Towards Effective Communication

  • By Sue Ellis
  • 06 May, 2016
Towards effective communication with those cognitively impaired by Alzheimer’s disease or other dementias.

1.    Gain Attention

No information will be retained if the individual is not attentive or concentrating on the person giving instructions. Gain eye contact, call out the individual’s name, touch her and do not begin to talk until you are sure you have her attention. If hearing is a problem, never call out instructions when the back is turned, when a distance away or calling from another room. The sound will be a jumble of noise, which has no clarity.

2.    Break down task into stages

Those with memory problems have difficulty retaining a multistage command such as “After you have finished shaving put on your blue shirt and gray trousers, and don’t forget to comb your hair.” With all this information the person with a dementia does not know where to begin. Recall will be confused and the individual will become frustrated, afraid of failing and may refuse to attempt the task. You must decide on the sequence needed to complete the task.

3.    Give instructions one step at a time

Give only the information that is relevant at that time. Let all the clues in the conversation be geared to the fulfillment of that one step. Only when it has been completed should you move on to the next instruction.

4.    Avoid ambiguity

Language is lost in dementia. It is not just the forgotten word, but the language becomes more concrete and is interpreted more literally. Ambiguity therefore leads to misinterpretation. Humour, which depends so much on a play on words, the double entendre, is not understood. The individual may be able to use long-term memory to tell a joke, but may not get it when told one. Euphemisms must be avoided. We must explain precisely what we mean. To “Make a bed” literally means to get out the hammer and nails; “do you need a washroom” does not literally mean, “do you have to pee?” The question “how many children do you have” may be met with the answer “I don’t have any children.” Whereas the correct answer may be produced by asking “how many sons/daughters do you have?”. In the mind of the concrete thinker, children are youngsters and have not grown up. Our words must be more literal, have less flowery descriptions and be to the point.

5.    Limit distractions

Those with a dementia have difficulty interpreting the stimuli that bombard them. We may hear the siren from a fire truck in the distance, recognize what it is, assess that it is not coming to our house and then tune it out. For the person who is cognitively impaired that sound is of unknown origin and will distract her from the task at hand. It will occupy her thoughts and your words will be lost. The radio or TV playing in the background may not distract you, but it will certainly absorb the person who is having difficulty understanding and focusing on her environment.

6.    Speak slowly and clearly

We must slow down our speech to the speed of the impaired person’s thinking. We must speak clearly to aid the hearing impaired and to ensure our words are not misinterpreted. When the mother tongue is not the one you are communicating in ensure your language is straightforward. Words from a second language are often lost and individuals may return to their mother tongue.

7.    Use visual clues, gestures, demonstrations, pictures

Many who have dementia suffer from perceptual problems. That is, they have difficulty correctly interpreting the stimuli they receive from their environment. This may show itself through failing to understand verbal instructions, read warning signs, or recognize familiar objects and their use. If a blue shirt is placed on a blue bedspread, an impaired individual may not be able to differentiate the colours or textures and fail to locate the shirt. If the blue shirt is in a crowded closet, the individual may only see a jumbled mass of colour and not identify the shirt for its whole shape is not visible. He may face the closet, not recognize a shirt and say that there isn’t one there. Or in frustration will just keep putting back on the one taken off the previous evening. Sometimes understanding where the body is in space maybe impaired, dressing and undressing may become difficult. The individual may choose not to undress at all. Some will have difficulty initiating an action or plan a series of actions. Dressing and feeding will become more difficult. To compensate for these losses we must provide the individual with clues. Pictures and gestures may provide recognition when your words do not. Some may be able to mimic the action of another person while being unable to initiate the action. If you gesture with a toothbrush, he may be able to mimic the action. If you guide the spoon to his mouth, he may be able to carry on when the instruction “drink your soup” brought no response. What may be lost is the recognition of an objects use. Therefore the toothbrush may be used like a comb, the razor like a toothbrush. If this is the case we must ensure the safety of the individual and give clues, such as handing the person the correct object for the task.

8.    Repeat

There are so many reasons why a person with a disease such as Alzheimer’s may have difficulty following instructions and performing tasks. Therefore it is important to repeat the information over and over again. We may become angry and wish to shout “but I’ve told you a thousand times…..” but it is important to understand that they are hearing it as if for the first time.

9.    Limit Options

“What do you want for lunch?” May be met with “I don’t want lunch” since the individual cannot conjure an answer out of nowhere.
So you counter with “Would you like a ham and cheese sandwich or an egg salad sandwich?” and the reply is “I don’t know.” Most people with a dementia cannot make a decision and so often will reply “no.” If given a menu in a restaurant she will order what the person before her ordered – even if she has never liked it. So you say “But you never order liver.” Now the person with dementia is embarrassed, anxious, uncomfortable and has really lost her appetite.
Finally you say “How about an egg sandwich for your lunch, okay?” The sandwich gets eaten.
It is only by trial and error that we find out at what level the decision-making ability is. But by giving choice we can offer a sense of control and confidence. Sometimes that choice is purely agreeing with the decision we have made. We would not want to say “do you want your pills now?” because we don’t want her to say no. But we can offer the pills with apple juice or water. By providing limited options we give information that can be acted on. If we just ask, “What do you want?” we will be no further ahead.

10.    Avoid confrontation

“I told you to meet me outside the post office.” “No you didn’t.” “Yes I did.” This is a conversation that is going nowhere. There will be no resolution to the argument. There will be two angry people. Projecting fault onto others is a defense mechanism all of us use. An object which has been misplaced, must have been stolen. We can protect ourselves when we can blame someone else. It is important that we do not enter the argument. Change the subject till the anxiety has lessened. It is possible to think more clearly when less anxious. Avoid having the last word.

