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07 déc. 2012, 14 h 29

Winsome,
How are you? I'm sure reading the exchange between tacos and iona show how different everyone's experience with COPD can be as well as some of the similarities. 

Perhaps you can find local services to help with the care of your mother. For example, home care or volunteers who could drop in to spend time with your mother to help out. Do you know about our list of Programs & Services? You can also ask our professional team confidentially about local resources close to your mom. 

What do you feel your mom needs most right now?

Iona,
Do you have visitors who come and spend time with you, help out and perhaps get you out and about?

Tacos,
What local resources have you found helpful?

I'm sure glasslady001 would be keen to get your tips about resources too.
 
Réponse de Glasslady001
09 déc. 2012, 14 h 59

Yes, I would! We will be getting the final prognosis for my husband on the 18th. I fear I will have to face losing him before the COPD takes me.
 
Réponse de iona
09 déc. 2012, 19 h 59

Dear Glasslady001

You have alot on our plate glasslady, my heart goes out to you... I'm not sure where you live tho most communities have Home care support which  really is a good service  if you are covered for it,,, privately paying can be abit costly  tho having the helping hands in preparing food can be a goddess send...If yr COPD is not server you can cope and live with it fairly well.... I hear yr fear of  your husband passing before you... I understand yr fears... Try to stay in the persent with your thoughts  ....over thinking can cause alot of stress, not good for either of you... Stay in touch  you are in my thoughts...
 
30 déc. 2012, 22 h 06

Hi Iona,

I've been thinking of you. How have you been lately? Are you snowed in where you live? 
Talk to you soon I hope.
Colleen 
 
Réponse de iona
30 déc. 2012, 23 h 07

hello colleen...communications have been pretty quiet....
I was looking for  socialization networking and perhaps this is not the meduim for that... in my search I've come across something called 'death cafes'  the one I read about happens in vancouver where folks meet up over coffee to actually talk about death...It is such a hard subject that I suppose it could go sideways pretty easy ... there's so much fear (which is creeping into me )  that I can understand why folks keep to themselves  on the issue...you don't want to open yrself up to  too much ---too much focus can be the wrong route also...  because we are living presently... I'm at the point of needing to move myself  towards living with others...it is just too lonely being alone tho there must be many in my shoes....anycase colleen...any suggestions?...
 
04 janv. 2013, 1 h 02

Hi Iona,

It is my hope that the Virtual Hospice forums do offer a safe, welcoming place where people can talk frankly about death. In my opinion, discussions about death usually revolve around life. While that may seem paradoxical, I don't see it that way. Talking about what we are about to lose helps us recognize what we cherish in what we have. At least that's been my experience. How about you?

While some may be looking to share about their specific disease and what they can expect (which I believe Tacos was hoping to learn through this forum), others are looking to share regardless of disease. For example CarolynMarie shared her journey with us to the end. You may appreciate connecting with Passirose and Jimmie, both of whom have stage IV cancer. Here are a few threads you may wish to participate in:
I suspect that the popularity of Death Cafes will spread across Canada, but likely only to the largest urban centres. I'm very appreciative of your helping to build such a community here in a virtual space where people can join in the conversation no matter where they live. With your help and others on this forum we will grow. 
Colleen
 
 
22 avr. 2013, 17 h 23

Dear Iona, Tacos, winsome and Glasslady,

It has been quite some time since we've heard from you on the forums.

Did you notice the new structure of the forums? We now have a forum specifically for people living with life-limiting disease. What do you think? 

It would be great to get an an update from you and to re-animate this conversation. What does Spring hold for you this year?

Colleen 
 
14 mai 2013, 12 h 33

Dear Iona, winsome and Glasslady,

I just received the news that tacos passed away last month - April 2. Tacos was an important member of the Virtual Hospice community. He worked hard at encouraging discussion about living with a life-threatening disease. While he didn't get the mentoring he had hoped for from someone who was living with more advanced disease than himself, he did get support from you and others on this forum.
Earlier this year members were invited to complete a survey about restructuring the forums. Tacos also had his say, prompting us to open this forum dedicated to people living with serious illness. I'd like to share with you a specific wish he made. 

Description of symptoms - Every 6 months a member would describe their symptoms in simple, straight-forward terms. So a reader could see the progression of a disease toward death. This would help sick people look ahead to the likely future of the problems they will face.

Would you like to start sharing updates here with this group?
 


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