Caregiver Journey

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

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 Aug, 2015

I am drawn at this time to talk about the topic that no caregiver really wants to think about – their feelings of guilt and regret. They surface the more often that we hear people praising us for what we do; when people say they couldn’t do what we do. I remember during my years of care giving, I could not just say thank you and accept that the other person didn’t understand. I felt I had to make them understand, that they were wrong, that I was not the paragon of virtue they somehow saw.

I talk about the subject in my  video Aspect of Hope . I talk about the behaviors and rituals that I embarked on while Sue was still alive, so that I would not have guilt and regrets after my role was complete. I didn’t know if my rituals had any impact on the future, they just felt worthwhile at the time.

When my care giving days were over I was filled with regrets, and guilt. I vowed I would do better next time if there was a next time. There was. A close friend needed palliative care and wanted to die at home. I organized a volunteer roster and did all that I felt was expected of me for those 5 weeks. But maybe I had done less. Oh dear, there I was again, filled with guilt and regrets after she died.

So what is this all about? Yes it is about the grief process. It is very much about no second chances to get it right, no being able to redo something. When it is over, it is over. In essence it is about expectations. As caregivers we believe we are not expecting too much of ourselves. However misguided we  know , deep inside, that everyone is expecting more. As a caregiver I went to bed trying to convince myself that I had done the best I could. The trouble was I was fooling myself. I did not believe that. My other voice was there criticizing me.

Was there someone to whom I could have turned? Could I have shared those feelings with a sounding board so I could have really convinced myself that I was doing the best I could? The reality is that at any given moment we only have the strength, skills, emotional power, decision making ability – that that moment will provide. A week later we may have more skills, have had more sleep, feel more confident and at that time be in a position to do a better job. At that time. That is the secret. We can not compare different days, situations, processes and outcomes. Each is unique.

There is another reality. Sometimes we do  not  do our best. It is not a case that our best was too little. It is that we purposely gave too little. Then we must live with the consequences. Why would we give less than we were able? Anger, hurt, frustration, lack of being appreciated, distraction or divided loyalties could well get in the way of us giving our all to the care giving role.

Success in being a caregiver comes from understanding our vulnerability, accepting it, loving ourselves because of it and most importantly, not hiding it. Only then can we move forward, living through our mistakes, acknowledging our flaws and understanding that perfection is impossible. Having a trusted person to share that journey with is invaluable. But they can not convince us that we are doing our best or support us when we are not giving our all. We alone can give ourselves permission to feel accomplished. We alone must ask for help when the task is temporarily beyond us.

Success in being a caregiver comes from understanding the progress we are making. Care giving is not about outcomes, it is about beautiful process or the meaningful journey. So often in my work life with the elderly the outcome was either placement in an institution or death. My skills were used to create a beautiful process or a meaningful journey. The outcome that was statistically measurable was not important to me.

What we must do is learn from the past so we hone our skills. But there is no graduation. We only graduate when we believe we have.

The years role by. My ensuing life experience makes me know that if I am in the caregiver role again, my expectations of myself will be higher. Me being me, I will still have regrets when it is over. But the guilt is a self inflicted punishment I can live without. I have learned to let that go. Perhaps for me, the words of a Jacques Revaux, Claude Francois, Gilles Thibaut and Paul Anka song made famous by Frank Sinatra say it best.

Regrets, I’ve had a few

But then again, too few to mention

I did what I had to do

And saw it through without exemption


I planned each charted course

Each careful step along the byway

And more, much more than this

I did it my way
From  Frank Sinatra – My Way Lyrics | MetroLyrics


By  Sue Ellis |August 6th, 2015| Caregiver Journey | 0 Comments
By Sue Ellis 22 Nov, 2012

When creating websites and writing blogs one often wonders “is there anyone out there?” On the first edition of my website in March 2010, I wrote a blog on this issue.

