight Alzheimer’s

The Rita Hayworth Gala      e

In 1980 actress and dancer Rita Hayworth was diagnosed with Alzheimer’s disease, which contributed to her death in 1987 at age 68.  The public disclosure and discussion of her illness drew international attention to Alzheimer’s, a disease that had been virtually forgotten by the medical community since its discovery in 1906. , and helped to greatly increase public and private funding for Alzheimer’s research.  The Rita Hayworth Gala, a benefit for the Alzheimer Association, is held annually in Chicago and New York City.  The program was founded in May 1985 by Princess Yasmin Aga Khan, in honor of her mother.  She is the hostess for the events and a major sponsor of Alzheimer’s disease charities and awareness programs.  As of August 2015 a total of more than $65 million had been raised through these events

A Night at Sardi’s          b

 

A night at Sardi’s is an event started in 1992 by Laurie Burrows Grad in memory of her father, writer and directory Abe Burrows, who died from Alzheimer’s disease.  The evening of entertainment with many television stars has raised over $16 million for the Los Angeles Alzheimer’s Association.  The benefit is chaired by Lauri Grad and her husband, Peter Grad, former executive vice president of 20th Century Fox Television

Memories in the making                     d

This year’s Memories in the Making art auction featured 53 treasured watercolor pieces, all painted by individuals with Alzheimer’s and raised more than $150,000 to help the Chapter continue to offer services and resources for individuals with Alzheimer’s, their families and caregivers.

Blondes vs. Brunettesc

Blondes vs. Brunettes is an annual women’s flag football game in which the two participant teams are divided based on the age old rivalry between blondes and brunettes.  Both teams toss their division aside when it comes to their common reason for participating, to raise money and awareness for the Alzheimer Association Heart of America Chapter. The 2015 game was held on August 8th.  The players and coaches raised a combined $48.494, making this year the best fundraising year yet for Blondes vs. Brunettes.

Much more is needed to raise money to fight this terrible disease, these events are just a drop in the bucket, but as more people become aware of the disease and as the baby boomers reach the age where more and more are dealing with Alzheimer’s and other dementia’s,  we hope that events to raise awareness will increase exponentially.

By |November 14th, 2015|View All|Comments Off on Alzheimer’s Fundraising Events

Opening The Mind With Art

                                                     old lady painting

Out of the many precious faculties that dementia robs from a person, artistic ability does not seem to be one of them! While a person with dementia may think the same thoughts or carry the same fears, the ability to transmit those thoughts and feelings diminishes as the disease worsens. Communication is one of the early losses in a person with dementia, yet creative expression could be the key that unlocks what dementia keeps so painfully inaccessible.

Recent studies show promising results for dementia patients whose artistic ability has allowed them to communicate with loved ones and caregivers. One such study focused on internationally renowned sculptor Mary Hecht before her death in April 2013. Hecht’s artistic abilities were renowned before her battle with dementia, but what doctors found fascinating was her propensity to draw detailed sketches and portraits, all from memory, in the years leading up to her death. This was all in spite of a severe case of vascular dementia.

Due to her previous strokes, Hecht was bound to a wheelchair. Her cognitive ability was so impaired that she couldn’t reproduce the correct time in a simple drawing of a clock; she also couldn’t remember any of the words she was asked to recall or name common animals. Yet she was able to reproduce from memory a drawing she had done free-handedly moments earlier. She also drew a detailed portrait of a research assistant at the hospital’s memory care clinic.

Mary Hecht was a remarkable example of how artistic abilities are preserved in spite of the degeneration of the brain and a loss in

the more mundane, day-to-day memory functions.

         Communicating What Words Can’t!

Cases similar to Hecht’s abound in memory care facilities practicing art therapy.  It seems that art therapy enables an individual who is having trouble communicating to bypass the language problems they may be having and communicate and express themselves in a different way. Art and music seem to draw from many different regions of the brain, communication pathways are rerouted away from traditional means and the production of art appears to bypass some of the other problems of dementia.

While these forms of therapy cannot cure a person’s dementia, they can offer substantial rewards that a person may not otherwise receive in such an impaired state. These come from personal accomplishments, the satisfaction of completion, and simply the joy of the artistic process.

Berna Huebner, author of “I remember better when I paint” and Eric Ellena have crafted a poignant documentary about hope in a world where hope is seldom found.

Cairn Park Owner and CEO Stu Gaines a current board member of the Alzheimer’s Association was recently invited to represent the Alzheimer’s Association at a select showing of the documentary and had the opportunity to meet with Berna.  See photo below.

berna stu corp 2015.8

I Remember Better When I Paint” follows the progress of persons with Alzheimer’s who are introduced to the creative arts. Once disconnected from the world, these dealing with the challenges 0f Alzheimer’s disease are suddenly brought back– be it by a discussion of a Seurat painting or a debate over what color to apply for their Renoir reproduction.

It is easy to think of people with dementia as elderly persons spaced-out in front of a television set, and yet the documentary shows Skip Curtis a man actively engaged in his community suddenly subject to severe memory loss and diagnosed with Alzheimer’s at 59. The documentary begins with him and his wife in a doctor’s office discussing experimental treatments to slow the effects of his Alzheimer’s. The couple holds hands as they share their disappointment with conventional treatments and their openness to try alternative remedies. We see Skip struggle to remember his experience with pharmaceuticals and his wife encouragingly filling in the gaps. This is one of the many moving moments in a film about the human spirit and the fight to keep it alive.

The myth about Alzheimer’s is that it is a veritable death sentence. That once diagnosed, a person will ultimately deteriorate into an unrecognizable shell of his/her former self. But as the filmmakers demonstrate, this need not be the case. The creative arts can reunite even a late stage Alzheimer’s sufferer with parts of his/her former self. These non-medicinal options render success rates comparable to their pharmaceutical counter-parts. Indeed, art therapy can provide outlets of expression for a person with Alzheimer’s where conventional means of expression prove insufficient.

I Remember Better When I Paint” is narrated by Oscar-winning actress Olivia de Havilland (of Gone with the Wind) and features a stirring interview with Yasmin Aga Khan, daughter of acclaimed American actress, and Alzheimer’s sufferer, Rita Hayworth, who took up painting while struggling with the disease and produced beautiful works of art also featured in the film.

Cairn Park supports and incorporates this philosophy of integration of the arts into its programs.  Stu Gaines a Cairn Park partner and  CEO states “We believe that participation in the creative arts by our residents promotes health and well- being by stimulating curiosity and self-evaluation, by encouraging individuals to express themselves in meaningful ways, and by affirming their dignity and self-worth.”

Creative arts are practices that can allow a person with dementia to express their true self when they otherwise can’t.

 

 

 

By |September 15th, 2015|View All|Comments Off on Opening The Mind With Art

You’re Invited to Advances in the Treatment of Inapproporiate Crying or Laughing

JOIN US FOR A PRESENTATION WITH:
Renato De Los Santos, MD — Psychiatric Perspectives
Hoffman Estates, Illinois

Cairn Park Flyer

Click to Enlarge

 

By |May 19th, 2015|View All|Comments Off on You’re Invited to Advances in the Treatment of Inapproporiate Crying or Laughing
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