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I've been working with my client now for six months, and when I initially started with her, she was fully independent and able to care for herself. Here we are today where every shift I leave I leave worried if she'll be okay. Her health has declined to a point that she lays helpless in a bed all day, unable to move even her arms. Medicaid feels she is too much of a risk to be home and tried to stop care with the company I work for. The company then went and had my client apply for hospice--which she was approved--so she could continue to live at home. She does NOT have round the clock care. In fact there are 12-14 hours a day where she's completely alone aside from her husband, who's incapable of caring for her beyond getting her a pudding from the fridge. I, along with her doctors, and insurances, feel she needs to be in a nursing home. However she and her husband refuse. I'm deathly afraid that one night when I leave, something will occur and she will not be able to get help. She is unable to push her life alert, or dial on a phone. Her voice is on a downward spiral and the most she can do is whisper a raspy word.


I've addressed my concerns with my company and the care manager told me "This is what SHE wants. It's your job to just make sure she's comfortable". But I can't do that when everything inside me is screaming that she's unsafe in her home and that my company is being money-hungry. I'm increasingly dejected by this situation on a daily basis--so much so that I'm wanting to leave my company. I don't want to work for someone who doesn't have the right values in mind. (Safety over money).


So basically, is there ANYTHING I can do whatsoever? Do I contact APS? Do I contact Medicaid/Medicare? I'm stuck.

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Halkrys, I know this is hard. But I think your company is behaving correctly, and I don't think it's about the money, either - or not in this instance anyway. They're putting autonomy ahead of safety, and however hard that may be to watch it is correct. That is your client's right.

You have done sterling work with this couple, and I would bet that they value you more perhaps than you realise. You sound upset that the company is telling you that your job is "just" to make her comfortable. But that's the most important thing anyone can do for her at this point! And you're doing it. Please don't leave!

Since this lady is declining so fast and is now in hospice care, it seems clear that her wish and her choice is to die at home. Many people express that wish. Not so many get it.

If her husband is able to get up and go to the fridge, then he's able to pick up the phone and call for help, yes? Perhaps you could discuss with your line manager how to advise him about when he *must* do that, and explain to him what he needs to look out for.

What exactly are you afraid might happen? What do you feel could be done for this lady in a nursing home that isn't being done in her own home?

What does seem very unfair is that your company is expecting you to work in this situation without giving you adequate support. Have you had training in end of life care? Have you worked previously with hospice teams? If not, talk to your manager - they owe you support to do the work they're asking you to cope with.

Bless you for your conscientiousness and your care for your client. Don't underestimate how important you are to her.
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halkrys, like so many caregivers, you have bonded to your patient. Please do not abandon them now. They know their time is short. They prefer to die sooner at home than be forced to suffer longer in a facility. If they die at home in their sleep, consider them blessed.
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If she's not been declared incompetent, she gets to make own poor choices, safe or not.

You, on the other hand, are a mandated reporter, yes? You've reported your concerns through the proper channels at your agency?

I would put my concerns about this case in writing to your agency, and ask for a letter from them documenting that you've expressed your concerns. That may force their hand.
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I agree with the above comments also. A good book to read to help you gain a perspective in this line of thinking is Being Mortal: Medicine and What Matters in the End, by Atul Gawande. An physician who had to support his father though his decline.
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Aside from talking to your Agency (employer) are you there when Hospice personnel are there? Have you expressed your concerns to the Hospice CNA or Nurse? There is always a Social Worker that is assigned to a family and I know with the Hospice I had and the one that I volunteer for they have what is called an Intra- disciplinary team meeting every week and they discuss each patient and family so I am sure this will be mentioned if it has not already been discussed.
After that you have done your job. While you are there the patient is ..Safe, Cared for and pain free (as is possible)...this is all you can do that is within your scope.
After you have exhausted all avenues to correct the situation as best as you can you have one other option. Ask your Supervisor to replace you as you can no longer watch what is happening. But I will tell you that you will probably see this again and again.
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Sounds like her husband can at least make her comfortable (getting things for her) and should be instructed who to call if he needs help, she is not alone. Bottom line she chose to stay home and your job is to see to her needs as instructed. There are laws your company has to abide by or you wouldn't have a company to work for. You sound like you are at the verge of reporting your concerns to a higher authority, all this will accomplish is more stress to this couple and their family in an already stressful situation.
Someone reported my mother shouldn't be living by herself in her senior complex because she was getting dementia and wandering the halls. What they didn't know was she was on a waiting list for AL, had a companion 3x a week and myself and a sister also going to visit every week. The case manager came to interview and said we were doing everything we should be and found nothing negligent. But because a case was opened he had to visit several more times to get the case closed. This was a lot of stress for my mom who didn't understand who this person was and why they were there.
Please just treat this woman as she wants to make her and her families last days as stress free as possible. Until you are in this situation you have no idea what a toll this takes on a person emotionally and physically.
God bless you for choosing this profession, we need many more like you.
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I feel that all the responses above are accurate and enlightening and in the best interest of the patient.
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Couldn't agree more. If it were up to me I'd have that book placed in every bedside drawer, like the Gideon Bible. Required reading not just for caregivers but for anyone who ever expects to get old.
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She and husband apparently prefer this arrangement. Everyone who crosses their path lets them know people care and they trust you will stay with them. If they have family checking in, the family is probably relieved to know she is where she wants to be. Both my parents used Hospice near the end and they remained home. Our family was spared the trauma of having to see someone spend days in nursing homes or hospitals. As long as all your supervisors, her doctors, and a social worker is aware, you are covered. Document your concerns, who you told, and when. Then allow the life and death cycle to take it's place.
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I should also mention that once someone is in Hospice they have made the decision to, if possible remain in the home and die there with out the "support" of IV's, feeding tubes, force feeding and other "advancements" The goal is pain free, surrounded by loved ones and in a comfortable environment. Hospice will place a patient in an "In-patient" unit if pain can not be controlled at home but that is usually very final stages or just until pain is under control.
So as long as the woman you care for is clean, cared for and relatively pain free that is the ultimate goal.
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