Saturday, 6 February 2016

HOME: The Making of a Sanctuary

Guest Post by Vickie Cammack (Originally published in Safe and Secure: Six Steps to Creating a Good Life for People with Disabilities by Al Etmanski)



For one glorious summer in the '70's, an old tamarisk tree with wide sweeping branches down to the sand of a Greek beach was my home.  Its branches opened like welcoming arms to form my front door.  When friends came to call, they knew I was home if they saw my sandals carefully set to one side.  Inside there was a special crook in one branch that held my cup and toothbrush and plenty of twigs to drape my scarves on.  My tree gentled the sun's rays by day and let the stars peek through at night.  I felt safe and sheltered by this kind tree.  My tree space felt lived in, by me, by others before me and of course by various wildlife who shared it with me.  It was definitely the place that felt the most like home during that sun-kissed summer.

One of our treasured family stories is the account of my mother, who upon reading a letter containing my starry eyed account of my life in Greece, burst into tears and wailed, "She's living in a tree!  A tree!" For her, my breezy home was not and never would be a home.

That's the thing about a home.  It is a very personal feeling. Not so much a place as a space. It is a space that breathes and nourishes us. A space becomes a home when it opens to us as we are, and when we in turn, get worn into it.  Creating this kind of home space when a person is vulnerable or isolated is complex. As families, we are often caught in the paradoxical challenge of finding spaces that both open doors and secure locks.  This is why cultivating and consulting caring connections beyond us is so important for our loved ones.  Standing together, we can peek out, open the curtains of our own comfort zones and imagine the living, breaking spaces our loved ones can grow their way into.  And out of.

Just as no tree lives forever, no home, no matter how well planned, financed and built, is ever permanent.  True durability lies in the long arms of others who will care for our relatives beyond our lifetime.  It is an embrace that will nourish and honour the spirit of our loved ones wherever they may live.

Note from Donna: Vickie Cammack is my friend and colleague in caregiving whom I hold in very high esteem.  Vickie is a recipient of the Order of Canada for her pioneering work in developing models of personal support networks for vulnerable people at risk of social isolation, including the creation of Tyze Personal Networks.  Currently, Vickie and I are co-writing a book about caregiving.  We don't have a title yet, but we guarantee that it will be interesting. 


Monday, 1 February 2016

TREATING OURSELVES AS WE WOULD TREAT OTHERS

This is a sponsored post written by me on behalf of Elizz for IZEA. All opinions are 100% mine.

Recently, I was chatting with friends about why caregivers have so much trouble asking for help.  “Maybe it’s because asking for help sometimes feels like a betrayal of the person we love who needs care,” I suggested.  “I ask myself if I am behaving like a dutiful daughter.  So if I ask for help, I’m not being dutiful and I feel guilty”, my friend nodded thoughtfully. 

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Picking apart our complicated feelings about love and obligation is essential in making peace with our emotions about caregiving. And to do that, we must be truthful and compassionate … to ourselves.  A good place to begin self-understanding is by completing the 5 Stages of Caregiving Quiz on the Elizz website.  I completed the quiz myself and scored INTENSIVE:  Often the longest caregiving stage, with complex and increasing care needs.  Individual self-identifies as a caregiver.  Without support, caregiver may be unprepared and experience unchartered emotions, family conflict and greater impacts on home/work life with risk of burnout and health issues.  With support, caregiver may develop a sense of competence, strength.

I am relieved to say that after twenty-seven years of caregiving, I do experience a sense of competence and strength.  Over the years, I’ve realized that a key to being at peace with myself has been in the way that I think about my caregiving role.  A few years ago, I began to understand that my loved ones had dependency needs that were separate from their personalities.  For me, this was a watershed moment.  My mother could still be my mother if a personal support worker helped her most days with shopping and meal preparation.  My son will always want me if he is ill or in pain, but now that he’s grown up, he wants another man to help him shower and change.

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Part of the reason that I experience a sense of competence and strength is because I feel good about asking for help – from family members, friends and paid support workers.  Within those circles of support, we all care for my loved ones, but we care for each other and for ourselves, too.

There are lots of quizzes and resources on the Elizz site such as the Styles of Caregiving Quiz. Browse to reflect on your personal caregiving stage and how you feel about your role.  There are many services available to assist families, but only you will know which Elizz caregiver services are right for you. Which Elizz caregiver services are right for you?

Visit Sponsors Site

Sunday, 24 January 2016

STILL ALICE, Strong Portrayal of Dignity in Early Onset Alzheimer's

by Guest Blogger Maria Theresa

Alzheimer's doesn't just change the lives of its sufferers, but the lives of their family and friends as well. Those who witness the decline of someone affected by the illness typically expend a great amount of time, money, emotional and physical energy caring for their loved ones. Still Alice (2014), a riveting movie about early-onset Alzheimer's, depicts the many aspects of living with the disease and caring for someone who has it.



