WORDS OF WISDOM

Today I came across this old article written by Nina Lamparski in the Wentworth Courier, 21st March 2007

Counsellor Jane Gillespie’s book “Journey to Me” openly talks about her battle with cancer.

Author Jane Gillespie had just finished her chemotherapy when she decided to run away. “I’d bottled up all my feelings about having cancer and once the treatment ended I suffered a breakdown,” she explained. “I just had to pack up and leave.”

The Canberra mother of three had been diagnosed with a malignant lump in her breast in 1994, a “harrowing experience” that would turn her “whole world upside-down” & push her to flee to Sydney.

In the autobiographical Journey to Me, to be published on 24th March 2007, Ms Gillespie recounts how the pressure to shield those close to her from the emotional trauma became impossible. “Cancer is not just a physical illness,” she said. “It literally eats you up from the inside. You feel like you can’t share it with your family and friends. You want to protect them and not burden them even more. Eventually I couldn’t stand this anymore.”

But her impromptu move interstate did not provide the relief Ms Gillespie had hoped for. “I thought I could leave the past behind and yet it followed me. Imagine my shock when I discovered I’d brought myself with me.”

In the end, “I believe it was joining a Life Force Cancer Foundation support group that saved my life”, Ms Gillespie said. The not-for-profit organisation, which has support groups in the Eastern Suburbs and Inner West, helps cancer survivors deal with the emotional aftermath of their illness. There is also a separate Inner West group for carers.

Ms Gillespie, who now works as a Life Force counsellor, said she hoped her book would fulfill a similar role.

“I really want people to understand that there’s life after cancer but also that it’s okay to be down and feel negative at times,” she said. “Being open about what’s going on inside of you is a vital part of the healing process.”

Jane Gillespie is one of Life Force Cancer Foundation’s Counsellors. Life Force is a non-profit organisation, providing emotional/psychosocial support for people dealing with the experience of cancer, through a range of support programs and therapies including group work and meditation, counselling special and retreats. Support groups are held weekly in Sydney’s metropolitan area.

More information about Jane or Life Force can be found at these websites;

www.janegillespie.com.au                         www.lifeforce.org.au

 

CAN COUNSELLING HELP CANCER PATIENTS AND THEIR FAMILIES?

Receiving a diagnosis of cancer is a traumatic experience. One minute you’re ‘normal’ and the next your entire life has been turned upside down.

It can be hard, even impossible, to talk to family members or friends about the roller-coaster of emotions that you have been commandeered into riding. When someone is diagnosed with cancer, they and their family can feel shocked, disbelieving, frightened, without direction or simply numb. Talking things through in confidence with someone who understands the emotional challenges of cancer can be extremely helpful.

Speaking individually to an experienced cancer counsellor can ease the sense of isolation you may feel and help you to find ways of facing the challenges ahead. This also applies to family members, friends and colleagues. By talking privately to a counsellor they can explore their anxiety, grief and any other emotions openly and honestly without needing to shield the person who is ill.

Why cancer counselling?

Research shows that counselling can be significantly useful in helping individuals and families face and meet the many challenges that a cancer diagnosis brings with it. This has been demonstrated to improve their quality of life.

During counselling, patients and families can learn how to cope more easily with their emotional issues. This helps them to communicate their needs better when speaking to Health professionals.

Counselling helps in easing any tension in relationships with family and friends. Optimistic but realistic outlooks replace the burden of positive expectations. Just saying “I’m being positive” doesn’t actually mean much, although being optimistic can always help you to enjoy life more in the here and now. However, if fears are present (and why wouldn’t they be?), then it is healthy to talk about these and get them out into the light of day.

How might you feel?

Some responses that people may feel when they are told they have cancer:

• Shock: “What?? No!”
• Denial / Disbelief: “It’s a mistake, those aren’t MY test results.”
• Withdrawal: “I can’t/don’t want to talk to anyone.”
• Feeling isolated: “Nobody understands.”
• Anger: (“*#@^!!!”)
• Loss: “But I’ve so much more I want to do with my life.”
• Body image issues: “Will I look like a freak?”
• Fears associated with sexuality and intimacy: “No one will every desire me now.”
• Fear and uncertainty: “What’s going to happen to me?”

Anything you feel is valid and deserves to be acknowledged, not only by those around you, but also by you, yourself.

Seeking individual counselling or becoming part of a support group may be where you can find this acknowledgment.

After a cancer diagnosis, you might feel as though you have no control over what is happening to you and this can be very frightening. Uncertainty is often one of the most difficult things to deal with. You might feel as though cancer and its treatment have taken total control of your life and this can lead to feelings of powerlessness.

