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My mom was recently placed on hospice due to a mass on her bladder. The mass has gotten bigger and she is bleeding when she urinates which is very frequent. She is no longer able to control her urine. I am stressed out and scared at the same time. The doctor said that she doesn't need to get anymore blood transfusions for the loss of blood because as soon as she gets one it will come back out. She is in pain, sleeping a lot and I am not prepared for this. I have never experienced this type of pain and despair. The doctor never said she had a specific amount of time, however hospice care will keep her comfortable. On top of that I am her care provider as she lives with me and I have to work and take care of a child. Can anyone offer any advice as to home health services for support other than the 1 hour a nurse can come out.

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Yes, Mom should never be in pain. That is the reason for Hospice.
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Hospice has volunteers that can sit with her for a while. They can not do any hands on care. (Some will also do light house work)
You can hire caregivers that will come in and care for her and do a few chores to help out.
At this point you probably do not need someone fully trained (like a CNA or Nurse) so the expense should not be that high for a "companion" that could do everything but give medications and change dressings. If however you hire privately, not through an agency, you can instruct someone to give medications. (most if not all agencies will prohibit anyone that is not a nurse from giving medications)
You could determine when you need the help that would be most convenient for you.
If your Mom has the funds this would come out of her funds. Also since you are a daughter legally you can get paid for the care you give your Mom. If this is going to be a permanent situation yo might want to write out a contract.

With Hospice you will also have a CNA that will come in a few times a week to bathe your Mom, order supplies they are usually there between 1 and 2 hours so you can work any hired caregivers around that schedule as well. When my Husband was on Hospice the days the CNA would come I had the paid caregivers some an hour later.

If your Mom's pain can not be controlled at home discuss with the Nurse about admitting her to the Hospice In-patient Unit for pain and symptom management. Once they find the right doses and combinations of medications if that is what it takes they will have her come home. But at least her discomfort will be taken care of.
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Why doesnt she qualify for Medicaid? Does she have assets that can be used to pay for caregivers?

She's in pain? Are you using the meds hospice provided?
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No she is never alone. I work from home but when I have a conference calls they take more than an hour. The SW will be here this afternoon and I will see what resources she may have that I can look into. She does not qualify for Medicaid and when I contacted Dept of Aging I was told that their programs were paid by Medicaid. Thank you for the responses it’s good to have supports. 🙏🏾
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JoAnn29 May 2019
Nice that u can work from home.
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You could contact your local agency for aging and ask them if they can point you to any resources.

Have you looked into respite in a facility?

This is such a hard time. ((((((((hugs))))))
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I’m so sorry you & your mom are going through this. It’s an incredibly difficult time. Have you met with hospice & gone over all of the resources they have?

They do not provide constant care. The nurse will come as necessary-in our experience they came once a week to check on my MIL. You can have the nurse come out more frequently if necessary. Hospice will provide a home health aide to bathe your mom & change her bedding-again you can choose how often. My MIL’s aide came out 3x a week. Hospice will provide 5 days of respite care in a facility. They should also have volunteers who will come visit/sit with your mom for brief periods.

As far as home care, is your mom on Medicaid? She may be able to get home caregivers through Medicaid. Hospice prefers someone to be with the patient at all times but they know that not everyone has family that is able to be there round the clock so they will work with you on that. It is not required that someone be with your mom 24/7. It is just preferred. If your mom or dad is a veteran, your mom might qualify for VA home care benefits.
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Does this mean Mom is alone? Because my understanding is with Home Hospice someone has to be there 24/7. I would ask the Hospice director about needing more help since u have to work.
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Someone doesn’t have to be there 24/7. It’s preferred but not a requirement.
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