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Need Advice End of life care advisor?

Discussion in 'General Chat Forum' started by runnr, May 5, 2015.

  1. runnr

    runnr New Member

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    My dad is my mom's fulltime caregiver (alzheimers) but she's been able to get up and walk, and for the most part activities of daily living. Now she's in the hospital weaker than ever, can't stand up, won't eat, nothing particularly wrong that they can find. My dad was handed a 100 page book of homecare companies and told he needs to act quickly for when she's discharged, maybe in one or two days. Overwhelming.

    How do you get a hospital bed, how do you select nursing care, how do you bring someone home for possibly their last days?

    It's all very confusing and he's gotten no advice from peers yet because he hasn't been able to leave her to attend any caregiver support group or interview home care people.

    Anyone here been through this and know of a good resource? Something like a coach or advocate to walk thru this with him?

    Thanks
     
  2. frm

    frm New Member

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    The Loudoun County Area Agency on Aging might be able to help provide information - or may know of someone that can provide support and/or advice.

    20145 Ashbrook Pl Suite 170, Ashburn, VA 20147
    (703) 777-0257
     
  3. signifer

    signifer Member

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    I went through something like this with my dad about 2 years ago (but not around here).

    It sounds like you need (Medicare) hospice care; not all organizations deal with Medicare; if they don't, the costs are quite a bit higher.

    If you talk to someone who provides in-home hospice care, they can help get through the Medicare maze. There is some information here that might get you started: https://www.medicare.gov/Pubs/pdf/11361.pdf

    Good luck.
     
  4. jen

    jen New Member

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    The hospital should have a case manager/discharge planner to assist him. Sounds like they should have referred him to Hospice. They can meet with him and assist him while she is in the hospital in order to help get everything in place for when she returns home. Have him ask her nurse for a contact to help him.
     
  5. DanAngie

    DanAngie New Member

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    Call Capital Caring Hospice. They were nothing less than amazing helping us with my mother-in-law who had dementia. They even came to our house to discuss options. Send me a PM if you want to discuss further.
     
  6. runnr

    runnr New Member

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    Thank you! I think my dad is reluctant to use hospice bc she may live a while longer, who knows how long, with the right care. The case manager has been helpful, eventually identified a few care agencies out of the bunch to focus on, which is the guidance we were needing. I think ultimately a peer group to compare notes is going to help even more. This is hard, and anticipating it getting even harder is rough.
     
  7. DanAngie

    DanAngie New Member

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    It is really a difficult time and having just gone through it, my heart goes out to you. My mother in law was with Capital Caring for 18 months. They completely took over her case and managed it in her home. She had nurses visits 3 times a week, personal care 3 times a week and the hospice doctor came as needed. They also sent volunteers to sit with her and visit. Your Dad may not be there yet but it may be worth a call to talk with them and know what services they can provide when he is. I cannot say enough good things about them and the resources they provided to us. All the best to you and your family.
     
  8. signifer

    signifer Member

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    It's a difficult decision. However, the decision to go on hospice can be reversed. A doctor needs to believe the patient will probably die within 6 months for Medicare to pay for hospice care. Under hospice care, the intent is to allow the patient to die with dignity and pain free. As a result, Medicare won't cover heroic medical procedures but they will cover small medical costs. As I remember it, they gave my dad medicine for pneumonia under hospice. If it looks like the patient is getting better, then you can decide to go back to regular Medicare and get off of hospice.

    My (92 year old) dad was in a rehab facility and stopped getting better; when he stopped eating, we were told that was an indication that he was preparing to die. We were told he had a few weeks to live and hospice was recommended. After we made the decision to try hospice, the level of caring rose dramatically. The hospice people stepped in and took over dealing with the medical community and worked to help us get through the difficulties of a loved one dying. They visited and checked up on him, they provided pain medication as needed (not often in his case), they stepped in to ensure the facility did what they were supposed to, they provided us with psychological support, and other things along those lines (similar to what DanAngie described). This allowed us the freedom to spend the last days just being with him and not have to be additionally stressed dealing with idiotic bureaucracies.

    Wishing you the best.
     

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