In the film, Julianne Moore plays Dr. Alice Howland, a linguistics professor who starts to notice that something is wrong with her memory around her 50th birthday. After a positive diagnosis of early-onset Alzheimer's, Alice struggles to cope with her rapid decline, and her family -- husband Dr. John Howland, played by Alec Baldwin, and her three grown children -- struggle seeing the woman they once knew not only lose herself but her memory of them as well.



Films that cover the subject of Alzheimer's usually show the emotional and physical toll the disease takes on those who have it, but what is often kept off-screen are the heart-wrenching indignities that come along with being an Alzheimer's patient. There are several moments in Still Alice that leave the audience feeling uncomfortable, but these scenes do depict the truth of what actual Alzheimer's patients go through. In one such scene, Alice forgets where the bathroom in her own home is located, and accidentally wets herself. In another part of the movie, Alice visits her daughter, Anna, in the hospital after she has given birth to twins. While in awe over the babies, Alice doesn't recognize who Anna is. This is especially heartbreaking as Anna herself tested positive for the Alzheimer's gene, and the audience is well aware that she has a significant chance of suffering the same fate as her mother.
The choice made by directors Richard Glatzer and Wash Westmoreland to include the raw side of Alzheimer's that strips patients of their dignity was definitely bold. Through every step of her decline Alice strives to hang onto herself and remain, as the film's title states, "still Alice". Ultimately, she fails to hold onto the person she used to be, but for the movie to be in any way realistic this is how things needed to play out. All forms of Alzheimer's steal a patient's memories, personality, and former life. But not only are those living with the disease affected, it often drastically alters the lives of family members and caregivers as well.

Alice's husband, John, largely outsources his role as a caregiver due to his demanding career as a physician. In this respect, Alice is quite fortunate as many Alzheimer's patients don't have the financial wherewithal to afford excellent full-time care. Alice's eldest daughter, Anna, and her son, Tom, check-in with their mother as much as they can, but are unable to be day-to-day caregivers because of their own personal and professional commitments. This scenario is something that is much more common in the lives of Alzheimer's patients, who need increasing amounts of care as the disease progresses.

Alice is once again more fortunate than many actual Alzheimer's patients, as her youngest daughter, Lydia, is willing and able to temporarily put her acting career on hold and move across the country to care for her. This act of love combined with the work of her dedicated professional caregiver, and financial stability provided by her family's wealth, guarantee Alice the best possible palliative care that she can get.

These financial and familial advantages aside, the film sends an important message: no matter how much money or support one has, Alzheimer's inevitably takes the same toll on each and every person who has the disease. Still Alice (available on Xfinity and DTV) has been praised as an excellent portrayal of the disease by the Alzheimer’s community, and is an excellent film to watch by viewers directly involved Alzheimer's doesn't just change the lives of its sufferers, but the lives of their family and friends as well. Those who witness the decline of someone affected by the illness typically expend a great amount of time, money, emotional and physical energy caring for their loved ones. Still Alice (2014), a riveting movie about early-onset Alzheimer's, depicts the many aspects of living with the disease and caring for someone who has it.


In the film, Julianne Moore plays Dr. Alice Howland, a linguistics professor who starts to notice that something is wrong with her memory around her 50th birthday. After a positive diagnosis of early-onset Alzheimer's, Alice struggles to cope with her rapid decline, and her family -- husband Dr. John Howland, played by Alec Baldwin, and her three grown children -- struggle seeing the woman they once knew not only lose herself but her memory of them as well.

Films that cover the subject of Alzheimer's usually show the emotional and physical toll the disease takes on those who have it, but what is often kept off-screen are the heart-wrenching indignities that come along with being an Alzheimer's patient. There are several moments in Still Alice that leave the audience feeling uncomfortable, but these scenes do depict the truth of what actual Alzheimer's patients go through. In one such scene, Alice forgets where the bathroom in her own home is located, and accidentally wets herself. In another part of the movie, Alice visits her daughter, Anna, in the hospital after she has given birth to twins. While in awe over the babies, Alice doesn't recognize who Anna is. This is especially heartbreaking as Anna herself tested positive for the Alzheimer's gene, and the audience is well aware that she has a significant chance of suffering the same fate as her mother.
The choice made by directors Richard Glatzer and Wash Westmoreland to include the raw side of Alzheimer's that strips patients of their dignity was definitely bold. Through every step of her decline Alice strives to hang onto herself and remain, as the film's title states, "still Alice". Ultimately, she fails to hold onto the person she used to be, but for the movie to be in any way realistic this is how things needed to play out. All forms of Alzheimer's steal a patient's memories, personality, and former life. But not only are those living with the disease affected, it often drastically alters the lives of family members and caregivers as well.

