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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
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I'm very sorry to hear about your dad and the poor care you have seen.

It doesn't take a month to get trained on a vent, but then it doesn't sound like your dad and/or you are comfortable with that idea. If you were trained, could you feel confident, could that transmit to him and is that the most desirable outcome? If so, I'd speak with the unit staff about getting trained and submitting a timetable on that to Kaiser as part of the discharge plan, which could delay discharge if done right.

If not, it is time to look at "better" post-acute/transitional care units in your area. You will be limited in selection by the vent. Also, his prognosis affects what you can do -- if this is really viewed as "end of life," hospice can treat him in a SNF (or at home), but is it? What is his prognosis as the doc sees it, and what does he want for himself? I assume this was discussed before the trach, but what is the current thinking?

I'm afraid that unavoidably you are going to have to choose between the fears you/he have about the home setting and the fears around a facility. You indicated that you are applying for Medicaid so I am assuming hiring an RN to train you/help you transition to home care in some fashion is not an option financially? There are more "medical" home care agencies that provide that kind of support, but apart from a transitional period (possibly), it will not be reimbursable.

It seems like the prognosis/his wishes is the first thing to sort out, really, in developing a plan.

Best,
Laurie
 
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