11.    Use residual skills

An individual with a dementia such as Alzheimer’s disease is loosing the ability to perform past learned skills. We must recognize the skills that remain and provide opportunity to perform them. This way he will remain stimulated, involved and retain self respect. Activities of a repetitive nature are best because sequencing is often difficult.

12.    Reduce chance of failure

Learn the limits of her performance and attempt to secure an environment where he can function within those limits. Maybe she used to like to watch TV but now gets agitated when the commercials come on. Pre-recording programs with the commercials removed can lead to hours of enjoyment. We can use the memory loss to advantage by re-playing the same program at intervals. Indeed the familiarity often relaxes the individual whose memory loss makes her feel as if everything is new.

13.    Avoid sensory overload

A person with a cognitive impairment will often have difficulty interpreting the sights and sounds of the world around her. Too much sensory input will cause confusion, anxiety and fear. It is as if a fuse blows and there can be what is known as a catastrophic reaction. That is behaviour which, to us, is out of proportion to the events occurring. There may be displays of aggression, running away, shouting etc. It is often possible to recognize the signs of this building, but often we fail to see the warning signs. Often we do not realize the distracting stimuli present when we demand action. We may feel we do not have time to wait for him to calm down before proceeding. But time invested in preventing a catastrophic reaction will be well spent in the long term.

14.    Provide a calm familiar environment.

Maintain routines in daily schedules. Don’t make major changes like rearranging the furniture. If the individual has to be moved to a new setting, then take some familiar objects to be there when she arrives. When complex task are performed such as dressing and eating, ensure that distractions are minimal. If she must follow verbal instructions, ensure your voice is the one that will be noticed. Turn off the TV; close the door to others etc.

Caregivers, especially relatives, who have known an individual before the cognitive deficits changed him/her, have difficulty altering the way they relate. It is hard to break well-established habits. But the impaired person is in fact no longer the person from yesterday. The person before you now has new needs; severe limitations and can no longer live up to past expectations. It is the caregiver who must let the past go and learn to communicate on a new level. This cannot be achieved alone. All caregivers need emotional support. They must build around them a support system, a network of friends and professionals as they fulfill this difficult role.

By Sue Ellis 30 May, 2016

Reaching a diagnosis for many diseases takes a long time. Symptoms appear and there are tests. Symptoms are often denied by the individual or at first minimized by the professional. Symptoms may make past activity and work impossible causing great strain on family resources. In some situation changes in behaviour or memory are insidiously destroying relationships before they can be identified as symptoms of something being wrong.

This means that by the time the diagnosis has been made and the family is expected to get on with it, major rifts in its structure and solidarity have appeared. Indeed by the time the family is expected to “pull together,” family members may not be talking to each other; may feel let down, taken advantage of or abused by others.

When this is the reality, how can a family problem solve, decision make and deal with this situation? If this is your position it is imperative that you get professional help. Chances are you are so angry with what is going on that you are all taking it out on each other.

It takes a lot of work to cease from blaming, to stop finding fault. The dynamics are too complex and confusing to be handled alone. It is not a sign of weakness to need help at this time. It is a gift to find someone who will listen and not pass judgment, hear your pain without telling you what to do. This is indeed what every member of the family needs. Families function because of unique interdependencies, everyone has a specific role – bread winner, scapegoat to name just two. When disease hits, the security of this family web is torn apart. Everyone feels a tug of insecurity because that familiar role will be changed forever.

I remember Joe was the patriarch of the family. His word was law. His adult sons were still afraid of him and his wife just did what was expected of her. None dared step out of line. No one stood up to him. The family unit functioned successfully when it played by these rules. Joe was 69 when he started losing his memory, leaving the taps on in the bathroom, failing to dress himself properly and take care of his personal hygiene.

This family did not just have the stress of caring for someone with Alzheimer’s disease; they had to learn how to relate differently to him and to each other. All their roles in the family changed. The sons, who were now married with children of their own, could not support their mother because they were still holding fear for the man who now shuffled behind is wife everywhere she went.

It is often believed that the only person who is suffering is the person with the disease. The labeled person has the right to grieve and be angry because of the changes that have taken place. But everyone who has been in relationship with that person in the past will have to adjust to a change in their life. We generally deal with change by seeing it as a loss of what was. So we all must grieve.

No one who enters the care giving role does so without needing to grieve the loss of the past. The family unit has been changed and so it must grieve. If the family feels too stressed to talk it over together, or one is alone and has no family to share the grief with, then find a professional to hear the pain.

By Sue Ellis 30 May, 2016

When the diagnosis comes and roles have to change, a caregiver is needed and is assigned. When it is a parent who gets sick it is usually the daughter or daughter in law who must take up the responsibility.  A spouse is expected to care for a spouse.

With the changed role comes a changed life. The goals and dreams, the expectation of what was to come next, get dashed. When taking on the caregiver role, what were your plans for life? Were you looking to get promoted in your job, further your education, retire and start traveling, focus on bringing up the teenage children? Where indeed is your focus? All of a sudden the brakes are put on those aspirations and a new role appears – care giving. The dreams you had may have to be put on the back burner or shelved for life.

Shelved for life! That sends a shudder of reality down the spine. Suddenly the care giving role takes on a new appearance. Is it going to be the thing that stands in the way of what we thought we was going to become in life? Will we be able to achieve what we thought was our life’s purpose? The other painful reality is that we may have been putting off satisfying our needs, reaching our goals, for the sake of others. Their needs had to come first. But we always expected that one day was going to be our turn…

I may be adding a bit of drama here but not without justification. The caregiver will face an identity crisis when the extent of the new role becomes clear. There will be a reaction of anger, frustration and depression and an overwhelming sense of guilt at experiencing these feelings.

