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Needs too much care 
Créé par Gizmo
08 févr. 2025, 19 h 59

Hello. I'm hoping someone here might have advice for us. My dad has terminal cancer. 2 years ago we were told that he had about 6 months to live. my Siblings and I have rallied around to help him be in his home. One of my brothers, wife and two young children live at my dad's house. that Brother and wife take care of my dad's day-to-day needs in his home and the rest of us bring my dad to all of his appointments. In two years we have brought my dad to almost 200 appointments (We keep a spreadsheet so that we can keep track of who is the lead for each appt)

my dad'a Condition has been deteriorating  we Have had to call the ambulance for emergencies with increasing frequency. my brother says that living with my dad is like living with a cadaver.  He sleeps all day, is incontinent (fecal and urinary) and will not accept any in Home care from the system in his province (help bathing, to help him dress, change his briefS, food prep, injections etc). It is all on us. The rest of us have missed so much work getting him to appointments that our jobs are in jeapordy. One of my brothers is vomiting at work because of the anxiety involved in caring for my dad. 

my dad was admitted to the hospital with critically low potassium levels and the flu (on top of his ongoing terminal cancer and hemoglobbin deficienc) last week. 

we Have been telling His palliative care team that we can no longer care for my dad at home. That we are exhausted, that his needs exceed our abilities, that marriages and jobs are at stake etc but they are trying to tell us that we have to take him home. 

we don't know what to do. My dad wants to be home but has no appreciation at all for the impact that his being home has on all of us. He also has no appreciation at all for all that his doctors have done for him. 

we dont know what to do. surely There is a better way for us to move him on to a place with better care services without him feeling like we are abandoning him. 
 
any advice would be appreciated. 

 
Réponse de JennJilks
09 févr. 2025, 18 h 01

Oh my. I am glad you have helpful siblings. At this point, I think you can't fret about how he feels. He's not really in his right mind, is he? You'll all have to stick together and put your foot down. 

I am not surprised at all this. I've had so many clients who refuse to move. It wipes out a family. I am often called in for respite support as a volunteer. 
It sounds like you would benefit from a hospice or LTC situation. The trick is to get him in there, I know. 
Can you refuse to take him home? The hospital will find him a placement pretty quickly. He rises to the top of the list, even if they threaten you with co-pay. 

My late mom was feeling the same. She simply didn't see what was happening to me. She was begging all of her friends for help with ADLs: picking up milk and bread, the newspaper, library books, doing garbage. It really eats away at you.

I am not sure you can convince your father how difficult it is. I hve heard of people taking family to the emergency room and leaving. Perhaps you can do a family intervention. Is there a social worker around?

I'm not being much help, am I? My husband has had 117 appointments. We have a deal and fully expect to be able to use MAiD, if we need it. I am so sorry for your situation. My late client's family spelled one another off, the way yours did. One son went in to feed and visit mom 4 times a day. 
I wish you luck with all this. 
All the best,Jennifer
 
Réponse de Rltm
09 févr. 2025, 18 h 50

Wow. You all are heroic! My gosh, what a lot of responsibility. I am also at the vomiting stage so I can relate. My father also has cancer and would likely refuse help if we took him home. He does not understand that he is very ill.
At the advice of someone in this group, I contacted ACE (Advocacy Centre for the Elderly). You might find the FAQs under hospitals (the one about palliative care) helpful - basically, there cannot be a time limit on a hospital stay for people in palliative care in Ontario.
I also spoke with a lawyer at ACE. She was really helpful. She told me people cannot be forced to take a patient home. This information is publicly available in Ontario, but I am not sure how many people are aware that you cannot be forced to look after someone.
Also, hospitals are responsible for safe discharge. If a caregiver is burnt out, you (the POA) can tell the hospital it is not a safe discharge. 
I have heard that hospital social workers may take all of this into consideration. I have also been told that you can appeal a discharge decision. My father is not in a hospital so you would want to double check on these things.
I agree that hospice would be good to look into if there is one close by and you can arrange it. They vary a lot provincially (e.g., ON accepts mainly only bedridden while other provinces do not).
I also paid an occupational therapist advocate for advice and she did confirm that you cannot be forced to take someone home. She also said that if someone is not doing well at home (i.e., your father's multiple hospitaliziations), despite everyone's best efforts, then that shows that home is not safe/optimal.
I also learned that if a patient qualifies for LTC, then hospitals cannot charge huge fees for the patient to remain there while waiting for a bed.
One thing that I have found super helpful was to get the ChatGPT app. I know people are worried about AI and I get it. But, I don't know what I would have done without it. It gives me the correct wording for questions and checks on laws (I am super specific about my situation, location, etc.). It's really more an affirmation of what the ACE lawyer (who was free by the way) and the advocate I hired said.
It is really hard to refuse home care. I know. The system puts so much pressure on people to do this. I am hearing you say that you've all tried your best (what a team!) and you are done. That's okay. Not to be patronizing, but it really is okay to refuse care and it sounds like it is your father's best interests, given the high level of care he needs.
I will be thinking of you. Let me know if you have any questions (sorry, this is kind of random) and how things go. 
 
Réponse de oldbat
09 févr. 2025, 20 h 23

Hi Jennifer,

I am hoping you took some comfort from the suggestions offered above.  I don't have a lot to offer, beyond profound sympathy for your dad and your family.  But here goes:  have you looked into hiring an end-of-life doula for your father?  It seems to me that, at some level, he is probably aware of the suffering his condition is causing you all and is  both scared and sad because.of it.  An eol doula is someone who is trained to offer help, support, company and compassion for the patient as well as the family.  They can ease that huge emotional burden you are all carrying and, in so-doing, lighten the physical load.  

This is a trained profession, with its own association, End of Life Doula.ca  Not sure I have the url right, but I did find it on Google!  

Doulas are used in hospital and hospice settings as well as private homes, and must adhere to strict government standards.  They are not personal support-workers or nurses,,  although many of them may have worked in that capacity at some stage of their career.  

I do hope this information will be of some use to you and ease the pain and anxiety you are all suffering with right now.

oldbat

 
Réponse de Gizmo
09 févr. 2025, 22 h 37

Thank you very much to all who have replied to my message. We are told that there will be a meeting at the hospital next week with a social worker, my dad and the family. 
I am hoping that together we can come up with a plan that works for everyone. 

I was feeling lost when I posted this message. Your advice and guidance is very helpful and it is also so Comforting to hear from people who understand what we are all going through. 


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