What can I expect from hospice?

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nona

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I'm approaching the six year mark and I'm emotionally and physically exhausted. I am considering going on hospice in part because I have it in my head that there will be more assistance for my caregivers and support for a catheter to reduce transfers. Transfers are painful for me and risky for my posse. I'm trying to decide if I should go on hospice or try to find a whole new caregiving team, or some combination of the two. I use a bipap at night but my breathing is fine in the daytime when I'm upright in my chair. I have also heard that Medicare won't cover my enteral formula on hospice. What about Nuedexta?
 

Nikki J

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My understanding is that hospice replaces medicare coverage for care of the condition that qualifies you for hospice. First look for a non profit hospice. They generally cover comfort measures but the specifics vary from hospice to hospice. I would argue nuedexta is a comfort medication but as you know it is expensive. They get a lump sum to care for you so expensive medicines and therapies are problematic. You can ( and should) interview hospice providers. I think you can change once during the certification period if it isn’t a good fit and you can always go off hospice if you choose

how much caregiving support are you expecting? You would get the hospice nurse as needed and an aide but in the non acute hospice phase I think that is limited to an hour or 2. There may also be scheduling issues- they will usually come at whatever time they have free so you may find it is not a time that works for you. These are questions to ask during your interview but bear in mind they may paint a rosy picture. This is not to say hospice is not right for you just that you need to find out if your needs will be met. Make a list of priorities
 

JimInVA

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Jessie,

Darcey entered hospice care when she was ready to call it quits. On their very first visit, the hospice team inserted a catheter for her. That single item immediately improved her quality of life. She was grateful beyond words. I'm sorry to hear that transfers are a problem and painful for you. That simply should not be. If we knew more about how that is being accomplished, we might be able to offer some ideas that might improve that situation.

Every hospice is a bit different in regards to what caregiving might be available. And not just available, but for what they will and will not do. For us, hospice caregiver help was of no help. But ask... let them know what your needs are and see what they can accommodate.

Once in hospice, we had no additional charges. Not for supplies, nurse visits, BiPAP, Cough Assist, enteral supplies or medicines. All of it was covered under hospice.

I hope you find that which works best for you. I know how challenging that can be.

My best...

Jim
 
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