When this reality hit me I had a false sense of bravado. I expected that I would be able to cope, that I had the skills, that I was strong etc. This didn’t last long. It did not take long before the feelings of inadequacy and failure quickly flooded in. But they were feelings I was not easily able to share.

It was only after I had worked my way through accepting the changes that I could start to see what I had gained, not what I had lost. I could see that some parts of my life would have to be put on hold but I still had opportunities to have my needs met. I also started realizing that I was learning more about myself and whom I was, than I could have done any other way. I was learning from experience and was able to share that with others. Indeed my experiences were not wasted, they were of use. So often we hear of tragedies striking families and after it is over there has been a greater gift to humanity.

Just occasionally I was aware that there were gifts hidden in dark clouds. I learned about the strength and frailty of relationships. I learned about friendships and value systems. I began to understand myself more. But none of this could happen until I had stopped believing that this was all very bad timing. Once I had accepted the fact that this was my life journey playing itself out just the way it was supposed to be played, that I started growing.

By Sue Ellis 09 May, 2016

Posted by Nick Polizzi from  The Sacred Science

Here we are, in the beginning of yet another beautiful spring. Something is rumbling beneath the soil, a thing of beauty waiting to burst from its cocoon, a promise made long ago that is about to be kept. This is a ripe time of year to reshuffle the deck, shed skins of the past, and give yourself a fresh start.

Here are 5 sacred life practices that have been used throughout the sands of time to usher in the spring and flourish in its green glory.

1) The Art Of Letting Go (of unneeded stuff)

We’re literally talking about physical stuff here. Not mental or emotional baggage, but the stack of boxes in your closet or garage that contain god-knows-what that you’ve been keeping for god-knows-why.

Our clutter collections sometimes feel completely justified and harmless, but I assure you they take up more space in our psyche and energy field than we realize.

I invite you to slap some spiritual symbolism on these cardboard and plastic keepers of memory, and see them as physical manifestations of inner blocks, just waiting to be dissolved.

Crack open these containers, and figure out what you actually need, and what might be useful to someone else. I know it may seem like a thankless task, but I guarantee you will start to feel lighter as you begin to find a new home for these belongings.

The local thrift shop or the Salvation Army are your best buds in this department.

2) Spiritual Scrub A Dub

Yeah, we all know about the importance of spring cleaning, but how about doing it with full presence, as a meditative practice?

In ancient Aztec culture, the act of sweeping held far more meaning than just cleaning your floor. It was considered a sacred art that could affect future outcomes in the household, in commerce, and on the battlefield. Pretty neat huh?

Cleaning out your refrigerator can either be a cumbersome chore or a practice in purifying and clearing the energy of your kitchen – your choice. The meaning you attach to your motion dictates everything.

3) Rearrange Your Home For Fresh Perspective

You’ve probably heard of the ancient Chinese art of Feng shui – which is centered on the belief that invisible forces or Qi bind the universe and can be harnessed for our benefit through the conscious design of space.

It was and is applied to the building of sacred places like temples, tombs, and palaces, but is also a powerful tool for your household.

This can be as simple as realigning your couch and coffee table to create a flow between two doorways, or as involved as determining how your space orients toward the sun, moon, stars, nearby mountains or bodies of water.

4) Planting New Seeds

When was the last time you planted a seed and nurtured it to a fully realized adult plant?

For thousands of years, gardening has been seen as a deep spiritual practice. The act of caring for and observing new life as it springs forth from a simple seed holds many untold teachings for us. Almost all the herbalists I know speak of the inner awakenings they experience regularly in their work with plants.

For some, this is a fairly regular practice (and extra herbal bonus points to you!), but for many of us it is not. We trick ourselves into believing that our lives are too busy to set aside that extra 10 minutes a day to nurture our green friends.

You don’t need to move to the country to start planting new seeds of your own. Our leafy neighbors like light and clean water. Aside from maybe a few tender words each day, that’s about it. All you need is a flat surface by a window to start your own garden.

Yes, you can go out and buy pre-grown plants, but I promise there is something magical about growing your own.

5) Clearing The Air

There is something primordial within us that connects deep meaning to the invisible elemental sea that surrounds us. Many native cultures consider the air itself to be full of life-force and laden with power.

With this in mind, there are a multitude of methods you can use to purify, refresh, and activate the air in your home. Opening all the windows and doors for 20 – 30 minutes is a good start, but you can really spruce things up by burning certain herbs and resins, as well as diffusing the right essential oils in your space.

Some herbs/resins we burn in our home are – Palo Santo, white sage and Copal. You can use a simple bowl, or purchase a more ceremonial vessel like an abalone shell. I like to guide the aromatic smoke into different areas of the room using my hand but if you’re called to use a feather or other fanning device, the possibilities are endless.

In terms of diffusing essential oils, we just purchased a pretty inexpensive diffuser and it works beautifully. Simply fill the diffuser with purified water and squeeze a few drops of your favorite essential oil(s) on top (we use cedar, eucalyptus, and lavender). Turn the diffuser on and enjoy the healing vapors.

I hope these 5 sacred practices serve you well as we walk toward the warmer months. These portals to our ancestral past each hold their own healing wisdom, just waiting to be unlocked.

