Category Archives: Disability

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

Emotions are scary!

I am being reminded how true this is because I’m still battling bureaucracy on behalf of my daughter who requires funding into specialized accommodation.  We applied for the funding for an existing placement in January this year and still haven’t heard anything.

I have run the gamut of fear, sadness and anger that at times has become rage, making me want to commit violence!  My instinctive reaction has been to eat; to try to suffocate the fear this emotion brings up for me.

Anger when overtly expressed, was not acceptable in my family of origin.  Oh, there was plenty of passive aggression happening; when displeased, my mother would withdraw into coldness and Dad would stomp outside to chop the hedges within an inch of their lives with great big clippers – “snip, SNIP, SNIP”!  Once when I was nine I transgressed and Mum didn’t speak to me for a week.  Everything was relayed through Dad or my sister.  I felt as though I’d been banished and would far rather have had it out with her and cleared the air.

Then when I was 12, and my sister who was 16, went to the pictures one night and didn’t come home until 2.30 a.m.  Dad was standing at the door and slapped her across the face so hard that I’m surprised she didn’t get whiplash!  I saw this happen and was so traumatized by it that I instantly decided that I had to be the peace maker of the family from then on.  I was the original Good Girl for the next 40 years, trying to protect everyone from ever being angry with anyone else.

It took me until my early fifties before I learned how to tell people what I was feeling without thinking the world would end.  And it took a few more years to learn that people have to sort things out for themselves and it’s not my place to intervene if I’m not directly involved.

Knowing all this hasn’t really helped in the situation I’m facing now because I’m afraid of allowing myself to express how frustrated, upset, grief-stricken and yes, angry, I am at how slowly bureaucracy works.  However, I have recognized my old patterns and am doing my best to follow the wise words of the Serenity Prayer:

“God, grant me the serenity

To accept the things I cannot change,

Courage to change the things I can,

And wisdom to know the difference”

I have enlisted help from as many quarters as I can to achieve the desired outcome.  I have expressed my fear and grief that if something positive doesn’t happen soon a life may well be cut short and the result has been a surge of support from people who are in a real position to help.  I’ve talked to my therapist, I’ve written in my journal, I’ve written letters to powerful people and threatened to go to the media – and I’ve eaten chocolate!  I know I’m not alone and that is the best thing.

Every day I pray that a resolution will be achieved very soon so that my beloved daughter can receive the full-time care that she needs to live a full, healthy life.

© Jane Gillespie 2012
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 11th 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