Counselling allows you to take back some control over your life and provides you with some semblance of security again. It can help you to enjoy your life despite the illness.

While it can be terrifying to think about it, it is natural to want to know what is likely to happen to you, so that you can plan for your future.

Sorting out your affairs so that everything is in order can be very confronting but it can also be helpful. Even though it’s likely to be painful for you and your family to talk about dying, it can also provide an opportunity to talk about what is important to you all and develop deeper levels of intimacy with each other. Regardless of how long the cancer patient lives, everyone benefits by being open and honest about what they value in their relationships.

Many cancer patients feel as if they have lost control of their lives. Talking to a counsellor or others going through a similar experience can help you to regain a level of control over how you cope.

To find out about support groups go to http://www.lifeforce.org.au

© Jane Gillespie

 

Excellent resource for people with cancer

So often the emotional impact of being diagnosed with cancer is overlooked.  I’ve talked about this before but just found this excellent book produced by the National Cancer Institute in the United States: http://www.cancer.gov/cancertopics/takingtime/takingtime.pdf.

Just about everything written in this resonated with me.  I think this publication, or something very similar written by local cancer organisations, should be made available for everyone who has been diagnosed with cancer.

Highly recommended.

Jane Gillespie – google.com/+JANEGILLESPIEHolisticCounsellor

Flight MH370

The recent announcement that Malaysian Airlines Flight 370 has crashed into the sea and that all lives have been lost has killed any remaining hope for the families and friends of the passengers and crew onboard. Our hearts must go out to everyone involved in this tragedy.

It will be almost impossible for some of those who are directly affected to let go of the need for answers. What happened? Where did the plane go down? Who is responsible? Sadly we may never have answers to any of these questions.

I personally think that the media have not behaved well; there has been an almost gleeful desire to lay the blame on the pilot and/or co-pilot. Yet how can we know exactly what happened? This finger pointing leaves the families of the pilots, who will be suffering as much grief as anyone else, with the added burden of blame and/or shame due to the theory that it was either a terrorist attack planned by one or both of the pilots or a suicide mission.

I simply cannot get my head around the idea of a terrorist attack that leaves absolutely no clue as to who perpetrated it or what point they would have been trying to make. Also, why would someone who wanted to end their own life take a planeload of innocent people with them?

While I understand the need to find someone – anyone – to blame, it serves no purpose to make accusations when there is no definitive proof. I am also well aware that the theories about the pilots could turn out to be true but I will always believe in innocent until proven guilty. Journalism should be about telling the truth, not pushing a particular unproven viewpoint.

This is an opinion piece but I am not saying that anyone has to agree with my opinion. I am saying that I don’t know the facts, whereas some journalists seem to have decided that they do know all the answers and are quite happy to vilify people who have not been proven guilty of anything.

While search efforts continue in an attempt to find some trace of the wreckage and hopefully the Black Box, the overriding need of the bereaved will be a sense of community. When people go through the same or similar tragedies, the pain can be ameliorated if it is shared with others who are experiencing or have experienced similar terrible losses.

I believe that it’s probably too early for counselling or psychological support. While not impossible, it is highly unlikely that trained professionals will have had similar experiences to these grieving people. Right now, they simply need to be able to talk and talk and talk to others who truly can understand. Sometimes this is all that is needed, but qualified counselling would be appropriate at a later date if necessary.

Whatever emotions those left behind have, whatever behaviours they exhibit, all should be deemed to be normal in these circumstances. I hope that they are given the opportunity to bond with fellow sufferers without too much interference – no matter how well meant.

© 2014 Jane Gillespie | google.com/+JANEGILLESPIEHolisticCounsellor

Update on my post cancer life

I found out today that book I was involved in putting together, “Finding Our Life Force”, has been reviewed on Stephanie Dowrick’s Universal Heart Book Club website (http://www.universalheartbookclub.com/2014/03/walter-mason-on-finding-our-life-force.html).

On checking this out and clicking on a link to my name [as you do :-)], I came across an article that was published online in 2010.  In January this year (2014) I celebrated my 20th Anniversary since being diagnosed with breast cancer so I thought it was time to update some things.  The article is below, with some amendments to make it more current:

“Jane Gillespie lives in Australia, where she worked with a cancer foundation for 14 years, has a private counselling practice and is an author.  She was not always so self-confident.  After surviving breast cancer, she fell apart.  She had professional counseling and joined a support group. She changed her life, her career, and found a new identity.   Jane tells her survivor story here.