Stay curious,

Nick Polizzi

Director,  The Sacred Science

By Sue Ellis 09 May, 2016

By Susan M Ellis

“We Are One with humanity and all of life. Business and all institutions of the human community are integral parts of a single reality — interrelated, interconnected and interdependent.”

from the   Conscious Business Declaration

We are encouraged to live in a selfish world of individuality where my needs, my profits, my desires are more important that my relationship to the whole. Such behaviour is destroying us.

But in my spiritual practice I embrace a oneness with all things. I see myself in an interconnected universe where all actions will have an impact on the whole. This means I react when I know the bees are dying partly because of man-made chemicals; when water, which should be a human right for all, is bottled in areas where drought conditions exist and the water is only sold back to those who can afford to buy it. I cringe when corporations sue countries for not allowing their poisonous product to be sold or prohibits them from raping the country of its minerals or forests.

According to a Statistics Canada survey, there are at least 850,000 people diagnosed with environmental sensitivities in Canada. This number went up by a whopping 34 per cent from 2005 to 2010. Such people can no longer enjoy living in the world we have created, often have difficulty finding jobs, housing and medical care. Imagine not being able to enter a hospital or doctors office because you cannot tolerate the chemicals in the air? We have created a toxic world.

To restore my spirit I go to the annual Green Living Show in Toronto and learn about companies selling products and communities working together promoting sustainability, natural and organic products, lessening our carbon footprint and saving what we have.

Joy was added recently when I read about a movement encouraging businesses to learn more about being conscious corporate citizens. They have created a Conscious Business Declaration and those who sign, vow to adhere to these principles.

from their website I learned -

A New Standard for Business in the 21st Century

The Conscious Business Declaration articulates essential principles that we believe will dramatically increase economic prosperity while healing the environment and improving human wellbeing. The Declaration aims to define a new standard for Business in the 21st century, one that will enable Business to become the most powerful engine on Earth for creating abundance and flourishing for humanity and all life on Earth.    

A Radical Shift in Perspective    

The Declaration calls for radical shift in perspective for Business globally, one that is already shared by humanity’s leading spiritual traditions and validated by modern science. It is expressed in the first principle of the Declaration: “We Are One with humanity and all of life. Business and all institutions of the human community are integral parts of a single reality — interrelated, interconnected and interdependent.”

So here is the   Conscious Business Declaration .   Feel hopeful. Pass it on. Know that profit can be made without destroying something to get it.

As a global community of business leaders we are committed to developing the awareness and skills needed to consciously evolve our organizations in alignment with these principles:

  • We Are One with humanity and all of life.  Business and all institutions of the human community are integral parts of a single reality — interrelated, interconnected and interdependent.
  • In line with this reality, the purpose of Business is to increase economic prosperity while contributing to a healthy environment and improving human wellbeing.
  • Business must go beyond sustainability and the philosophy of “do no harm” to restoring the self-renewing integrity of the Earth.
  • Business must operate with economic, social, and ecological transparency.
  • Business must behave as a positive and proactive member of the local and global communities in which it operates.
  • Business that sees, honors, and celebrates the essential interconnected nature of all human beings and all life maximizes human potential and helps create a world that works for all.
  • When aligned with Oneness, Business is the most powerful engine on Earth for creating prosperity and flourishing for all.
By Sue Ellis 09 May, 2016

In recent years attitudes towards care giving have changed. One sees more media coverage of the subject and a growing industry for those offering fee for service. There is a great deal of “taking care of,” but not so much “providing support for” the emotional strains of care giving. In my video Aspects of Hope   I talk at length about why some people should not be caregivers. I should add, not before dealing with some of their issues.

On my website is an article entitled   “Why some people should not be caregivers.”   The example is of someone who had no role models of people caring while growing up . The article ends with –

“This is not to say that all those who experienced abusive childhoods will behave the same way when they grow up. But it is worth noting that family behaviour does repeat itself. It is essential that we are aware of our own attitudes towards disability, disease, and giving care. It is important that we recognize our true feelings towards our parents or for whom ever it is that we may be asked to give care. Sometimes it is safer to back away from the responsibility, delegating to others. It is essential we seek professional help be it through counseling or by attending a support group. We must never buy into the belief system that all people can be care givers. It is a learned skill.

Many of us fail to accept that we must acquire the skills, believing we are failures when faced by the first problem. Few of us anticipate ahead of time that we might be caring for another and fail to prepare ourselves with knowledge. We often believe we must go it alone and asking for help is a sign of weakness. In hindsight we may believe we could have done things differently, but we must remember that at the time, we did the best we could.

Face your attitudes and beliefs with honesty and then make appropriate choices when faced with the responsibility of being a caregiver.”

For many years my mother cared for my father who had a progressive dementia. It was at a time in Britain where you “did not air your dirty clothes on the line.” This was your secret and “your cross to bear.” I was living in Canada and working with those with Alzheimer’s disease. I knew this societal attitude was not good for her. Aghast, she heard me blurt it out to her friends. How supportive they became, sharing their own hidden secrets too, but bearing witness to each other.

Recently I was excited to hear about a group of friends in a small community in California who had decided to be proactive. All were aging and all had partners who now, or in the near future, would need care. They were not going to travel on this road alone. This is what I learned from one of the group’s members.

We started out from a discussion group last spring and summer of the book “Being Mortal, Medicine and What Matters in the End” by Atul Gawande.   Website    We were not a book club, we came together over this book and its subject matter. That group met six times and built a lot of trust and camaraderie discussing the shortcomings of American health care for the aging. We were all most concerned about the tendency to over-operate or medicate and rely on modern medicine when sometimes it is better just to die. We were all committed to aging in our homes not in assisted living. Several spoke openly about believing in assisted suicide. That group included husbands, wives, partners, etc.

