Forums de discussion

 
Réponse de SusanG
09 mai 2012, 0 h 57

Hi Everyone:
My name is Susan and I'm here because I know the power that hospice care has to help not only the dying but those of us who are left to carry on.

In 1993, I was at a bank and the teller asked if I wanted to donate to an upcoming building project--Canuck Place Children's Hospice. She explained what the philosophy of hospice was and how it would be put in to practice at this new place being built for children--I had heard about hospice before and thought it was a great idea so I donated-little did I know how important it was to become to me.

My oldest daughter, Brenna, was a healthy child at birth but developed seizures and other behavioral issues around the age of two. We spent hundreds of days at BC Children’s Hospital over the next two years while doctors struggled to find out what was wrong. Finally she was diagnosed with a terminal brain disease, Batten disease, for which there was no cure. Within hours of the diagnosis I was asking about Canuck Place. The building was not completed yet but due to my interest, I was invited to serve as a parent advisor.

The doors of Canuck Place Children’s Hospice opened in the fall 1995 and we were the third family in the door. We received respite care there and we chose for Brenna to die there. She took her last breathe surrounded by family and the sounds of life on September 21, 1997 at the age of eight. I tell people it was a beautiful day--the majority of people will never understand that and that is ok. Losing someone you love in death is never nice but if you have to go through it having support through hospice care is one of the very best ways to do so.

One of the ways I coped during those years of caring for Brenna was by helping others so I took the lead in working with the CPCH chaplain to set up a family support group and to write a family newsletter. In 1999 I was asked to sit on the Board of Directors for Canuck Place and fulfilled that role for five years. During that time I also served as an informal family advocate and assisted a number of other families whose children where in the Canuck Place program, particularly during the end stages of their child’s life.

Eight years ago, my mother, who had suffered from a terminal illness for over 15 years herself, entered into the last stages of lifeIt was a very different experience for me; palliative end of life care for adults is different in that it is generally very short in comparison to the years that parents with terminally ill children often go through. My mom died in a hospital--it was what she chose because she knew it and was comfortable there. I was able to advocate with staff for her, my father and my brother by having her placed into a private room in a ward where our family could have some privacy. I brought in her blankets and pillows from home and other personal momentos and things that had meaning for her. Neither my father or brother had been with someone who had died so I was able to talk with them about what to expect and set up meetings with healthcare professionals who could also assist. Just hours before she died, I was talking to the nurses and they asked how it was that I could be so calm and how I knew what to do; I told them about Brenna and explained that no matter what I see or what happens to me in my lifetime there will be nothing as bad as watching your own child die. I told them that I learned from Brenna’s death that it is a true honor and privilege to help someone die in the way that they choose and to assist their loved ones left through it and beyond

In 2005 BC Children’s hospital was looking to hire a parent who had used the system extensively to manage the hospitals family advisory and I’ve been in this position since. My role there has grown to include directing the patient and family centred care program in the organization and although I advocate for many different issues palliative care and bereavement issues are very close to my heart. My connection to Canuck Place is still strong; I helped set up their family advisory a number of years ago and serve as a liaison between it and the BC Children’s Partners in Care Family Advisory.

From 2010 to July 2012 I was able to assist a friend who succumbed to breast cancer. With the help of friends, our spiritual community, and community nursing, we were able to keep her home until the day before she died. Caring for her took a really big physical tole on me but it had a lot of emotional ramifications too; it opened up some issues about Brenna that I realized I hadn’t dealt with and over the next six months I did a lot of revisiting and grief work. I came out the other side healthier and with the realization that the journey of healing after the loss of child is in some ways never ending - it gets easier but we are forever changed. It was around the same time that an old friend found my husband and I at a large convention. After talking for a while our friend told us that earlier that month his wife, who has a terminal illness, had nearly died from pneumonia and when she recovered she decided that she wanted to sign a DNR. We talked for a long time, openly and honestly about what that was like; he asked questions about what he could expect and what it was like for us when Brenna died. We suggested some resources he could turn to.