Cancer – a Springboard

In 1994 I was a single parent caring for a disabled 16 year old, the only one of my three children still living at home. After my regular annual medical checkup, my doctor recommended that I have a routine mammogram, simply because of my age. How lucky was I! After this first ever mammogram, something suspicious was found and I was diagnosed with breast cancer. This necessitated a lumpectomy and axillary clearance followed by a total mastectomy and seven months of chemotherapy.

My Breakdown

Despite surviving the onslaught of treatment, a few months after this finished I had a breakdown. I had resigned from my job because life seemed too short to be doing something I wasn’t passionate about and my energy levels were so low I had to have some time out. While I was dealing with the disease I’d kept the lid firmly on my feelings about having to face my mortality, but not having work to go to and no more regular hospital visits meant that there was now nothing else to focus on. I couldn’t hide any longer.

Crisis of Identity

Ever since my daughter was born I had believed that my role was to take care of her until she died. Now here I was facing the possibility that I could die first and I agonized over what would become of her. It didn’t matter that my oncologist told me that my prognosis was good. I was convinced that I was going to die without ever having truly lived. My life now seemed to have been a waste. Sure, I’d raised three children, one with special needs, but I couldn’t see me anywhere in the picture. Until then, my whole reason for being was based around my family. I’d always seen myself as a daughter, wife, and mother. I had no sense of identity as an individual.

Help From a New Oncologist

I sent my daughter to live with her father and stepmother and moved to Sydney. Unfortunately, you can’t run away from yourself and I was still crippled by anxiety and panic attacks. Luckily my new oncologist referred me to a psychiatrist who worked with cancer patients. This doctor explained to me that many cancer survivors feel exactly the same way; why wouldn’t I? My whole life had been shaken to its core and my current feelings of grief at the loss of the life I had always known had brought up unresolved grief from the past.

Life Force Cancer Foundation

His prescription for me was to join a support group. My oncologist is one of the Patrons of Life Force Cancer Foundation, so I joined a Life Force support group. My despair about possibly not surviving my daughter could well have become a self-fulfilling prophecy and I believe to this day that attending those meetings saved my life. I was able to work through the grief I felt at the loss of my pre-cancer life. It was immaterial that I didn’t feel that life had amounted to very much. It was all I knew and I was floundering. The other group members let me be a mess for as long as I needed to and this was the best possible medicine for me at that time.

Regaining Confidence

After I’d regained some of my physical strength, I enrolled in a course for women wanting to re-enter the workforce. At the beginning I didn’t believe that I would ever be able to function competently again. I thought that in the unlikely event that anyone would ever want to employ me, I was incapable of learning new skills. However, by the end of the course my shattered confidence was starting to come back.

Career and Family Changes


I got a job as a part-time bank teller and also began a counseling course. I graduated two years later and joined the Life Force Cancer Foundation team. For the next 14 years I co-facilitated between one and four weekly support groups in Sydney for cancer patients and survivors, as well as rural weekend retreats for survivors, patients and caregivers. A year after I left my daughter, I brought her to Sydney. She lived on her own for 17 years, supported by an organization that assists people with disabilities to live independently. However, due to her disability her health began to suffer and she was spending more time in hospital than out of it. After a mammoth struggle, I managed to get funding for her and she now lives in a group home with two other people with the same syndrome. She is extremely happy there and we both have peace of mind now, knowing she will be safe and well looked after for the rest of her life.

Writing, Counseling, Public Speaking


Writing was something I’d loved as a teenager, but I somehow let it go after marriage. In 2000 I enrolled in a novel writing course. I eventually resigned from the bank in 2002 to set up my own counseling practice, and to write the ‘Great Australian Novel’. It took me 12 years but I have now finished the first draft of my novel and am in the process of editing and rewriting. In March 2007 Journey to Me was published. This is a memoir about my experience of surviving cancer and building a new life for myself. I have also had a novella published and have written several others. Writing is my creative outlet and I believe everyone needs something that brings them this kind of pleasure.

Even though I have retired from my work running cancer support groups, I still have my private counseling practice, specializing in grief and loss.

I was spokesperson for the Life Force Cancer Foundation while I worked as a counseling group facilitator and have retained a position on the Management Committee so am still happy to act as spokesperson if the opportunity arises. I occasionally speak at conferences, seminars and service groups about how it is never too late to change your life.