The group, which we have called “Heart Connections” is now of eight women. (The men tired of talking about this)!! Seven of the eight had done water aerobics together for years, but at that time did not have this current level of intimacy. I am the odd one who is grateful to have known these women and been invited to join them. We struggled for many months after the discussion group ended with the idea from the book about the “Village Network” concept.

(You can Google for more information such as at   Village to Village Network   in the US).

We decided setting up a non-profit was too much work and did not provide the intimacy we wanted.

It is only in the past couple of months that everything has started to gel. Many of our meetings were group gropes with ideas. We range from 67-86 years old with partners ranging from 67 to 94 years old. Only one has serious medical issues, needs help dressing and has lots of pain. The rest are healthy and active. Most of us have family but not close by and we are looking for nearby support as we age. We see these needs as help with meals, rides to doctors, checking up on each other, sharing resource information, etc.

We meet every three weeks for two hours. We have developed an agenda and meeting format to keep it simple. We rotate hosting, moderating, etc. We also have a time keeper and call time out when someone rambles on too long (women do that)!! We meet in each others’ homes. Those who cannot host (house too small, husband in the middle of the living room, etc) provide “simple” snacks.

We invited two to join and learned right away that it is important to first be sure new members can meet during our established meeting time. It is a nightmare to keep changing meeting times to accommodate everyone. It is every three weeks, Monday 3-5 pm. If someone is not free to commit to that, they should not participate. 8 in the group works well, but we are weighing if we should add a couple more.

We started out with three forms for everyone to complete. What will you “give” to the group? What do you need to “take” from the group? Your emergency contacts and medical background information. That is where we are right now. Our last meeting really got into how do we develop a good system to help each other contact family and friends when there is a medical emergency.

We are all grateful we do not need a lot of help yet. We are also a bit apprehensive about how much help we can actually be to each other. I do not think anyone is going to move in and be someone else’s caretaker. But we are gaining a closeness which makes us feel less alone, particularly me. I am newly retired. Though we have lived here five years, I did not have a strong social network. These women make me feel like I could leave my husband alone for a trip to visit my sister, out of state, and someone would check in on him. It is also making him feel more comfortable as he sees this friendship network developing. And my husband is pleased to know he is not the oldest, there is another husband who is 94!

We intend to share this idea with others here in town once we are sure we have something that works. So people don’t have to keep reinventing the wheel, we have decided we need simple documents, formats and procedures to share. Like a franchise or a 12 step meeting you know what to expect when procedures are standardized. Some of us prefer this structure, some are more hesitant about it. We will see if it survives over the coming months.

So this is where we have reached in this journey, and we are pleased to share.

Draft Declaration of Dependence

Heart Connections

Core Belief

One of the marvelous things about community is that it enables us to welcome and help people in a way we couldn’t as individuals. When we pool our strength and share the work and responsibility, we can welcome many people, even those in deep distress.

Jean Vanier

Guiding Principles (Needs and Concerns)

Aging in Place is our core desire as we move forward in our life journey. In our small group setting we are seeking to:

  • Develop Trust and Commitment to One Another
  • Develop the Ability to Ask for Help
  • Keep Confidentiality
  • Build Community

New Members must be able to meet on Mondays from 3-5 p.m. and understand the level of commitment required of the group.

We aspire to develop a model to share with others who desire to start a group on aging in place.

Rules of Order (Meeting Structure)

Each meeting should start on time. (If you arrive late enter quietly AND without interruption).

Each member will have an opportunity to speak for 3 minutes during “What’s on Top”. There is no crosstalk during this part of the meeting. It is the time for general sharing and asking for needed assistance from the group. If you would like to be of assistance, gesture with a thumbs-up and meet after the meeting to discuss the specifics.

If someone wants additional support, she can ask for additional time after all have shared during ‘What’s on Top.’ Group will decide then whether to extend time.

A time-out sign is given if someone goes off topic during meeting time.

At the conclusion of our meeting the group holds hands and recite: “Aging in Place with Love and Grace”.

Agenda Format

Read the Core Belief, Guiding Principles and Rules of Order

Share “What’s on Top” (go around the room)

Share where we are on “Getting our Affairs Together” (go around the room)

Attend to Agenda Items

Identify Homework when Applicable

Identify next meetings Agenda Items

Share New Information and Reminders (go around the room)

Identify specific tasks for each member for next meeting

Conclude the meeting


Rotate Moderator/Agenda Preparation/Reminder E-Mails

Rotate Timekeeper/Tinkerbelle

Rotate Hostess who is responsible for snacks

Update Excel File

Note taking is optional


Heart Connections Proposed Agenda   Date: April 11,   2016

Read the Core Belief, Guiding Principles and Rules of Order

Share “What’s on Top”

Agenda Items:

  1. Approve Revised Declaration of Dependence
  2. Do we want to use the group process for “Getting Our Affairs in Order”?
  3. Review Emergency Contacts for changes and additional questions
  4. Identify who has Durable Power of Attorney for Healthcare
  5. Identify who can pay the bills if you are incapacitated
  6. Identify Key Person for Family Network
  7. Identify Key Person for Friends Network
  8. Discuss Groups Direction and Membership

Identify Homework when Applicable

Review Medical Data and Takes for changes and additional questions

Identify Agenda Items for Future Meetings:

Review Basic Data

Medical Data and Takes

Advanced Directives and Legal Documents: Attorney who prepared will/trust and date

Judy on Hospice

Share New Information and Reminders

Carol’s place can be our default meeting location, with as much notice as possible

Group data will be kept paper based and redistributed when updates make it necessary

Kathy offered to accompany people to critical medical appointments to assist with clarification questions and recording.

