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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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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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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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Unless she is incompetent, she has the right to refuse. If she wants to live with her husband, mind your own business and worry about your own life.
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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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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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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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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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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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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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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 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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You are unbelievably sweet and kind! Having worked elder care, I know there were many evenings when I'd leave and just not feel like everything was "right"---but I HAD to leave work and leave the worries behind. My client also had a loving family, albeit a bit clueless as to her condition.

If your client is in Hospice care, somebody should be checking in now and then, that is my only concern. For one thing, she is probably receiving some very strong pain meds and those have to be monitored.
Can you voice your concern to the husband? Sounds like he is maybe not there while you are (perhaps when you come, he leaves as he needs to get away? I don't know.)
Is she'd in hospice, comfortable and left to pass quietly on her own timeframe, then you must respect that. I can imagine this is breaking your heart, but this is a common situation.

When you say she is "unsafe" do you mean you feel she is neglected by her husband? Some people, at the end of life, don't want ANY fuss or drama. I sure don't. If her husband is actively hurting her or ignoring her, that's a different matter.
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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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We had the most wonderful caregiver (through an agency) who attended my mother a few hours a day, 5 days a week. She happened to live within walking distance and often 'checked in' evenings and weekends, on her own time, for 10 minutes or so. Her agency found out and read her the riot act, and told her to stop doing so, for legal and insurance reasons! Bless her heart, she wanted to make sure mom hadn't fallen on the floor....I would also like to say even if this poster's client is bed-bound and only has a semi-useless husband in the house at night, he does sound as if he is capable of phoning for help if needed. If the client is comfortable and wants to die in her home, so be it. (if she was in a nursing home, that doesn't mean she would be any better off, people die unattended there, too. Even if she was in a nursing home, it's not as if there is an attendent sitting by them 24/7 - and when it's her time to die, she will do so whether in her home with her husband in the next room, or in a facility, with the nurses station just down the hall. God bless you, you are a wonderful caring person, but be assured you are doing what you should be, and it is not up to you to make it 'better',
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Barbs point was good. I agree that u should bring it to the Hospice Nurse's attention if u haven't yet. From my understanding, someone has to be with the person 24/7. A family member or friend. Homecare Hospice is not there 24/7. If the husband is not competant to take care of his wife, they need to hire a nighttime nurse or someone to be there on off hours. It sounds like this lady's time is running out.
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End-of-life comfort care includes changing a diaper if soiled, offering water when the patient cannot reach it, bring it to their mouth, or call out to the next room.
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Yes, definitely contact aps and her insurance. You might also want to mention to aps that your company as you said yourself is money hungry and tell them what you just told us. If you feel they are not treating her right, you can always go to the place that's up over those kinds of places and report them. I personally would also start looking for another job. Have you ever considered maybe just doing your kind of thing on the side of a regular job that maybe even pays better? If you get a better paying job you can actually help people like your client on the side in your own time. This is something I would consider.

It would also be a very good idea to have the patient mentally evaluated to see whether or not she really is competent to keep making her own decisions. I think it's very possible she's probably wanting to die at home and I don't blame people for wanting to go in the comfort of home and in their own beds and not in an institution. Yes, it would probably be a very good idea to see if her illness can be treated. Sometimes common illnesses can be especially hard on the elderly and sometimes their bodies may not be able to fight it off like a younger person. A good bit of this may be a poor diet. If you have a poor diet, you can actually get very sick easily. When you get very sick, that's when you most need to start eating a better diet and start eating healthy. It would be a good idea to see if you can actually get some very healthy foods such as raw veggies and liquefy them in a blender and just make her a veggie juice to see if she starts getting any better, you may be surprised.

I'm not sure if you realize this, but people back in Bible days actually lived well into their advanced hundreds of years simply because they ate better than we do now. Back in Bible days people would go right on with their normal lives right up to the moment they got tired and they would lay down and just simply fall asleep right on that day. Yes, they were just simply lay down as anyone else and just go to sleep like normal. This was just how it was back in the Bible days when people lived well into their hundreds, several hundred years. We were originally designed to live much longer than we actually do but our bodies need the building blocks to do so
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She has not been declared incompetent so she gets to make the decisions about herself, inept as they may be.
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It is a very difficult decision to make as I struggle with this question every day.....stay in nursing home or bring Mom home with care....my compromise idea is bring her home for a few days & then go somewhere to distract & from there go back to Nursing home..... ? What do you think of this idea for your loved one?
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Carting your poor mother back and forth from the nursing home and then your home and then back to the nursing home as a 'compromise'? ARE YOU CRAZY?? I never heard of anything so cruel and messed up. Let the poor lady live out whatever short time she has left in PEACE.
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All such good answers as always from this forum :) My only other thoughts are talking with Hospice and asking why there isn't 24/7 care in the home for her. Yes, her husband is there but he is not capable of taking care of her needs except to make a phone call. My mom lives with me and she is in the later stages of dementia. I just had her moved from Medicare to Community Medicaid, and by doing that I was given 24/7 home health aides in the home. This has been a game changer for me, because I was covering all those hours. As the dementia declines, the care becomes more intense. I am in New York, you do not say what state you are in, but I know not every state has a program such as Community Medicaid which is Medicaid providing home health aides so the person can remain at home per their wishes. But perhaps there are benefits that she is entitled to but no one is taking the initiative to seek out those benefits. And then again, maybe someone has and the benefit for 24/7 care is not available.
As a caregiver you have to do what is right for you, follow your gut. Staying for the long term and helping this family would be an awesome outcome. Also, it never hurts to ask questions of others who are supplying care to the family. You never know what may come out of asking those questions.
I would not suggest calling APS, as was stated above, it ends up creating a lot of unneeded stress on the couple. It happened to me with my mom and I can say from personal experience, the call to APS was unwarranted. They came out several times, found nothing to be concerned about, and they closed the case.
Take care of yourself.
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