I left that conversation humbled. There were over 1200 people at the event that day including many of his close friends but he purposefully sought us out; he sought us out because he knew that my husband and I were safe people to have this type of conversation with. The realization hit me that we had people to turn to during our time of need and now our friend needed us to be there for him. It reminded me of what an honor it is to be able to help the dying or to help those who are going through the experience of losing a loved one. To that end I am delighted to involved with the Canadian Virtual Hospice and look forward to many enriching conversations.

Susan
 
09 mai 2012, 1 h 09

Hi Susan,
Thank you for sharing your incredible stories with us. Indeed, it is an honour for us to welcome you to the Virtual Hospice community.
Colleen 
 
Réponse de Brayden
09 mai 2012, 3 h 14

Hi, I am Brayden and I look forward to sharing some of my experiences in Hospice & Palliative Care over the last 15 years. I have been a volunteer with our Manitoba organization and I have been matched by them with over 20 men being on their end of life journey. I visit them in either their home, Palliate Care Wards, or Personal Care homes. As the need arises, I give bereavement support to families. I have been a volunteer visitor on the Palliative Care Ward in two hospitals and also on their Final Days, Final Hours program. Currently I visit weekly at our only private Palliate Care house which holds four patients. I have been very fortunate to have had awesome continuous training opportunities throu our local organization. Every match and visit that you make presents a new and unique experience. Not all are easy, in fact some have been a real challenge. I have learned that you die with the same character flaws that you have lived with all your life. I know with certainty that I am the one that has gained and developed the most from the relationships with these men and/or their families. I have also learned the importance of listening more with the heart than with the ears. What a privilege to have a stranger take you into that most inner part of their soul and sometimes be there to hold their hand as they die.
 
10 mai 2012, 16 h 33

Welcome Brayden. Offering support online will be another skill to add to your toolkit.  The community will certainly benefit from your insights. Thanks for joining us.
Colleen 
 
Réponse de Brayden
22 mai 2012, 2 h 08

Responding to SherriT, I just reread your comments and feelings of guilt because you are so far away from your ill parents. I have been a companion volunteer with many individuals that had their family members living at a distance and could only visit them periodically. I can just feel the guilt that you express so honestly. There is a great organization in Winnipeg, the Manitoba Hospice and Paliative Care, which match volunteers to visit people like your parents. Hopefully it is not too late to be an option for your Mom & Dad. You can contact them on behalf of your parents. I know many family members have gained some relief from knowing that a trained volunteer is keeping in touch with their loved one and can be a good sounding board for them as well.
 
29 juin 2012, 20 h 32

Are you new to the community? Find out more about some of the other members in this thread and feel free to tell us a bit about yourself too.
 
Réponse de passirose
28 juil. 2012, 3 h 00

Bonjour,


C’est avec plaisir que je me présente, de mon vrai prénom Suzanne.


Je suis de la région de Montréal, Québec, Canada, et suis âgée de 53 ans.  Maman d’une adolescente de 15 ans, et j’ai une vie heureuse avec un homme qui m’endure depuis maintenant 25 ans.


En 2009 j’ai été traité pour un cancer Inflammatoire du sein stade IIIB, ce cancer est agressif et a une survie à 5 ans d’environ 40%.  Je croyais être du bon coté des statistiques puisqu’après la difficile année de traitement, j’ai réintégrée pendant deux ans ma vie d’agente administrative dans un Centre de recherche hospitalier, affiliée à une Université de renommée internationale.  Je  me suis bien adaptée à ma nouvelle condition physique et je « soignais » mon moral en tendant la main à ceux qui en avaient besoin. J’avais reçu, je redonnais. Je me sentais bien, je me considérais comme une super-vivante.