Identify tasks for each member for next meeting

Agenda Preparers/Email Reminders/Moderators



Conclude the meeting by holding hands and reciting “Aging in Place with Love and Grace”.

By Sue Ellis 06 May, 2016

When the care giving role has finished, the individual usually experiences a loss of identity. Here are ten ways of transitioning successfully from being a caregiver to creating a new life.

“Now you can get on with your life” are the words of comfort we hear when our role as caregiver is over. The depression that we sink into, and others cannot fathom, is grief for ourselves. Others will attempt to help us get over the grief for the person lost from our life but will fail to realize that it is the loss of self for which we grieve later. Indeed we don’t realize this for ourselves at the time. Since we have spent a long time putting the needs of another first, we fail to understand how much of self-identification was tied up in those needs.

I was a caregiver for almost 10 years. Grief followed my partner’s death. But my “depression” did not hit till 18 months later. It was a period of transition – from one self to the next. From one identity, one image of self – to a new me. The transition has a big question mark at the beginning. “What am I going to do with the rest of my life?” “Who am I, anyway?” The journey is that of our own transformation.

How do we successfully transition?

1.   Recognize that this is the task at hand.
2.   Re-evaluate the role that we have played and now lost. This means look at it as if we were writing a job description. We do not need to dwell on criticizing how successfully we performed, but focus on what skills we acquired, what tasks we accomplished, what creativity we showed. Society does not place value on the role we have played. We must not fall into the trap of belittling our own accomplishments. We must familiarize ourselves with whom we have become because of this experience. We have been forever changed.
3.   Recognize that over time we searched for recognition in the role we played. To do it well, the caregiver role became us. It was how we identified ourselves. Others related to us through that role. Any socializing we had was a respite from that role. Any emotional support we received was to help us cope with that role. Most of our conversation was about the talk of care giving. Then it is over and all the professionals who shared the challenge have disappeared. We are not supposed to need them any more. But they were the people who validated who we were. All those routines that had become our life – the doctor visits, the care giver support groups, the volunteers – have all gone. Suddenly we are naked. We have no identity and we are alone. The task at hand is to build a new identity.
4.   Don’t deny the pain, look at the fears, and accept the feelings for what they are. We are learning how to face change. We are learning how to let go of the past – of whom we were, of what was. We are in a transition where there is no going back. A time when this moment truly is the most important of our life. For it is the only moment that is real. The only moment that counts. How we live it will determine what is ahead of us.
5.   Find a mentor who has been there. If no one is available chose someone who is prepared to listen without thinking they must solve problems. Only you can forge the future path. It must come from within you, not the suggestions of others. The gift others can give you now is the ear that witnesses your progress. Their only task is to stop you from dwelling on negative repetition. We used to call this being a “broken record.” Sometimes we used to imitate playing on an imaginary violin to indicate the repetitive telling of a sad story. We do not make changes when we are repeating the same old story over and over again.
6.   Slowly open new doors and test how you feel. My breakthrough came when I started reading books on spirituality and healing. I will list a few that have impacted my life and caused me to shift my views, beliefs and attitudes. They moved me from being a victim of my circumstance to being the captain of my ship. This is not a complete list but examples of books that helped me look at the world, life and me in a different way. They helped the change process.

Anatomy of the Spirit / Why People Don’t Heal and How They Can – Caroline Myss
When Things Fall Apart – Pema Chödron
The Four Agreements – Don Miguel Ruiz
My Grandfather’s Blessings – Rachel Naomi Remen MD
Home with God – Neale Donald Walsch
Man’s Search for Meaning – Viktor E. Frankel

7.   Let go of self restricting beliefs and attitudes about yourself and your future. “Poor me,” “my life is over,” “I shall never be able to…” – they will not serve you well. They are a devise to stifle facing change. If we see our cup as half empty – it will remain so. If we see that same cup as half full then there is room for more. When we believe in “can’t,” then that is what we will experience.
8.   Let go of the need to make yesterday a living presence today. Instead use the knowledge gained yesterday to make today more successful. The brain cannot distinguish between what is happening now and what you are remembering from the past. To remember the pain of the past is to bring it back to make it real – a conscious decision. The brain can’t tell the difference. The brain can only bring into awareness one thing at a time. Again, you choose what you focus on.
9.   If you experience real difficulty focusing on the now, finding it so much easier to retreat into the past, we must develop rituals to stay present. Going for a walk and consciously focusing on everything we see is a helpful exercise. Quickly we realize how much we are missing when our thoughts are not here. Actively listen to the conversations of others. Don’t concentrate on how you can segue conversation to go back in time with you. In conversations with others, discipline yourself to only talk about new information, not stuff they have heard before. This is a powerful exercise because it forces you to bring newness into your life – what you saw on your walk, the book you have just read, the TV program, the baking you have tried, today’s weather, sports teams etc. Now you are creating new life, not regurgitating the past.
10.   Gradually the new you will emerge with new dreams and aspirations. They may have to be adapted to fit the budget or the limits of increased age, but we are no longer letting the budget or our age be the excuse for not doing something.
11.   To be a caregiver is a gift. Often a painful one that we were unprepared for, but the new butterfly that emerges from our transitional cocoon could never have seen life if we had not met the challenge.

The person I am today, ten years after my care giving ended, is not the person I would have become without the experience. I am filled with gratitude and know I have become the person I was supposed to be in this life.