Alice's husband, John, largely outsources his role as a caregiver due to his demanding career as a physician. In this respect, Alice is quite fortunate as many Alzheimer's patients don't have the financial wherewithal to afford excellent full-time care. Alice's eldest daughter, Anna, and her son, Tom, check-in with their mother as much as they can, but are unable to be day-to-day caregivers because of their own personal and professional commitments. This scenario is something that is much more common in the lives of Alzheimer's patients, who need increasing amounts of care as the disease progresses.

Alice is once again more fortunate than many actual Alzheimer's patients, as her youngest daughter, Lydia, is willing and able to temporarily put her acting career on hold and move across the country to care for her. This act of love combined with the work of her dedicated professional caregiver, and financial stability provided by her family's wealth, guarantee Alice the best possible palliative care that she can get.


These financial and familial advantages aside, the film sends an important message: no matter how much money or support one has, Alzheimer's inevitably takes the same toll on each and every person who has the disease. Still Alice (available on Xfinity and DTV) has been praised as an excellent portrayal of the disease by the Alzheimer’s community, and is an excellent film to watch by viewers directly involved with the illness, as well as those who want more insight into early-onset Alzheimer's.
Maria is a freelance writer currently living in Chicago. She has a Bachelor of Arts degree in English from the University of Illinois at Chicago with a minor in Communication. She blogs about environmentally friendly tips, technological advancements, and healthy active lifestyles.

Sunday, 17 January 2016

Rhetoric vs Reality: The Real Role of Families in Hospital Care

If you've ever gone to the Emergency Room with someone you love who has mobility or cognitive impairments, you know that hospitals are very unsafe places for vulnerable people.  Unless your loved one needs life-saving care such as in the Intensive Care Unit, you know that family caregivers are essential conduits between patient and professionals.  Not only that, but we perform a good deal of personal care to boot.  The problem is, the clinic and administrative hierarchy of hospital professionals don't admit to the critical role that families play.  In fact the messaging on hospital websites invites the public to believe that families simply provide an antidote to the stress of acute illness and being away from home.  Even though family caregivers of frail seniors, cognitively impaired adults or children with disabilities ensure the safety and often the physical comforts of their loved ones, hospitals still charge anywhere between $14 and $25 per day for 'visitor' parking.

Here's what one adult hospital wrote about visitors on its website: We encourage you to visit your loved one at any time because we know that having family and friends nearby helps reduce anxiety and isolation and improves healing and recovery for our patients. 


In the case of Children's Hospitals, parents are encouraged to 'take part' in their child's care.  This is the way one major hospital phrases the parental role on the website: 
Parents are encouraged to take part in their child’s care. You may stay overnight and sleep on the sofa in your child’s room for the duration of their stay. Each in-patient floor has a family room for you and other family members to use while visiting your child. The rooms have a kitchenette, appliances, and lounge chairs.
The implicit message to parents is that they are more than welcome to move in with their sick child. But what is not explicit is how central a role the parents will play in their child's care while in hospital. The reality of hospital care today is that nurses, doctors and therapists perform assessments and procedures from time to time, but they cannot attend to the patient all day, every day. Assistance with nearly all activities of daily living is up to families and this is particularly true for patients with disabilities or chronic impairments of any kind. Today's wards are staffed based on caring for a sick, but otherwise independent patient population.  But the reality is that the more dependent the patient, the more he or she needs a family caregiver in the hospital.  

And the centrality of the family caregiver role in hospital increases with the complexity of the chronic care patient's needs.  The Alzheimer's patient who also has diabetes along with challenging behaviour cannot be managed on a regular ward without a vigilant son or daughter by the bedside to help keep things under control. Nurses and doctors who trust the knowledge and capacities of 'frequent flyer' parents of medically complex children expect those parents to give their child 24 hour skilled care while in hospital. Some parents describe 'family centred care' as 'parents, do it yourself care'.  
None of this is the fault of the highly trained and compassionate staff in hospitals.  It's simply an uncomfortable stage in the evolution of contemporary healthcare - caught somewhere between the old model of paternalistic medicine and the contemporary reality of cutbacks, sicker people and an aging population. 
Family caregivers WANT to help look after their loved ones. But we need to be recognized as essential components of the treatment team and we need the ability to set limits on the number of hours we put in at the bedside. Just because family care is borne of love and is unpaid, it shouldn't be deemed arbitrary, frivolous or a luxury.  Family care is essential in hospitals, so let's start talking about it that way.