Mon type de cancer du sein étant rare et méconnu, j’ai créé un pamphlet et un groupe de soutien, donné une conférence, enregistré mon témoignage avec la Société canadienne du cancer, j’ai aussi initié une collaboration entre le centre ou je travaile et une clinique spéciaisée aux USA dont le directeur a été invité a présenter une conférence à notre établissement, enfin, je t’ente de m’impliquer pour aider les femmes à passer aux travers de moments désagréables sans qu’elles ne se sentent isolées.


En février 2012, mon souffle étant de plus en plus court, j’ai avisé mon oncologue qui m’a fait passer une IRM.  Le résultat était pire que ce à quoi je m’attendais.  Une masse de 4.5x4.6cm au poumon gauche, des métas au poumon droit, et un peu partout des nodules enflammés, des métas tout le long de la colonne, au bassin, et au fémur.


Depuis mars 2012, je suis donc en chimio… à vie.


Tout comme j’ai fait en 2009, j’ai cherché de l’aide, une écoute qui comprendrais et par bonheur, une amie m’a rappelé ce site dont je suis devenue membre rapidement.


Fidèle à moi-même, je tends encore la main, si quelqu’un désire discuter en français, je suis disponible.


Amicalement,


Suzanne
 
Réponse de SherriT
29 juil. 2012, 1 h 11

Thanks Brayden, I just saw your post now.  I happen to be visiting my parents in Wpg right now.  At the moment, neither of my parents are actually palliative, at least I don't think so.  They are both frail though and an accident waiting to happen.  My Dad refuses to move from their house even thought it is my Mom who has to do everything.  I have come to accept that I can't make them do anything, but am trying to help as I can.  I was encouraged to hear about the volunteers you mentiowill and will definately keep that in mind for down the road.  Thank you so much for caring enough to respond.

Sherri 
 
Réponse de NatR
29 juil. 2012, 21 h 05

Mon cher Suzanne,

Je vous remercie pour votre lettre. Je ne suis pas de langue française, mais je suis en utilisant Google translate. Je suis sûr que d'autres qui parlent votre langue vous écrivez également. Je voulais vous faire connaître votre histoire a été lue par moi, et que je suis très désolé d'entendre parler de votre situation actuelle. Il me semble que vous êtes très bien informé, très au courant, très bien préparés. Il semble aussi que vous avez besoin de soutien, et je suis content d'être venu à l'Hospice virtuel de trouver ce soutien.

Je vais faire de mon mieux pour communiquer avec vous à l'aide de Google. Ne permettez-moi de savoir si ce message vient à travers vous bien. Je sais que la traduction n'est pas toujours parfaite.

Vous disposez d'un mari et sa fille qui vous donne l'appui. Comment êtes-vous tous les face ensemble?

Je vais attendre votre réponse et aussi vous souhaite une bonne soirée. Avec les outils que nous avons pour vous connecter Je voulais vous assurer que vous ne se sentent pas été oublié. 

Sincèrement, natr

 
 
Réponse de passirose
29 juil. 2012, 23 h 35

Hi Natr,

I am very touched by your french message, thank you very much.  I needed help lately and did received so much support from here, that I decided to give back. Smile

This message is to present myself and to let know the french speaking who may need hep, that someone is there to reach out if needed.

Feel free to reach for me if you need, I will answer with pleasure.

Sincerely,

Suzanne


Nos partenaires
Questions-réponses
Questions-réponses

Découvrez ce que les Canadiens veulent savoir

Consulter un professionnel
Consulter un professionnel

Notre équipe d’experts est là pour répondre à vos questions à propos des maladies potentiellement mortelles et de la perte d’un proche.

Simplement envie de parler?
Simplement envie de parler?

Participez aux forums
de discussion.

Livres, liens et bien plus
Livres, liens et bien plus

Recommandations de notre
équipe

Programmes et services
Programmes et services

Services offerts aux échelons
local, régional et national

S’abonner à l’Infolettre
S’abonner à l’Infolettre
  • logo
  • © Portail canadien en soins palliatifs, 2003-2024.