By Sue Ellis 06 May, 2016

By Barbara McDowall of

Just back from almost 2 weeks in my favourite part of the country, kind of my spiritual home away from home – Canada’s east coast and PEI in particular. When I spend any time along our Atlantic seaboard (Nova Scotia in particular), I invariably find myself asking “How can I live and work here”? And I feel I am getting closer to having an answer to that question.

Along the way to PEI, I happened to notice one of the ubiquitous roadside signs. This one said PEACE BEGINS AT HOME. It got me thinking about what that meant to me. Personally, I had to ask myself how peaceful was I within myself (my home), so to speak?   Based on my level of personal peace, what was the impact of me being peaceful on the world around me? To paraphrase Forrest Gump, “peaceful is as peaceful does.”

With that awareness how can I then make a positive contribution to world peace through intentionally and consciously becoming more peaceful within myself? What would I need to change about me to make that happen?

To change or improve any habit or skill most often requires some kind of unlearning/relearning or training regimen. With that in mind, what regular program or practice will help me shift my focus to peace within. What works best for me is a regular practice of daily meditation of no less than 30 minutes first thing in the morning and 30 minutes at the end of my day. Frequent affirmations such as “I am a peaceful person and I bring peace to the world” are helpful in reminding me who I am and wish to become more of.

Gandhi said it so well many years ago – be the change you wish to see in the world. If I wish to see peace in the world, I must be grounded in peace, to the point that should I meet someone who doesn’t speak my language, it is clear I am grounded in peace because I am that person in the world – they can see it in action.

Peace is not something that can be imposed externally. World peace will become a more probable reality every time one or more of us intentionally and consciously choose to be peace in the world. Thankfully, this energy is an ever-increasing part of our world today. Witness the prominence of Eastern philosophies which support personal awareness, personal responsibility as essential components to creating an aware and responsible world with a commitment to ending judgment and shame.

Buddhism continues to offer me the opportunity to love myself, to love others, and to love my enemies. It offers the compassionate lens to our common “suffering” and our ability to look at ourselves as microcosms of the world. If we can be honest with ourselves, fully loving and approving of ourselves, our innately compassionate hearts become engaged in this life, as we open up to our commonality and our shared wish for a better life for ourselves, for our children and for our beloved planet.

I am grateful for that roadside billboard and for its reminder of one of many truths – as within, so without.

Barbara McDowall is a spiritual teacher, mentor, doula for the dying and celebrant (weddings, baptisms, celebrations of life). Located in Toronto, Canada, she is available for consultation by phone or in person. For more information, and visit

By Sue Ellis 06 May, 2016

Written by: Jenn Weesies

Each February everyone puts a lot of effort into demonstrating their feelings towards their loved ones. They make or buy gifts, plan special excursions and recommit their lives to each other. They act in such a way that makes their special someone feel loved, cared for and cherished. Some people though, will argue that this demonstration of affection toward loved ones shouldn’t just occur during February but should happen all year long as well. Caregivers and family members of people experiencing incontinence are constantly striving to provide the best care for their loved ones to demonstrate their affection. However, as many know, caring for their loved one’s unique incontinence situation can be difficult.Incontinence is not uncommon. Urinary incontinence affects more than 200 million people worldwide and nearly 25 million American adults are currently experiencing temporary or chronic urinary incontinence. According to the National Association for Incontinence (NAFC), incontinence characteristically affects more women than men. In fact, one out of four women and one out of eight men experience incontinence.

Enhancing the quality of care you are providing your loved ones experiencing incontinence means improving the quality of control with the right products and right fit at the best price. Here are three ways that can help you demonstrate your affection towards your loved ones experiencing incontinence by ramping up the quality of your care.

1. Buy hospital grade incontinence care products to keep your loved one comfortable. Hospital grade incontinence care products are far superior to the products that you can buy at a local superstore. These products are better quality and can increase your assurance in managing your loved one’s incontinence. They provide the highest level of protection, superior odor protection, the best fit, and the latest technology to quickly draw wetness caused by urinary incontinence away from your loved one’s body. With hospital grade products you can be sure that your loved one will remain dry and comfortable all day long.

2. Buy from a knowledgeable home health care center or medical equipment supply company. Highly regarded home health care centers and medical equipment supply companies focus on ongoing personalized management for your loved one’s unique urinary incontinence situation. They can provide personal support over the phone, online and in the store to find the best incontinence care products for your loved one. Briefs, protective underwear, pads and liners are available in gender specific fits and an array of sizes and protection levels. Home health care centers and medical equipment supply companies can offer insight to customize incontinence care products for your loved one. They can also recommend products that are easy to get on and to change, improving the ease of care. Their knowledge can enhance quality of life for individuals dealing with incontinence and can help caregivers and families provide more supportive care.

3. Enroll in a home delivery program to save money and time. Experienced home health care centers and medical equipment supply companies can connect you with money and time saving options that other stores cannot. The best offer discreet home delivery programs that can supply caregivers and family members with the convenience of on-time supplies at their doorstep with a range of cost effective savings plans. These programs allow you to order the highest quality products in bulk. After all, buying and ordering incontinence care products should not have to take precious time away from spending moments with your loved ones.

Demonstrate your feelings towards your loved one experiencing incontinence all year long through providing them the best care and incontinence care products possible. Seek the help from a knowledgeable home health care center or medical equipment supply company. They have resources and support staff dedicated to making your job easier and your loved ones happy and comfortable.