UPDATE NEWS FLASH: One day after I published this, a news article appeared in Ontario, Canada, announcing that the Minister of Health had mandated half price parking passes for 5, 10 or 30 days. Passes can be transferrable between patient and caregiver. Apparently the cost of one-day passes will remain the same. http://news.nationalpost.com/news/canada/ontario-hospitals-will-have-to-offer-discount-parking-passes-health-minister-says.  One tiny step to support the essential role of family caregivers in hospitals. 

Wednesday, 13 January 2016

A New Age of Caregiving: Grandchildren Caring for Grandparents


By a Seniorly Contributor

When we think of millennials, we often focus on their digital technology-driven culture and overlook the fact that they are some of the smartest, most selfless people we know. Millennials these days are driven by a desire to help others, and the careers they choose reflect this. In fact, we seem to be entering an entirely new age of caregiving, one in which millennial grandchildren set aside personal goals in order to support their aging loved ones.

The National Alliance for Caregiving and the AARP Public Policy Institute recently shared Caregiver Profile Fact sheets from their Caregiving in the U.S. 2015 data. One of those profiles focuses on millennials - caregivers aged 18 to 34.  

According to this profile, the typical millennial caregiver is 27 years old and is just as likely to be male as female (a difference from the traditional caregiver profile). These young adults are generally caring for a 60 year old female relative, most often a parent or grandparent who needs help with a physical condition.  



In many cases, the care they provide is comparable to that of the typical caregiver. Although they have been providing care for a shorter period of time (just under three years on average) they spend over 20 hours a week helping with daily living and personal care. Half of millennial caregivers do not have any additional support. They are what researchers call primary caregivers - the person in the family who does most of the caregiving tasks. Others are secondary caregivers. They help the primary caregiver with both hands-on care and decision making. Tertiary caregivers help periodically with things like grocery shopping or yard work, but don’t make decisions regarding elder care.
Grandchildren are probably not the first people that come to mind when we think of primary caregivers. But one out of 12 caregivers are caring for a grandparent and 8% of all caregivers over the age of 18 are grandchildren. That’s 5.3 million grandchildren caring for grandparents.

Although grandchildren caring for grandparents is common in some cultures, it’s new to many in the United States. In the U.S. context, grandchildren caregivers are an “out-of-time” event, meaning they take on this role at a point in adult development when we tend to focus on other things. Most of us expect to care for a loved one someday, usually later in life when we have a parent or spouse who needs care. Caregiving earlier in life can sometimes lead to delaying education, careers, romantic relationships and parenthood.  
Still, research by Christine Fruhauf, PhD (Colorado State University) and Nancy Orel, PhD (Bowling Green State University) found that grandchildren have a positive view of their role as caregiver and offer some creative solutions to the challenges they face while caregiving.

For some grandchildren, they are just being supportive and compassionate toward older family members. Others are filling in after a parent or grandparent died. However, most see their caregiving as reciprocal - caring for the grandparent who cared for them when they were younger. They want their grandparent to be happy and recognize that he/she won’t always be around. Grandchildren are happy to provide care now because they know they will miss their grandparent when they are gone.

There are many things grandchildren like about their caregiving role. It helps them learn more about themselves and their family. They also form a closer relationship with their grandparent, as well as a stronger bond with other family members. They develop skills such as patience, resourcefulness and compassion. Some even consider studying gerontology or other related subjects in college. Plus, caring for a grandparent makes them feel good about themselves.

Of course, there are things grandchildren don’t like as well. Caregiving can be very time consuming and stressful, especially for young, busy adults. As a result of filling this role, millennial caregivers have less time to spend with friends. Sometimes they even have to sacrifice a career, finances and other personal goals in order to meet the needs of their elders. This role can often wear on caregivers, leading them to develop anxiety or other stress-related issues.

But people in this role also learn to cope. Spending time on things like hobbies, religious activities andsocializing is important. And when time is short, young caregivers learn to adapt to the situation. Some grandchildren talked about taking a grandparent on dates or having friends come visit at their grandparent’s house.  

RESOURCES

Overall, caring for a grandparent is a positive experience. Here are some tips and resources that can help.

Seniorly offers a variety of useful resources and tools.

If you or your grandparent live in California, the Seniorly search engine helps you make senior housing decisions based on care needs, your monthly budget, the size of communities and a time frame of when your elders want to move. It’s important to have conversations early on with your grandparent about their long-term care needs. The Seniorly Resource Center has many articles that can help, such as:

  • Deciding what type of senior housing is right for them
Other useful resources include:
The HBO documentary “Grandpa, Do You Know Who I Am?”  
The Alzheimer’s Association search tool for finding programs and services in your area