Civil Marriage Celebrant


I trained to become a Civil Marriage Celebrant and was appointed by the Australian Attorney-General in September 2004. Working with my private counseling clients can sometimes be draining and sad. However my role as a marriage celebrant, connecting with happy couples while they are planning their future lives together, balances everything nicely. It is important for me to feel that I make a difference to people’s lives and I believe both my careers help me to do this.

Painting My Life’s Canvas

Last year I was diagnosed with a nasty squamous cell carcinoma (SCC) on my neck and after having this surgically removed, I underwent daily sessions of radiotherapy, five days a week for four weeks. I was astonished at how destabilizing it was when I was given this news; it took me straight back to 1994 when I was diagnosed with breast cancer. This showed me just how lingering the effects of PTSD can be, because it immediately brought forth almost overwhelming anxiety again. Luckily this time I had the knowledge and tools to handle this and with the help of supportive friends and my family I was fairly quickly back on an even keel. I guess the main thing was that this time I knew to ask for help, whereas 20 years ago I felt that I had to do it on my own. Cancer may not be a death sentence, but it is a life sentence. I still live with the Sword of Damocles hanging over me. My diagnosis last year is proof that there are no guarantees. I will never view cancer as a blessing in my life; more like a blunt instrument! However, it did become the springboard for me to make a fulfilling and joyful new life where I have a sense of who I am, just as Me. I love this saying by Danny Kaye: Life is a great big canvas and you should throw as much paint on it as you can.”

(c) 2014 Jane Gillespie – google.com/+JANEGILLESPIEHolisticCounsellor

Grief treated as mental illness!

Years ago I heard a very disturbing story about a young woman who had a bilateral mastectomy and ended up in the psychiatric ward of her local hospital. 

Through various contacts I was able to arrange to speak face to face with Gemma* and verify the pertinent facts.

She had found some suspicious lumps in both her breasts and despite being told that these were ‘only calcification’, she did some research on the Internet† and discovered that calcification can indeed turn into cancer.  Because she was a single mother with two young  girls (aged 9 and 11) to raise, she wasn’t prepared to run the risk of them possibly losing their mum before they were grown-up so she decided to have both her breasts removed.

The surgery was performed by a breast surgeon and she was relieved to think that she needn’t live with the spectre of cancer hanging over her.  However, she had considerable post-operative pain that the surgeon dismissed as histrionics and she was sent home from hospital with no discharge plan in place.

No one took the time to find out what support she might have at home and she was told to take Panadol if the pain was severe.

Gemma found it impossible to sit up again after she lay down and spent her first night at home in agony, eventually wetting the bed because she was unable to get up to go to the toilet.  Her daughters’ bedroom was at the back of the house and hers at the front, so they couldn’t hear her call for help.  And realistically, what could these two children have done for their mother?

It’s tempting to ask why she didn’t speak up and explain her home situation but the responsibility rested with the hospital to ask the right questions.  When faced with momentous circumstances many people don’t function in fully adult ways and this young woman needed someone to take the time to make sure that she had a support network in place.

Friends who had minded the children for the few days Gemma was in hospital couldn’t keep them any longer because they were moving to a different State and her boyfriend was overseas at the time.  There was no one else to look after them and because no one asked the right questions or told Gemma that services could be set up to get her little family safely through her recovery period, she felt she had no option except to go home and look after them herself.

She also wasn’t prepared for the overwhelming grief that she experienced when she finally plucked up the courage to look at her chest. When her boyfriend returned he didn’t understand that her constant crying and withdrawal were signs of depression. Gemma had suffered depression in the past; how could the surgeon or hospital not know this?  Obviously she hadn’t told them, but why wasn’t she asked how she was coping or how she would manage when she went home?

Peter* had no experience with depression and had no clue how to treat her.  His solution was to tell her to ‘get over it’, ‘be grateful she didn’t have cancer’ and ‘she had chosen to have her breasts removed’.  Eventually he ended the relationship.

This was the final straw for Gemma and she took an overdose of sleeping pills. 

She left a note that her older daughter found, telling them to contact Peter because he would look after them.  She also said where she was going so it seems clear that she didn’t really want to kill herself.  Luckily Peter found her and took her to the hospital where she was admitted to the psychiatric ward.

Here she was pumped full of sedatives to keep her quiet, but refused pain medication despite still suffering since her surgery.  Four days later she was finally seen by a psychiatrist who thought to ask her what had happened in her life recently.

Luckily this doctor realised that she needed counselling, not locking up, and arranged for the hospital Social Worker to sort out home care for her until she was fully recovered and appointments with a psychologist, as well as medication to help her function in the short term.

