What questions do I ask Hospice?

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I have been given 4 or 5 brochures for different Hospice Organizations. From the brochures, I picked one to start with. Now what? How do I really compare them? What do I ask? I don't want to call, but everyone (except my mother, the patient) is telling me to call.

My mother has lung cancer and will not do anything to help herself. She won't get out of her apartment, she has the staff bring her meals...She would probably have more time if she would move, but her lungs keep filling with fluid because she just lies around all day. She doesn't seem to get that she has a terminal illness even though her oncologist has told her to consider long term health care instead of assisted living and to call Hospice. He's told her there is too much scar tissue in her lung. She is not a candidate for surgery or more radiation and chemotherapy. She just asked, "When do I see Dr. _____ again? I'm having a hard time breathing". She saw him last week - at the hospital....

I'm the only person responsible for her. I have POA, but she is competent, so I don't know how much I can really do. Please give me some advice - again...

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There are some wonderful tips on here from the community. I'd add that word of mouth and references would help a lot. Many people volunteer to pass on their experience with a particular hospice. I know I would.
Warm wishes,
Carol
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Many people feel as you do. They don't want to take that step and call hospice because it's, well, hospice. And we all know what that means. It's a difficult step to take but I've never heard of anyone ever regretting it. It's a wonderful service.

Hospice will set your mom up with oxygen. For free. She will get your mom a hospital bed which will make caring for her easier. And that's free. They will come and out and assess what your needs are, what your mom's needs are, and put a care plan in place based on these needs. Would a bedside commode help? Do you need a bedpan? Do you need more wipes? What other devices and/or aids do you not have? Hospice will get them for you. They offer spiritual support if that is something your mom would be interested in. It's not over the top. A chaplain or minister comes out and just visits with your mom. Hospice also offers bath aides and they will come out a few times a week. For free. Hospice will also take over the medication and make sure you have everything you need.

In general, hospice will make you and your mom as comfortable as is humanly possible and give you the emotional support we don't always receive as caregivers. Some people feel that when they call hospice it's like pulling a trigger and that your mom will actually begin dying. That's not the case. Yes, hospice steps in at the end of life but their service can continue for months and months if necessary. Hospice just makes everything easier.

Once hospice enters the picture there are no more Dr. appointments. No more procedures. If your mom becomes very ill you call hospice first, not 911. Hospice ensures that dignity is maintained for the person. They're more than just an extra set of hands, it's an emotional support system and you can pick and choose what you want/need. They're used to people calling and not knowing what to ask and not understanding what the service entails. They are kind and knowledgeable and will walk you through the process. A social worker will come out to your house and talk to you and you'll sign some paperwork and then whatever you need, whatever you discussed, will be put into place immediately.

As a nurse I've worked hospice cases and I really enjoy them because the family is so stressed out that when we come in they can't believe that we do everything that we do and they're so grateful. We treat their loved one like royalty and the family can back off from the caregiving and just enjoy their loved one without the stress of being the 24/7 caregiver. I also had hospice for my dad and they were wonderful.

Your mom may be afraid of the word "hospice". This is very normal. It can also be called "palliative care" but if your mom is still on the ball she probably won't fall for that. Hospice means that your mom won't be receiving anymore aggressive treatment (you can put it like that to her) and they'll be coming over on a regular basis to make sure your mom is ok and feeling well. Believe me, when your mom becomes the center of so much individual attention she'll enjoy it. That's usually what happens. My dad loved the attention.

My advice is to call hospice. You won't regret it. And call early enough so that you and your mom can really benefit from it.
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I fully agree with comments. For carers of loved ones facing this situation we must remember that whilst this is a sad new experience for us. For the professional staff at a hospice they are expert in dealing with all the questions that you may have. My personal experience was also that they cared for the entire family and made my beloved dad's last few weeks at home with his family as calm as possible. I would also comment that we were never left feeling as if we hand handed over our responsibility to them and were as much as part of the care as we wanted to be.

I never thought we would have the strength to deal with this situation and a large part of us being able to do so was to these people

Whatever happens going forward I wish you light love and peace
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Exhaustedmomma, I agree with Eyerishlass, hospice will help you as much as your mom. Think about what help you want/need and talk to a few of the people who will be visiting your mom. That may help you get a feel for the service and the personalities that best fit your situation. How you describe your mom makes me wonder whether your mom has kind of given up already or a little depressed by the news and can't find any motivation. Have her friends, other family members, neighbors, etc. help her find moments to make the most of her final days. Funny movies, occasional outings to favorite places, talking about the best times, and such. Encourage her without cajoling. Are there grandkids? My dad's great grandson always brought a smile to his face so I tried to get them together when possible.

Best to you and your mom.
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CALL HOSPICE! They were invaluable in helping my family deal with my dad's terminal illness because they answered all of our questions. You see it is not only the patient that needs help, but YOU the care giver do as well because this journey is life changing. Hospice has resources that we do not know until they assess each of our individual situations. Call them, let them assess your personal situation, let them listen and guide and support you and your mom. We all deal in different ways and they sure helped my family where each of us was, my mom, my sisters and I, and that was a help to all of our extended family too. Emotions run high and they bring a sense of calm that is amazing. Blessings to you and your mom too.
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You hit it-she has a "terminal illness", so do we all. It is called life.
Death is not good or bad-it is inevitable...
I worked Hospice for a long time, as an R.N.

Moment to moment....It works for me, as an R.N. professionally & as a care giver now.
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Ask Hospice ANYTHING you wish to know. No thing is not OK to ask. Ask, ask & ask more.
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1) go on the Department of Health Services web site for your county and state and see when Hospices you were given were surveyed and how they compared
2) Make sure the Hospices are Medicare certified (if person is a Medicare beneficiary Medicare will pay for Hospice services)
3) Make sure Hospice has been surveyed by the Department of Health Services within 1-3 years
4) Ask if they are accredited through the Joint Commission http://www.jointcommission.org/ or through CHAP http://www.chapinc.org/ if they are receiving Medicare $ they MUST be accredited by one of these two organizations and the Hospice has to adhere to a set of standards set forth by Medicare through one of these two organizations.
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Loiscorrine90, people have been taken off hospice both because they or the family changed thir mind, & because they no longer qualified. The hospice we are using came out & did an evaluation, but Gram's dr. did sign off. I also get 25 hrs a week respite from themas well as a monthly visit from the social worker, weekly visit from the nurse, and weekly visit from the bath aide. The hospice will sit down & help you set up what works best for & your husband. Each hospice is a little different in what they offer ( my cousin doesn't get respite through the one they use for my aunt) so "interview" several. Good luck & take care of yourself!!!
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Loiscorrine90, people have been taken off hospice both because they or the family changed thir mind, & because they no longer qualified. The hospice we are using came out & did an evaluation, but Gram's dr. did sign off. I also get 25 hrs a week respite from themas well as a monthly visit from the social worker, weekly visit from the nurse, and weekly visit from the bath aide. The hospice will sit down & help you set up what works best for & your husband. Each hospice is a little different in what they offer ( my cousin doesn't get respite through the one they use for my aunt) so "interview" several. Good luck & take care of yourself!!!
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