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I have been sick for over nine months and the doctors cannot get a diagnosis. I had a second bone marrow biopsy this week. While the procedure was being done my honey stayed home with our daughter and husband. We've always gone together and he couldn't understand that two people couldn't wait for the procedure as it took from 4.5 hours. At home he put his head down and cried in his hands over and over.


He's not able to identify objects and it's difficult for him to do anything. I'm in a wheelchair and have successfully been able to take care of him. I do have someone to come every two weeks for cleaning the house. I had the doctor check for UTI but it was okay. I purposely haven't told anyone yet except on this forum. I believe they might come for a short time only to be called back later.


I was encouraged today by reading an inspirational devotion "My flesh and my heart may fail but God is the strength of my heart." As each of you travel down this road of dementia with your loved one or you are a caregiver - may you continue forward. Thank you for your patience and devotion to our loved ones. May God strengthen each one.

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Doctors don't really "call in hospice" but rather they recommend it for end of life care if death is expected within six months and the patient no longer wishes treatment toward cure, but comfort care primarily. Then hospice does the interview with patient and or family. Your husband will (normally and usually) be interviewed WITH YOU for the intake. I would make it clear to Hospice your situation. That you are not here looking at an immediate end of life situation, but that he is clearly ill and in need of care and you both need the extra care, that you are open to re evaluation. Hospice is paid for by medicare.
I am uncertain why the doctor chose hospice. You do not say your husband is expected to have no more than six months to live, nor that you and he would refuse treatment for illness. That is the mandate of hospice. Sometimes MDs will order it and kind of "fudge" the diagnosis so they can get extra help. Is that what they have done.
It is, if extra help is honestly the goal here, crucial to be somewhat honest about that. You don't want a situation where your husband is overmedicated. While hospice is wonderful, wonderful, wonderful in my opinion, their vocation is to RELIEVE pain and distress even if that relief may hasten death. That isn't a situation you may want now.
So honesty is the best answer, and you need to be in on the interview as your husband depends on you as his health care advocate.
I am so very sorry about your own situation and I hope your tests have a good outcome. If they do not I hope you will consider that you may not continue to care for your husband without his placement or without a good deal of inhome help, as hospice doesn't give much. Several baths a week, the support of speaking with clergy, with social worker, with nursing, but not a lot of help in the home.
My heart goes out to you, thoughts and best wishes with you as you face down this trial.
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My mother's doctor recommended Hospice for "extra eyes" and Palliative Care for my mother.

This step, while handled by her Hospice, is not for the "death is coming in six months" category. It just means that we have asked for no life-prolonging treatments.

It gets us a Doctor who pays close attention to my mother, a nurse that visits her once a week, and a bath aide who gives her a shower, changes her bed linen, and treats my mother like gold.

Perhaps this is the level of care that your husband may need.

Hospice can tell you what kinds of services that your husband qualifies for at this stage.

Best wishes to you!
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Your problem is that the family does most of the care when Hospice is brought in. They are not caregivers. A nurse will evaluate using Medicare criteria for Hospice. You will need to ask how often and how long you can have an aide. Where I live its 3x a week for an hour. You need to request a head of time for a longer time. One poster said Hospice gave her an aide for 4 hours. I think it all depends on the agency and how many aides they have available.

Can you maybe place him in an AL or MC until you are doing better? The stress caring for him may slow your progress down.
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Hospice means that the medical professionals will come to him rather than you having to take him to the doctor. That alone is an enormous help, plus you have an extra set of eyes on him who can evaluate what's going on with him. You also get free medical equipment he might need like wheelchair, hospital bed, or commode.

What hospice does not do is NOT treat what ails him. The goal is comfort, so if he had a UTI, they'd treat it. (My mother developed gout from drinking Ensure, and that was treated and she also received daily wound care.) If he had cancer and wanted chemo or broke a hip and needed surgery, then he'd have to go off hospice to be treated because that's a whole other thing. Hospice is largely about staying out of hospitals.

The doctor's recommendation for hospice might have been done to make things easier on you until you get your own health issues sorted out.
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People die when the body is worn out and it can't regenerate any more. There is no need for a definite diagnosis. Furthermore, even a precise diagnosis won't help because the condition will be untreatable. When the time is up, there is nothing else to do. His doctor knows that his end is near, even is there is no definite diagnosis from the biopsy.
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To answer your specific question, yes, your husband will be evaluated FIRST by hospice, and they will decide if he meets their criteria before they take him on as a patient. His doctor has only recommended he be evaluated, that's all. My mother had a friend who was on hospice for almost 3 YEARS before she finally passed away. So, just because your husband may qualify for hospice care now does not necessarily mean he will pass away within 6 months; just that he's qualified to receive extra services by the hospice team. I have found the extra help and services to be wonderful. My mother lives in a Memory Care AL and has hospice coming in to assist her in ADDITION to her regular Nurse Practitioner who sees her weekly. The work in tandem together to give her the best care w/o sending her back & forth to the hospital where all they want to deal with is Covid patients right now ANYWAY.

Wishing you the best of luck with all that you have on your plate right now. God bless you.
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Thank you to each one who responded. The information is valuable. His dementia is bad enough he can't answer any questions and sometimes he is able to follow directions. But he is ambulatory, still eating, just having difficult time with simple tasks. He's not found the bathroom several times and so he just went where he was standing. I put tape on the light switch in the hall bath he uses and so far that has solved that problem. Our primary doctor believes I have cancer based on the past seven months. The Cancer Center I've been going to says it is a mystery. I believe in taking a day at a time. Phew, I'm relieved that he's not necessarily going to die within six months. The doctor told me never to call 911 when he is accepted in this program. So what happens if he falls and breaks a bone? He said to call the nurse who would then call 911. Again, thanks for taking time to write me.
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lealonnie1 Dec 2021
If your DH falls & breaks a bone where he needs it to be set, hospice will have him sent to the hospital for treatment. You'd let THEM know and go from there; the doctor is right. You don't call 911, you call hospice. It's also good to know that hospice can be fired at any time if you feel you want DH to go to the hospital and be admitted; the purpose of hospice is to AVOID unnecessary hospital stays and poking/prodding/testing and taking superhuman efforts to keep a dementia sufferer alive longer; dementia is a horrible affliction and to extend their lives is not a merciful thing, really. But it's all up to you as his POA. Hospice is not there to 'kill' him, just to help him suffer LESS in general. If he gets accepted into the hospice program, get their handbook and ask questions; that's your best bet.
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