In my conversation with Gemma it was apparent that she was dealing with a high level of grief.  Every cancer patient (or in her case, potential cancer patient) will experience a sense of loss to varying degrees.  Their progress through this grief will depend on the support network that they have and the ability of professionals and family and friends to allow them to ‘tell their story’ as many times as they need to tell it, until they have come to terms with their new reality.  This needs to be done without judgment or advice on how to ‘fix it’.

Gemma’s case was more extreme than most, but given the lack of any planning by the hospital regarding her post-surgery discharge and her personal circumstances, perhaps not really so surprising.

Thankfully these days it is unlikely that anyone would slip through the cracks to the same extent that Gemma did, as it is now generally recognised that duty of care doesn’t end with a patient’s discharge from hospital.  However, I believe that there are still times when our over-stretched hospitals don’t follow their own protocols for discharging patients.

So if you know someone who is going through a traumatic time, please ask the question: ‘Are you okay?’ If the answer is yes but you doubt this is true, please advocate on behalf of your family member/friend to make sure that there is indeed a functioning support system in place before a patient is discharged from hospital or if they seem to be struggling down the track.  Don’t just assume that because it happened a while ago (regardless of what ‘it’ was), that the person who went through the experience is okay now.

* Names changed

† I recommend that if you do consult Dr Google, always discuss your findings with your own medical advisers

© Jane Gillespie

http://janegillespie.com.au/counsellor.html

Calling all cancer patients – just BE POSITIVE!

“You just have to be positive and you’ll be okay!”

How many times have you heard someone say this?   It really, really isn’t that simple.  In fact, to say that to someone who has been diagnosed with cancer, even when meant kindly, isn’t helpful at all.

How does it feel to hear this when your life has been turned upside-down, you’re maybe struggling with the side-effects of treatment and in a deep dark hole grieving the loss of your old life or hopes and dreams for your future?  Does this platitude make you feel better?

When I was first diagnosed I experienced emotions ranging from feeling like a failure because I got cancer in the first place, to wanting to smack anyone who told me to ‘just be positive’!

It’s been a popular notion for many years that if you have a positive attitude you won’t get cancer or you can get rid of it or it won’t come back again.  To be told that you ‘have’ to be positive places an enormous weight onto your already burdened shoulders.

As if it isn’t bad enough just dealing with the physical aspect of cancer treatment, even with a good prognosis it’s absolutely normal to question whether you are going to survive.  If you believed that you had many more years/decades ahead of you and now you’ve been confronted with your mortality, it’s perfectly natural to be depressed and frightened.

If you have cancer and start believing that all you need is to be positive, how will you feel if despite the best efforts of your doctors and other health advisers, your cancer doesn’t respond to treatment?  Does this make you a failure?  Does it mean you didn’t try hard enough?  The answer to both those questions is a resounding NO.

It’s vital that you take this misguided belief and chuck it as far away from you as you can.  Imagine you’re on top of a high cliff and the be-positive notion is something you can pick up and hurl out into the depths of the ocean.

There is nothing wrong with being optimistic, which is a very different thing to the popular interpretation of being positive.  Being optimistic still allows for times when you feel afraid or worried.  Whatever emotions you experience are okay; feelings aren’t good or bad, they just are.  If you don’t feel as though you have permission to feel down sometimes rather than up all the time, you run the risk of being stuck in the uncomfortable feelings.  You need to acknowledge these emotions before you can release them.  Pretending by trying to be positive all the time, only makes those feelings stronger and harder to let go.

The best thing to do when you’re feeling depressed, anxious or just plain terrified, is to talk to someone who will listen – without trying to fix things for you. 

Finding somewhere to off-load everything you’re feeling takes the power out of your challenging emotions and you will move to a calmer place much more quickly.

This is where cancer support groups can be very helpful because everyone there ‘gets it’.  To be validated for what you are feeling is the best way to be able to eventually move forward.  Each time you are acknowledged for what you are going through, those feelings become less powerful.

When people tell you that you have to be positive, what they are doing is making it easier for themselves to not have to worry about you.  Guess what, they are coming from fear too.

The best way to respond when someone tells you to be positive is to let them know that this doesn’t make you feel better and in fact is unhelpful.  Perhaps they need to walk in your shoes to fully understand, but most people will back off once you tell them how you feel when they give you this sort of advice.

Unless you have asked for their opinion or advice no one has the right to give it to you.

And even if you did ask them, you still have the right to say what feels helpful and what doesn’t.