About the Author Binson’s Home Health Care Centers began in Center Line, Mich. and has grown to the home health care center it is today. Currently, there are centers in Michigan and Florida. For more information about incontinence products and programs call Binson’s at 888-246-7667 or visit:

article from Content Crooner

By Sue Ellis 06 May, 2016
A habit is a constant, often unconscious inclination to perform some act, acquired through its frequent repetition. If the habit is objectionable, we call it a “bad habit”.
It’s possible to control your habits and make a positive change in as little as 30 days. Focus on one habit at a time.
Caregiving bad habits often lead to increased stress and sometimes, even to elder abuse.
Elder abuse often starts as psychological abuse. If a caregiver doesn’t properly deal with her/his stress, they may start to wreak havoc by means of threats, fear, humiliation, fear, manipulation, or other bad conduct. This may include frequent harassment, criticizing, insults, or denigration.
It is important to be aware of any signs that you may be heading in the wrong direction.
Some of the signs include:

1. Trying to do too much, resulting in not getting anything done
2. Doing the wrong thing, regularly
3. Procrastination, everyday
4. Having no clear cut goals
5. Improper or no planning
6. Not completing tasks
7. Negative self talk
8. Guilt trips
9. Lax hand washing
10. Holding in, or offering no support
11. Smoking
12. Drinking too much
13. Junk food, poor diet
14. Emotional eating
15. Too much caffeine
16. Compulsive spending
17. No time off
18. Sleep deprived
19. Constant bad temper
20. Can’t or won’t delegate
21. Disorganized
22. Holding breath
23. Can’t prioritize
24. Time management problems
25. Can’t make a decision

Take an honest inventory of yourself. Make it a point to correct those bad habits. Habits are a matter of self-control. When you break bad habits you will be much more successful.

Here are 15 ways to reduce or diffuse stress which will, in turn, help alleviate bad habits.

1. Be honest about your bad habits and stress level.
2. Give your care-receiver a hug every day.
3. Do something nice for yourself each week.
4. Remember to breathe deeply.
5. Take a few minutes each morning to repeat an affirmation or focus on calmness.
6. Take at least a 20 minute brisk walk every day.
7. Choose 1-2 people to whom you can vent your frustrations. You need a good listener.
8. Choose to be happy.
9. Before you go to bed each night, review your day, and let go of the bad stuff.
10. Relax with a cup of tea.
11. Listen to your favorite music to relax.
12. Count your blessings
13. Be assertive with a smile on your face.
14. Keep a journal.
15. Try aromatherapy. Spritz some lavender on your pillow.

Being a caregiver is one of the most difficult jobs you can ever have. It is important to take good care of yourself so you can take good care of the care-receiver. It becomes even more critical the longer you are a caregiver. Put the odds in your favor and keep those habits in check.

Author Resource:- Rebecca Colmer is an Eldercare Advocate, Author, Speaker, Publisher, and Caregiver Expert. You can find   books published by the author.
By Sue Ellis 06 May, 2016

By: Rebecca Sharp Colmer

The caregiver role is complex and differs for everyone depending on the needs of the care-receiver.Many times, in the beginning, there may only be a few needs, such as providing transportation or helping with shopping or cooking.

Over time, needs increase, requiring additional services, until the care-receiver is fully dependent on the caregiver.Here are some tips to help you get started:

1. Every caregiver should know as much as possible about the care-receiver.You should know their characteristics and personality style. For example, you should know their likes, dislikes, family members, ailments, etc.

You should know if the care-receiver is outgoing or reserved, task-oriented or people-oriented. Once you get to know them better you will be able to understand their needs and behavior patterns.

2. Every caregiver should know and understand his/her responsibilities, duties, and tasks.As a caregiver, you have a responsibility to be sensitive to the needs of the care-receiver, and to find a way to satisfy their needs.

This may require you to enlist the help of others. The duties of the caregiver usually change and increase over a period of time. Set up and follow a care plan.

Recording essential daily information will assist everyone on the Care Team. It also allows another caregiver to take your place fairly easily.

3. Stay updated on the health condition of the care-receiver.

As the health of the elder deteriorates and more needs start to surface, it is important for the caregiver to find out how to cope with them.

Keep a log of his/her daily activities (medicine taken, food intake, sleep habits, temperament, etc.) so that you will always have a snapshot view of their current health.This information will help the doctor get a more complete picture of the condition of the care-receiver.

4. Assist as little as possible in tasks the senior can usually handle himself/herself. Just as it is not easy being a caregiver, it is not always easy being a care-receiver.

The gradual loss of independence and control over just about everything is difficult to accept. Remember, seniors have the right to their dignity and pride.

5. Caregivers should express warmth and concern towards the welfare of the care-receiver.

If the care-receiver has a poor self image or feelings of inferiority, the caregiver may have to provide reassurance while ignoring negative behavior.

A caregiver must have patience (and stamina) for change in moods.

6. Be a good listener. Many times seniors may simply want you to listen.They want to share their stories. Caregivers must be careful to avoid put downs and choosing sides.

Pay attention and be able to connect the dots between past, present, and future. Listen intuitively or use your sixth sense to hear underlying messages.

7. Smile a lot. Be a good friend and companion. Be as positive as possible.

8. When friends and family neglect to call or visit, do not hesitate to remind them.

9. Ask for help. Advocate for what you need. Sharing the care of a loved-one benefits everyone.

10. Maintain your self-composure and avoid stress. Elder abuse can occur as a result of caregiver stress.

It is imperative that you are aware of and deal with stress.

Author Resource:- Rebecca Colmer is an elder Care Advocate, Author, Speaker, Publisher, and Caregiver. You can find more caregiving tools and resources at her website:
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