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Reply by JennJilks
24 Jan 2016, 2:56 PM
Kirstie, I had great results from reporting my dad's doctor to the College of Physicians and Surgeons. They were amazing. When they phone a doctor, the doctor jumps. They also went into the facility, and made improvements there in the long-term care, where dad died. They also improved the meds that nurses were giving him. Seriously, the nurses decided what dad needed, and they phoned the doctor, who gave an order. The doctors are the cause of a bad death: Rural palliative care and a good death.

Write everything down. Names, dates, what they did or didn't do.
In this day and age, we have a lot of research on palliative care, and they ignore a lot of it, as well. 
It will help another patient.  The Complaints Process - College of Physicians and ...
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Reply by Kirstie
24 Jan 2016, 3:15 PM
Unfortunately, I am in Quebec.
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Reply by NatR
24 Jan 2016, 3:19 PM
Now that complicates things - but if you use a computer or have a tablet or iPad you should be able to listen in on CBC app?

give it a try and let me know if that option works?
thanks 
natR
 
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Reply by Kirstie
24 Jan 2016, 7:36 PM
Sorry NatR - my post was meant more for JennJilks - she forwarded a link for the order of physicians (Ontario).

I am able to CBC Radio here.  Thank you for the information, both of you!
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Reply by TiredDaughter
14 Mar 2016, 7:32 AM
I didn't know what hospice and palliative care meant until recently. So far my experience left me with mixed feelings. My motheir was diagnosed with inoperable brain tumour last month and was moved from the cancer center where she was receiving the radiation treatment to the short term palliative care and then to the hospice last week. 

We didn't have cancer in our family before, so didn't know what glioma was and what to expect. I barely had the time to do some reading before making the decision, and can't say that I had high expectations, but I was hoping that the hospice won't be as bad as the ER and the hospital. Well, so far I think it's about the same: understaffed, everybody tired, nobody cares, no emotional support (actually if anything, it was more emotional distress as they were asking my mom the same questions every day while moving her around - until I asked 5th or 6th person doing the assessment, what's more important to them: that they won't get sued or she doesn't feel depressed when they keep explaining DNR clause to her, every day?)

So I've spent 7 days with her during this final ordeal (not to mention a crazy month before that), and decided to get some rest yesterday as I felt exhausted - both morally and physically. Our wonderful caregiver (whom I hired two weeks prior when I realized that I can't count on the hospital nurses and can't be there every day myself, so need help) went to visit my mom in the afternon - and found her all wet, her clothes soaked in urine. She changed and washed her, but my day off was ruined - and I can't sleep now at 3am, keep thinking what to do... Should I quit my job and hire 24 hour sitters to make sure that my mom's diapers are changed more than twice a day?!

I re-read a few websites, wondering what the words "comfort" and "dignity" that they keep repeating should mean (thinking that if I ever get diagnosed with the terminal illness myself, I'll try to end my life right away - there must be more dignity in suicide than in the so called end-of-life "care"...)
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Reply by NatR
14 Mar 2016, 2:04 PM
I am so very sad to read this is the case of your mothers end of life care

i am glad you wrote about it as we all need to understand how very lacking our hospice and hospital care is.

all I can say to you is - you are being a great daughter and I applaud you for hiring someone you can trust to fill in for you
although having said that - it's really difficult to understand why patients at end of life suffer needlessly

I do appreciate your story and I understand your pain.
whrn you mentioned the caregiver you hired finding your mom wet and stinking it reminded me of flying west to see my mom in a nursing home  which was brand new - beautiful shining facility and my moms room stinkinh of urine ( she had just been put to bed and obviously not washed or changed)

 keep posting please and I do get it- I do hear you
i am active on social media as an advocate for seniors and stories like this keep me focused on making end of life care better 

i send you my thoughts and appreciate your outstanding care and vigilence in looking after your mom 
we need to do better
hugs from my corner to yours
NatR 💕 
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Reply by KathCull_admin
14 Mar 2016, 2:56 PM
It makes me so sad to read your story TiredDaughter. I wish this were not so for you, your family and perhaps most importantly for your mother. 

Noting that you posted at 2:30 am - I can so understand your nickname. Would your work, life and financial circumstances allow you to take some time off work and with the hired caregiver try to ensure that you have time to spend with your mom + get much needed rest? Are there others in your family who could help support both your mum and you?

Would it be possible to speak with the manager of the hospice and tell her what you have experienced? I hesitate when I say that because I know how tired you are and how that is just one more thing to have to look after and it can take so much energy. Or can you and the caregiver keep notes - when your mother's care is not adequate? Also maybe when things go well - are there particular caregivers who provide optimum care?

Like NatR - I send you warm hugs from the middle of Canada.
Katherine 
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Reply by TiredDaughter
16 Mar 2016, 6:01 AM
Thank you so much for your support, NatR and KathCull!

Last two days have been great - we've got a young RN student who brightened the place and single-handedly made a huge difference. I think it's hard for people who work there for years to keep caring about dying strangers, but she brought the much-needed ideals and energy with her - I almost cried when she kept telling me "It's our job!" and didn't let me help out... She's off tomorrow, but I'll be there almost all day, and then she'll be back again...

I already switched working from full-time to part-time (taking a partial family medical leave - unpaid), spending two full days and 2-3 hours almost every day (except either Saturday or Sunday) with my mom. On partial days we agreed with the caregiver that she'll be coming before lunch and me before dinner - to help mom eat and then take her outsude in the wheelchair (her right arm and leg stopped working more than a month ago, so she needs help with everything...)

Since my mom is rather weak and mostly sleeps or watches TV, I thought that hiring someone to just sit there is a waste of money that I'd rather donate to the place after it's over (plus much more if I manage to keep my job...) I'm very understanding of their tiredness - and appreciative of what they're doing - so would never complain to the management. She's my mother, not theirs, so I see it as my responsibility first and foremost - for them it's just a job, I actually feel good when I'm with her...

She's been amazing during all this time, and I need to stay calm and supportive - which is much easier when they take care of her "physical needs"... 
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Reply by JennJilks
20 Mar 2016, 1:04 PM
I have never, ever heard anything negative about a hospice before this! 
That is shameful.

I hope you can complain to the Quebec College of Physicians about this doctor. You will help others. Keep notes and details.

I'm glad things are turning around for you. 
I find that sometimes what looks like apathy can mask frustration or burnout in professional caregivers.

Take care. You are over the worst, I believe. 

 
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Reply by KathCull_admin
14 Aug 2016, 7:57 PM
Hello
Tired Daughter it's been a few months since this thread was active. I was wondering how you were.

Katherine 
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