If being honest with these people doesn’t work then whenever you see them I suggest you move away from them as soon as you can.  Surround yourself with people who are brave enough to be with you when you feel depressed or frightened and offer nothing more than their accepting presence.

For those people who don’t know what to do when faced with someone who is distressed, it’s really easy – you don’t have to DO anything!  If you feel you must say something, make it as simple as, “I can see you’re having a tough time today.  I’m so sorry”.

One thing I am positive about is that anyone who can sit with me when I’m in emotional pain, without telling me what to do, is a true friend.

© Jane Gillespie

https://www.janegillespie.com.au/counsellor.html

Codependency

Codependence is an emotional and behavioural condition that affects a person’s ability to have healthy, mutually satisfying relationships.  It is also known as “relationship addiction”; people with codependency often form relationships that are one-sided, emotionally destructive and/or abusive.

Most codependents come from dysfunctional families.  In these families problems that exist are not acknowledged.  Family members don’t talk about or confront the problems and as a result, they learn to repress emotions and disregard their own needs.  They focus on simply surviving and develop behaviours that help them deny, ignore, or avoid difficult emotions.   They are unable to confront uncomfortable situations with others because confrontation can lead to emotions boiling over and that is too frightening to contemplate.

A co-dependent person will place the health, welfare and safety of everyone else before their own.  By doing this they lose contact with their own needs, desires, and feelings of self worth.

Co-dependent behaviour

People who are co-dependent always look outside themselves for things or others to make them feel better. They find it hard to be authentic, hiding behind a mask that they eventually come to believe is real.  The truth is they have no idea who they genuinely are.  They gravitate towards relationships with other dysfunctional people; those who may be addicted to drugs or alcohol or suffer from mental illness.

They invariably take on the role of caretaker in any relationships they have, but the caretaking eventually becomes compulsive and defeating.  Codependents often become ‘martyrs’.  Wives cover up for alcoholic husbands; mothers make excuses for wayward children; or a father might never show his son or daughter that antisocial behaviour has consequences, but instead pulls strings to keep them out of trouble.

Codependents like to be in control, believing that if everyone else would just change and do what they tell them to, everyone’s lives would be wonderful.

Codependent people tend to:

• Have an over-developed sense of responsibility for the actions of others
• Confuse love and pity, with the tendency to “love” people they can pity and rescue
• Do more than their share, all the time
• Feel hurt and/or resentful when people don’t recognize their efforts
• Have an unhealthy dependence on relationships. The codependent will do anything to hold on to a relationship, to avoid the feeling of abandonment
• Exhibit an extreme need for approval and recognition
• Feel guilty when asserting themselves
• Have a compelling need to control others
• Not trust themselves and/or others
• Fear being abandoned or alone
• Find it difficult to identify feelings
• Be rigid and have difficulty adjusting to change
• Have problems with intimacy/boundaries
• Suffer chronic anger (often unrecognized)
• Be dishonest in communications
• Have difficulty making decisions

Some questions to ask yourself if you think you might be co-dependent (NB: only a qualified professional can make a diagnosis of codependency; not everyone experiencing these symptoms suffers from codependency.)

1.  Do you avoid arguments at all costs?
2.  Are you always worried about what other people think of you?
3.  Have you ever lived with someone with an alcohol or drug problem?
4.  Have you ever lived with someone who hits or belittles you?
5.  Are other people’s opinions more important than yours?
6.  Do you find it hard to adjust to changes at work or home?
7.  Do you feel rejected when significant others spend time with friends and not you?
8.  Do you doubt your ability to be who you want to be?
9.  Are you uncomfortable expressing your true feelings to others?
10. Have you ever felt inadequate?
11. Do you feel that making a mistake reflects badly on you?
12. Do you find it hard to accept compliments or gifts?
13. Do you feel humbled or ashamed when your child or spouse makes a mistake?
14. Do you think people in your life would go downhill without your constant efforts?
15. Do you frequently wish someone could help you get things done?
16. Do you have difficulty talking to people in authority, such as the police or your boss?
17. Are you confused about who you are or where you are going with your life?
18. Do you have trouble saying “no” when asked for help?
19. Do you have trouble asking for help?
20. Do you have so many things going at once that you can’t do justice to any of them?

If you identify with several of these symptoms or are dissatisfied with yourself or your relationships, you might consider seeking professional help.

How is Codependency Treated?

Because codependency is usually firmly based in a person’s childhood, treatment often involves exploration into family of origin issues and their relationship to today’s destructive behaviour patterns.  Treatment can include education, experiential groups, and individual and group therapy through which codependents rediscover themselves and identify self-defeating behaviour patterns. Treatment also focuses on helping patients to get in touch with feelings that have been buried during childhood. The goal is to allow them to experience their full range of feelings again.

