kleptoice
New member
- Joined
- Nov 4, 2017
- Messages
- 6
- Reason
- Loved one DX
- Diagnosis
- 03/2017
- Country
- US
- State
- California
- City
- San Jose
Hi guys,
I was wondering if any of you guys had any suggestions on extending a hospital stay. My dad is currently nearing the final stages. He is completely bedridden and has been on a trach for about six weeks.
After the trach was done, Kaiser sent him to a subacute facility. However, the care there was horrible. My dad complained of shortness of breath for over two weeks and the doctor there blamed it on his anxiety saying that he was just scared. None of the CNAs were gentle with my dad as well while cleaning him. I finally decide to send him to the ER for his shortness of breath even after the doctor and nurses tried their hardest to convince me not to, and turns out there was over 2500mL of liquid from his peg tube that was just stuck, not being digested.
It is really hard to trust a facility after the doctor there misdiagnosed my dad. He has expressed some interest in passing away because I know he is suffering, and I don't want him to spend his final days in a nursing home that can't even properly take care of him. It is just really difficult because he wants someone with him all the time, and I understand why because he can't speak or move his body so communication with nurses that are unfamiliar with him is very very difficult. My mom or I basically take turns watching over him and we will stay the night with him. The doctors and nurses at the facility kept giving us attitude because they were annoyed at us staying over all the time, but it is hard to trust them when my dad presses the call nurse button and it takes over 5 minutes for a nurse to come over. My dads neighbor in that room is also an ALS patient and once he adjusted his bed on his own and his trach tube came off loose when I was there, but the patient was unable to put the ventilator tube back on. The machine went off and rang for a solid five minutes. I did not know what was going on when I heard the machine ringing but I peek through his curtain and saw him almost turning blue with no sight of any nurses coming to respond to the beeping, so as I run to put it back on him, a nurse finally came in to check. It is absolutely terrifying to know that it took that long for a nurse to respond. What if that happened to my dad?
He has currently been at Kaiser for two weeks and I think that they are going to discharge him soon and I would like to know if anyone has any experience with getting proper care for a patient with ALS. We would love to take care of him at home but the social worker at kaiser said that someone would have to get trained with a ventilator and that it will take over a month to get certified, and I believe my dad will also get scared getting taken care of at home. If it helps, he is also a week and a half in of having c diff.
It's just difficult because I know he can't stay at Kaiser forever, but I can't trust him at any facility because of what I've seen firsthand. We currently are on Medicare but we are in the process of applying for Medical. I just don't want my dad to suffer in his final stages at a nursing facility.
Thank you
I was wondering if any of you guys had any suggestions on extending a hospital stay. My dad is currently nearing the final stages. He is completely bedridden and has been on a trach for about six weeks.
After the trach was done, Kaiser sent him to a subacute facility. However, the care there was horrible. My dad complained of shortness of breath for over two weeks and the doctor there blamed it on his anxiety saying that he was just scared. None of the CNAs were gentle with my dad as well while cleaning him. I finally decide to send him to the ER for his shortness of breath even after the doctor and nurses tried their hardest to convince me not to, and turns out there was over 2500mL of liquid from his peg tube that was just stuck, not being digested.
It is really hard to trust a facility after the doctor there misdiagnosed my dad. He has expressed some interest in passing away because I know he is suffering, and I don't want him to spend his final days in a nursing home that can't even properly take care of him. It is just really difficult because he wants someone with him all the time, and I understand why because he can't speak or move his body so communication with nurses that are unfamiliar with him is very very difficult. My mom or I basically take turns watching over him and we will stay the night with him. The doctors and nurses at the facility kept giving us attitude because they were annoyed at us staying over all the time, but it is hard to trust them when my dad presses the call nurse button and it takes over 5 minutes for a nurse to come over. My dads neighbor in that room is also an ALS patient and once he adjusted his bed on his own and his trach tube came off loose when I was there, but the patient was unable to put the ventilator tube back on. The machine went off and rang for a solid five minutes. I did not know what was going on when I heard the machine ringing but I peek through his curtain and saw him almost turning blue with no sight of any nurses coming to respond to the beeping, so as I run to put it back on him, a nurse finally came in to check. It is absolutely terrifying to know that it took that long for a nurse to respond. What if that happened to my dad?
He has currently been at Kaiser for two weeks and I think that they are going to discharge him soon and I would like to know if anyone has any experience with getting proper care for a patient with ALS. We would love to take care of him at home but the social worker at kaiser said that someone would have to get trained with a ventilator and that it will take over a month to get certified, and I believe my dad will also get scared getting taken care of at home. If it helps, he is also a week and a half in of having c diff.
It's just difficult because I know he can't stay at Kaiser forever, but I can't trust him at any facility because of what I've seen firsthand. We currently are on Medicare but we are in the process of applying for Medical. I just don't want my dad to suffer in his final stages at a nursing facility.
Thank you