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26 Apr 2013, 1:11 PM

Good to hear Sherri. The volunteer sounds like a very special match. One day at a time. 
Will you be heading out there any time soon? Using your holidays for caregiving? Tough to know when is best to go, I'm sure.
Colleen 
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Reply by SherriT
26 Apr 2013, 1:12 PM

I will be going with my daughter in August, unless I am needed earlier.  
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Reply by NatR
26 Apr 2013, 1:46 PM

Good morning Sherri, 

i missed your last post updating us, and am glad to hear that some easing of your mind has  happened - with at least comfortable relationships and some support for your Mom.  It really helps when a connection is made with front line support?

they become not only nursing and household support - but also comfort for the worries and fears - another essential part of comfort/palliative/hospice type care.  This will help ease your worries also!.

my best wishes to you as you continue to care, love and support your mom from a distance and I know that you will be with her when the time comes.

sincerely,
natR
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Reply by SherriT
08 Oct 2013, 1:47 AM

Hello,
i haven't been here in awhile and thought I would update.  My mom is in Wog and I am in ottawa. 6 weeks ago he unexpectedly had a heart attack and spent almost 6 weeks in the hospital.  During that time, she found out her Cetuximab hadn't even working and her cancer is spreading,  they told her she has maybe 8 months.  She took this very hard and was very depressed and anxious for weeks.  She has now gone home on the palliative home care program. She has health care aides visiting and a palliative nurse monitoring.  I went out the last 2 days she was in hospital and brought her home,  I stayed a few more days to help adjust to the hshare are schedule. She is on oxygen sometimes.  My dad is still leaving her alone at times and when he is home he is usually sleeping.  My mom is still anxious and cries easily. I am calling daily to monitor. 

I was able to be there when she signed the DNR and named her funeral home. Very sad stuff.  
I felt old about the visit and was able to help with quite a bit.  I plan to go back in 2-3 months depending on how She does.  I do feel more at ease now that she has the palliative cre.

thanks for listening,

sherri 
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Reply by Brayden
08 Oct 2013, 2:29 AM

Dear SherriT,
I have read all your postings and can feel the frustration of trying to manage things from such a distance. I am glad that you got a match with a Hospice volunteer here in Winnipeg. Based on my experience as a volunteer with this organization, I am confident that it will lighten the load for you. You could also ask for a volunteer to be matched with your father, if he is interested. Are you aware of the private hospice house in Winnipeg? It is a four bedroom place, Jocelyn House in St. Vital. Your volunteer would know all about it. My thoughts and prayers go with you.
Brayden 
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Reply by NatR
14 Oct 2013, 1:39 AM

Dear sherriT,

thank you you for updating,  I am glad Brayden was able to offer you some tangible support for your mom and I am so sorry that your dad has not been well.

its very difficult to keep an eye on your parents from a distance.  Sounds like things are as good as you can do for now.  It's hard to know your mom feels alone and anxious.  It's good you keep in daily touch.

my thoughts go out to you.  Please keep us updated as you are able.  Sincerely hoping that everything will fall into place as your parents need the support and care.

i know you will return when needed.

hang in there,
best wishes, NatR  
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Reply by SherriT
14 Oct 2013, 1:34 PM

Thanks for your responses Brayden and Nat. I am aware of the hospices in Wpg- Jocelyn and I think the Grace? We discussed with the palliative nurse the fact that she will unlikely be able to die at home as my dad couldn't cope. I am counting on the nurses guiding us as to when it's time.
She seems to have bad days where she struggles to breathe even with the oxygen. She is also very fatigued. My dad is still seeming to be in denial as he won't talk about her dying or anything like that. He is just carrying on as if everything is normal.

Thanks for your support.

Sherri
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02 Nov 2013, 9:50 PM

Hi Sherri,

Any updates? How are things going for your Mom? I hope the palliative nurse has been helpful.

Don't forget that you can ask our professional team if you have any specific questions about services and support. Just submit your question here Ask a Professional. Most of them practice in Winnipeg. 

I look forward to hearing from you.
Colleen 


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Reply by SherriT
03 Nov 2013, 2:03 AM

Thanks for asking Colleen,
My Mom is struggling along at home. She has daily nursing which has been great.  Because she was struggling with her breathing they started her on regular doses of Tylenil 3s, which while helping her breathing, is causing bad constipation.  Today the nurse gave her a suppository which helped. The care she is getting seems great except, I must say, for her coordinator who has never phoned or visited and has not returned the 3 messages I have left her. I had called to report missed visits and also to get an update on how the nurses feel she is doing but no response. I am a home care coordinator in ottawa and would never ignore calls like this. 
She also now has a hospital bed to help her breathing.  I am counting on the nurses to help us know when she will need to go to a hospice setting.  

I am coping as best as I can. I was in the ER last week with the worst migraine i have ever had and suspect its stress related.  

Sherri 
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03 Nov 2013, 3:07 AM

Glad to hear that your Mom is getting a little more support and comfort care.

Isn't it incredible how inconsistent home care can be. I, too, have been experiencing frustration in the inconsistency of the coordinator competency that my parents have been getting. Fortunately at the moment they have a great coordinator. 

Have you actually been able to tell the nurses that you are counting on them to let you know when the time is right for a hospice setting?

ER for a migraine??? That must have been a bad one. I sense that you wouldn't go to ER until things are really bad, so in most people's estimation it must have been off the "Richter scale". Wow. How long did it take to recover from that?

I hope you've found some mechanisms to take care of yourself. Thinking of you.
Good night.
Colleen
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