A lot of change and growth is necessary for the codependent and their family. Any caretaking behaviour that allows or enables bad behaviour or abuse to continue in the family needs to be recognized and stopped. The codependent must identify and embrace his or her feelings and needs. This may include learning to say “no”, to be loving but tough, and learning to be self-reliant. People find freedom, love, and serenity in their recovery.

Hope lies in learning more. The more you understand codependency the better you can cope with its effects. Reaching out for information and assistance can help someone live a healthier, more fulfilling life.

Suggestions for where to get help:

The Meadows Treatment Centre, Arizona, USA

Bridge to Recovery, Kentucky and California, USA

South Pacific Private Hospital, Sydney, NSW, Australia

Malvern Private Hospital, Melbourne, Vic, Australia

Gats Counselling and Treatment Services, Adelaide, SA, Australia

Set Yourself Free Programs, based in Sydney Australia but available via Skype

CoDA (Co-dependents Anonymous), worldwide

Al-Anon, worldwide

Books:

“Facing Codependence” and “The Intimacy Factor”, by Pia Mellody

“Codependent No More” and “Beyond Codependency”, by Melody Beattie

(c) Jane Gillespie 2012

http://www.yourlifecelebrated.com.au

DISABILITY AND GRIEF

THOUGHTS FROM A PARENT OF AN ADULT CHILD WITH PRADER-WILLI SYNDROME

I am currently experiencing a resurgence of grief at the impact that my daughter’s condition (Prader-Will Syndrome) is having on her life today.

Prader-Willi Syndrome (PWS) is a fairly rare genetic disorder resulting from an abnormality on the 15th chromosome.  The result is a malfunctioning of the hypothalamus region of the brain, leaving affected people with an appetite control centre that doesn’t function.

When Katherine was born she was like a tiny rag doll, with no discernible muscle tone at all.  She had no sucking reflex so required tube feeding for the first five weeks of her life.  There are several syndromes that present with similar symptoms to PWS in infants, so we weren’t given a definitive diagnosis until she was a year old.

Some of the characteristics that Katie shares with other people with PWS are:

• Delayed milestones, e.g. didn’t walk until she was 35 months.
• If given the opportunity she will find and eat food anywhere she can.
• She is short (147 cm) and has extremely small hands and feet.
• She has a high percentage of body fat, with a corresponding lower percentage of lean body mass and therefore she gains weight really easily.  She weighs around 125 kg.
• Due to her reduced muscle mass she has a very low metabolic rate and therefore only requires 60% of the energy intake of her peers.  She desires about ten times this amount.
• She has never gone through puberty (she is now 35).  One consequence of this is quite child-like behaviour at times.
• Classified as borderline intelligent.  She is VERY smart in some regards, but her childish reactions to certain situations means she can present as being about as mature as a 9 year old.
• She is a ‘skin picker’.
• She can be stubborn, argumentative, manipulative, and repetitive and chatter incessantly.

As soon as she was big enough to be able to access where we kept food we put a lock on the fridge and pantry and everything she ate was closely monitored.  Her insatiable appetite set in when she was about six.

I felt I had to eat the same way that she did so that she didn’t think she was the only one in the family who couldn’t eat certain foods.  This created such a problem for me that I developed an eating disorder (compulsive over-eating).  It was almost as though I too had some of the symptoms of PWS because of my obsessive thoughts about food and inability to stop eating once I started with certain foods.  As soon as Kate went to sleep I’d have my head in the pantry or fridge practically inhaling food that I wouldn’t eat in front of her. I still battle with this condition.

When Kate was growing up I made the mistake of thinking that I was the only person who could take care of her.  Just before her 11^th birthday my marriage ended and I placed even more importance on “being there” for her, especially as her two older siblings no longer lived at home.  This put me in the position of not really having any life of my own.

Five years later I was diagnosed with breast cancer.  I came to realize that if I died Katie would be totally lost because I had made her completely dependent on me.  The sobering truth is that we had an unhealthily enmeshed relationship and were totally co-dependent.

To ensure my recovery I sent her to live with her father and stepmother.  This was the hardest thing I have ever done in my life and I felt incredibly guilty, as though I had abandoned her, but I knew that if I were to survive I had to give both of us a life independent of each other.