This week I was rewarded by a delightful letter from Morro Bay, California. Here is that letter –

“My name is Camden and I am a 22 year old female college student who has been in the past and will be at some point in the future, a caregiver for my grandparents who raised me. I know that care giving is part of my spiritual path as it allows me to show my grandparents the love, respect, work, and patience that they afforded me as a child. I just wanted to drop you a line and give a sincere thank you for this website as I know it’s resources will help me transition through these experiences with open eyes and an open heart.”

When care giving comes freely and with desire it has to be a growth experience. Giving from the heart expands our whole being. When resentment creeps into the care giving, the entire energy pattern changes. Indeed it is not good for our health.

I have written before about how the presence of a negative attitude impacts on the care giver role. Let me focus here on the impact of positive energy when care giving. Many wise people have talked about the value of service to not only the individual, but to the world.

It seems to me that when I had time to give to my care giving I enjoyed the role; I relaxed into it embracing the physical contact and meaningful communication. It was easy to be patient and I was stimulated by creative problem solving.  But when I was rushed, juggling responsibilities, and when tired, the role became less of a healthy challenge and more of a stress filled burden. So we need to learn time management, acquire the ability to ask for help and get plenty of sleep so that giving of ourselves does not drain us.

I hope caregivers, and potential care givers, take time to read the following quotations. Apply them to your own lives; absorb the importance of the role that you play. Many shortsightedly believe that care giving is a waste of time; time which should be used to fulfill more lofty ideals. Indeed our society reinforces that outlook. But rest assured we can switch around our attitude to the task and know that the challenge is ours to accept and from which to grow.

Enjoy these words of wisdom.

Norman Cousins -  If something comes to life in others because of you, then you have made an approach to immortality . Mahatma Gandhi  The fragrance always remains on the hand that gives the rose.

Mahatma Gandhi -  The best way to find yourself is to lose yourself in the service of others. 

Anthony Robbins  -  Only those who have learned the power of sincere and selfless contribution, experience life’s deepest joy: true fulfillment.

John Wooden -  You can’t live a perfect day without doing something for someone who will never be able to repay you .

Elbert Hubbard (1856 – 1915) US author -  All success consists in this: You are doing something for somebody – benefiting humanity – and the feeling of success comes from the consciousness of this.

Emily Dickinson -  If I can stop one heart from breaking, I shall not live in vain;  If I can ease one life the aching, Or cool one pain, Or help one fainting robin Up to his nest again, I shall not live in vain.

Albert Einstein -  Only a life lived for others is a life worthwhile.

Albert Schweitzer -  I don’t know what your destiny will be, but one thing I do know: the only ones among you who will be really happy are those who have sought and found how to serve.

Eleanor Roosevelt -  When will our consciences grow so tender that we will act to prevent human misery rather than avenge it?

Felix Adler -  To care for anyone else enough to make their problems one’s own, is ever the beginning of one’s real ethical development .

Herman Melville -  We cannot live for ourselves alone. Our lives are connected by a thousand invisible threads, and along these sympathetic fibres, our actions run as causes and return to us as results.

Ralph Waldo Emerson, -  It is one of the most beautiful compensations of life that no man can sincerely try to help another without helping himself.

Woodrow Wilson -  If you will think about what you ought to do for other people, your character will take care of itself. Character is a by-product, and any man who devotes himself to its cultivation in his own case will become a selfish prig.

Helen Keller -  Happiness cannot come from without. It must come from within. It is not what we see and touch or that which others do for us which makes us happy; it is that which we think and feel and do, first for the other fellow and then for ourselves.

Muhammad Ali -  Service to others is the rent you pay for your room here on earth .  

Oprah Winfrey (1954 – ) O Magazine, September 2002

I’ve come to believe that each of us has a personal calling that’s as unique as a fingerprint – and that the best way to succeed is to discover what you love and then find a way to offer it to others in the form of service, working hard, and also allowing the energy of the universe to lead you.

 Lateef Warnick – source: “One Source of Universal Love”

- The greatest life one can have is of service. Give joy, happiness, bliss, laughter, wisdom, prosperity, love & light to others. By doing so, you tap into the Infinite Source within ensuring that you will never have to do without these “treasures” yourself!

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