Old 09-23-2008, 07:04 PM #1 (permalink)
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Default Need Advice (about being labelled 'Complex Care')

Hi everybody, I am new to forum but have a couple questions (I'll provide the background details below). Specifically:

1. Has anyone had problems being deemed as a "Complex Care" patient and not being able to apply for residence at a nursing home?

2. If we need to take my dad home, where should we begin finding support help? (ie. PSWs vs RN/RPNs). Is it best to go with an agency or hire ourselves?



As for the details, my father was diagnosed in Sept 07 with ALS, he was doing fine up to 1 month ago when he was admitted to the hospital because of breathing problems. They found out that over the last few months he was retaining fluid slowly, we noticed it pretty quickly and brought it up to our Neuro, nurse practitioners, and even the doctor all of who just ignored this. Once admitted they put him on diuretics & the swelling went down, along the way he picked up an infection but now has been cleared of this.

The hospital now wants to discharge my father the only problem is they don't want to discharge him home but instead to a Complex Care Hospital,we were lead to believe this would be best for my father and the family, but when we went to visit these places it came quite apparent that this would not be a suitable place for him. When we went back to the hospital the staff there started to bully us into saying that this would be the only place 'suitable' for my father, we are going toe to toe with the adminstration with this and have told them we will take him home if this is the case, the only problem is the house is now not suitable for his return.

Any and all comments/advise would be soooo appreciated. thanks very much to everyone!
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Old 09-24-2008, 12:21 AM #2 (permalink)
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I am so sorry to here the way you are being treated! I can only speak as a PALS but I would encourage you to bring him home. I can't recommend whether you should look after him yourself or hire some caregivers. I don't know your situation or family dynamics to suggest anything. But I can share a little of my situation, I have a PEG , a Tracheostomy and vent and am confined to a wheelchair so I need 24/7 care and I am at home with my wife and some of my adult children taking all of my care. We do receive some funding which provides enough money to pay our son and a relief cargiver. I am not sure what funding is available where you are, contacting the ALS Association office should provide the information you need. There is no way I could go into a nursing home, and praise God I don't have to. It takes a commitment to look after a PALS so really think it through before making a decision. Ask all the questions you want and I will try to answer.

God Bless you and the decisions that face you!
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Old 09-24-2008, 02:48 PM #3 (permalink)
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Hi Doug. Have you contacted ALS Ontario? They might be able to give you some advice as to whether CCAC would help or Red Cross or March of Dimes although I know their wait list is 6 months in my area. In case you don't have the link it's www.alsont.ca There is a Hamilton Regional Mgr.

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Old 09-24-2008, 03:40 PM #4 (permalink)
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Thanks for the reply everybody, the hospital is looking to see what they can do to help my father and the family.
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Old 09-26-2008, 03:08 PM #5 (permalink)
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i have been labelled as a complex care case by the CCAC and local hospital. I have been refused by the local nursing homes in my community. In a nutshell, we are too much work to even live in today's society! Thankfully I have insurance for home 24/7 nursing services.
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Old 09-27-2008, 09:19 AM #6 (permalink)
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Hi Doug. Where I live there is only ONE nursing home able to handle medically complex cases. The other facilities are not equipped,trained, and do not have the "man power". I know it isn't fair.

Here, lots of people stay in the hospital for months and months looking for the nearest nursing home (skilled nursing facility) that can care for them. Keep searching. If you are the one calling around, I'd ask for the Director of Nursing or Executive Director of the facility. Sometimes if you get the wrong person on the phone, they won't understand and give you an incorrect answer. Make sure and list your Dads ABILITIES.

Home Health an option?
Hang in there and remember what happens to the squeeky wheel?
It gets fixed.
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Old 09-28-2008, 10:34 PM #7 (permalink)
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Default home not suitable

have told them we will take him home if this is the case, the only problem is the house is now not suitable for his return.

You said your home is not suitable in what ways?
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