A year later I brought Kate to Sydney where she was accepted as a client of an organization that assists people with disabilities to live independently.  With their support she has lived independently from her family for the past 17 years.  The most important thing we have learned is that she can survive without me.

However, given her current situation, without the level of support that she now requires, it is increasingly unlikely that I will die first because her health is becoming seriously compromised.

In the past 20 months she has been hospitalized five times because she has developed cellulitis.  This occurs as a result of her picking at leg ulcers or because no one has been available to check to see that she puts on clean compression stockings every day and washes the soiled ones.  The number of weekly carer hours (drop-in only) assigned to her with her current service provider has been reduced from 22 to six hours per week.  This is despite Kate recently being assessed as requiring 46 hours of support per week plus a sleep over at night.

We are in the process of applying for funding for her to move from independent living to a group home, where she will receive 24 hour care.  This has now become urgent if her health isn’t to deteriorate even further.   I am feeling increasingly anxious about her future and will feel much calmer if I know that she is receiving appropriate care that will be ongoing when I am no longer around to advocate on her behalf.

When Kate was born we were not offered any form of psychological support.  We were just expected to ‘get on with it’.  I believe that this contributed to my diagnosis of breast cancer; having nowhere to process the loss of hopes and dreams we had for our little girl left an open wound for many years.  At least I now have access to counselling around the grief I’m experiencing as my daughter’s current situation challenges us to find a solution that will allow her the best quality of life possible in her circumstances.

There are many parents who are in worse circumstances as they are still caring full-time for their disabled children, despite advancing years.  I urge anyone who is in this situation to seek counselling and advice on how to find suitable care for their children in the future.

Jane Gillespie © 2012

http://www.yourlifecelebrated.com.au

CARING FOR SOMEONE WITH CANCER

You will probably suffer from both physical and emotional exhaustion before too long if you are the main carer for someone with cancer. The first thing you must do is ask for help.

Life goes on even while you are caring for the sick person.  Kids still have to do their homework, clothes still need to be washed and ironed, bills need to be paid, gardens need tending, bathrooms need cleaning and shopping and cooking have to be taken care of.

Other family members and friends are usually only too willing to do what they can, but sometimes they don’t know what they can do, so make a list of things that you know would help you.  They will be grateful for your suggestions.  Some things on this list might be:

• baby-sitting
• cooking (and freezing) meals
• providing transport for medical appointments
• taking children to weekend sport
• offering to sit with the patient while you do other things
• mowing the lawns and/or weeding garden beds

Make sure some of those other things include ‘time out’ for you, for example:

• go to a movie or a concert
• meet a friend for coffee or lunch
• go for a walk in the park

It serves no purpose if you fall in a heap. 

You must take care of yourself if you are going to be able to care for anyone else.

Now is the time to call in all favours.

You need to be guided by what the cancer patient wants and always try to respond openly to conversations that they initiate. Never, ever say to someone who tries to tell you that they are afraid of dying that they ‘mustn’t talk like that’.

Talking about fears doesn’t make them happen and it’s much healthier to get those feelings out into the open.  And if the cancer is terminal, it’s really cruel not to let people talk about what it means to them to be coming to the end of their life.  If necessary arrange for someone (minister, trusted friend, professional counsellor, etc.) to facilitate a meeting so that you can talk about these big, scary things without it feeling like it’s going to end in disaster.

You really need to de-brief your fears, exhaustion, frustration and so on – all those emotions that are raging through you, that you can’t and don’t want to share with the person you’re caring for.

Attending a support groups of other cancer carers can help take away feelings of isolation; “nobody else understands what it’s like for me”. It is liberating to hear that others sometimes feel  overwhelmed, despairing, terrified and yes, even furious with the person who has cancer.  No one there will judge you (it’s easy to guess that you’re doing a pretty good job of that yourself!) and it helps to know that all those feelings are a normal reaction to an incredibly stressful situation. I believe it is vital for carers to have somewhere to debrief what their life is like, away from the person they are caring for, so that they can be completely honest about what is going on for them without having to worry about hurting anyone else.

In Sydney, Life Force Cancer Foundation runs weekly support groups for carers in the Inner West and for patients & survivors in the Eastern Suburbs and Inner West.  http://lifeforce.org.au/support-groups/

I also recommend that you talk to hospital social workers to find out what other assistance is available.  Because the system is so stretched, help usually isn’t offered unless you ask for it.  Be the squeaky wheel and insist on seeing the relevant social worker.

This is always going to be an extremely challenging time but if you look after yourself as much as possible, it doesn’t have to be totally overwhelming.

(c) Jane Gillespie 2017