Looking at hospice options?
I am wishing I had someone to go along with me to check out various hospice options in my area. What should I look for? Last year when I thought I was almost ready for it I wanted to die at home but now I am rethinking that. Maybe it will be better for me (caregiver and painwise) and my family if I use hospice care at the end. Do I ask my oncologist about a referral even though I don't need it just this minute? Any advice? I am going to search for a checklist. Kelly
Comments
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I am sorry you are facing this. While I'm a fellow Stage IV, I'm doing well enough right now that I'm not seriously exploring hospice. However, I have attended information workshops at the local senior center (I'm sure they thought I was there for my parents) just to gather information. Here is a link to a list of questions to ask when checking out places for hospice; http://www.hospicenet.org/html/questions.html
Does your health insurance have a case worker option? If so, I would contact the insurance company and have one assigned. I have only used mine a few times, but that would be the person who could answer whether you need a referral. I know my insurance covers hospice, so you might check your plan.
Hugs to you as you make these difficult decisions.
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Dear Kelly,
I'm an employee of Memorial Sloan-Kettering Cancer Center and am writing to share a few resources that may help guide you as you gather information about hospice.
National Cancer Institute:
http://www.cancer.gov/cancertopics/advancedcancer/page2
http://www.cancer.gov/cancertopics/factsheet/Support/hospice
American Cancer Society:
Caring Connections may also be a good resource for you: http://www.caringinfo.org/LivingWithAnIllness/Hospice.htm - this is a program of the National Hospice and Palliative Care Organization dedicated to improving care at the end of life. They also offer a helpline staffed by knowledgeable and compassionate people who can help answer your specific questions about hospice.
I hope this information is useful and wish you the best of luck as you face these difficult decisions about your future care. -Esther
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Thank you. I am wavering on staying home or going to hospice for the end but happily have a while yet to decide. Kelly
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Start the conversation with hospice now, before you need to make any decisions. I think many people wait too long and then aren't able to take advantage of everything hospice has to offer. I know that was the case with my mother. Her hospice had both in-home care and a facility and patients could go back and forth, if they wanted. If you have something like that in your area, you may not have to choose.
You will have to ask your oncologist for a referral to actually become a hospice patient, but you may not need that just to talk to them. It doesn't mean you have to stop treatment or that you are going anywhere anytime soon, but it is a great comfort to make that connection early, and to take advantage of everything they have to offer.
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Thank you (member of the club), I am slowly trying to get through my new to do list. I did a lot of planning almost three years ago when I started this but now feel the need for some changes and more specifics, like selecting the readings and hymns for my funeral Mass rather than just saying I want a funeral Mass. I thought I was doing that just for my mother but now she has died and I did feel comfort from the familiar rites and hope my boys will too.
I need to change parts of my will and my medical and legal power of attorney. I need to ask my brother if he is up to doing all that for me. I don't think I can ask him to go to hospice with me. I will talk with my new therapist and maybe my priest for ideas.
Thanks again just for hearing me and offering advice, Kelly
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Kellke,
I am my g/mother's caretaker as she is under Hospice care since Dec 7th. She had BC in 1985 and it is now in the bones, liver and possibly in brain. In November she told me she didn't want to be alone and in December when the dr's told me the update, I decided to have her transferred to my home. I am her POA/HS and granddaughter. The staff at hospice have become my friends and as a caretaker they have been a godsend to me.
The Caring Connections is a good resource for you: http://www.caringinfo.org/LivingWithAnIllness/Hospice.htm - this is a program of the National Hospice and Palliative Care Organization dedicated to improving care at the end of life. They also offer a helpline staffed by knowledgeable and compassionate people who can help answer your specific questions about hospice.
If you want your brother as your POA, he really needs to be there and get an understanding as to what resources the Hospice program can do to help him... Mostly I have found that all I need to do is 'request' and somehow it happens....which I'm very thankful!
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Kellke, I've gone through this myself in this last year. I'm in Canada so I'm not sure things will be the same where you are, but my family doctor referred me to hospice. Because I still have young children, I really didn't want to burden my family with my illness. Hospice makes sure that doesn't happen. They deliver my meds, send a nurse once a week in case I have questions and to do I.V's, provide meals if I ask and so on. Please keep in mind, just because you sign up for it doesn't necessarily mean it's "curtains" or anything. They just make things easier....they take away from the stress of having to figure everything out for yourself. Good luck with whatever you choose.
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And I forgot to mention, they're not just there for you, they help the entire family. They make sure nobody in your family has to be your "caregiver". That's the best part for me. It's made a world of difference for my family, knowing they can continue on as normal and all of my needs are met.....and as an extra bonus they will send someone to clean my house if necessary (I guess they instinctively know husbands aren't the best at it!)
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Both of my parents used hospice and I can't say enough good things for their support. There are a lot of options, so you need to find out what is available in your area. With my mom, we had my sister and I and my two aunts and my dad at home so we had the nurse come a couple of times a week. They were available via phone 24/7 and answered questions from all of us. With my dad, we used the service within the hospital. And I had an uncle who went to their facility. This was all in Pittsburgh.
In my mom's case - 20 years ago, I wish we had engaged them earlier. Mostly it helped the caregivers. But they were always there for whatever we needed.
As Monica said above, talking to the hospice and palliative care folks can be really helpful. I wish this was not something you had to even consider, but considering it now can be good. My mom also had a great priest who came to visit her in the middle of the night if needed.
I can't presume to know anything of what you're going through, but I have found that in these situations sometimes people are waiting to help, but afraid to upset you. As Gracie said too, just organizing it doesn't mean you need it, but it can be a huge relief.
Best wishes and strength.
E. -
My brother died last year of a brain tumor at home. We had a HORRIBLE experience with Hospice.....the scars to my family are irreversable.
Choose a NOT FOR PROFIT hospice, and one with more than a bachelor's degree in social work to counsel family members and guide you through the process. Look for at least a Master.s level in family counseling or general counseling.
If anyone is in North Alabama, and is looking into hospice, please PM me and I will tell you which organization to avoid at all costs.
Love to all.......
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Kellke, I am a hospice nurse and I truly believe it is better to start the process early on. You get to develop a relationship with the nurses, aids, social worker and chaplain that will be involved. If you have children working with a breavement counselor early on may be to your advantage. One thing to remember about hospice is they are not all created equal. Some hospices will not let you go to the hospital for anything others will, some offer palliative care which means that you can be followed by a team no matter where you are health wise In the disease trajectory and then transition to hospice care when it it is time. Palliative care allows you to have a team similar to the hospice team, but you can still be seeking curative care, if and when yèou decide you no longer want to seek curative treatment then your transition to hospice is smooth and seamless you may even have the same nurse. I believe hospice services allow families to not live with regret over would of, could of should of. It also takes stree off of the patient knowing there family will not be alone and the patient will be cared forexperience, kidness and compassion. I often say I have the best job in the world, I have witnessed some ofnthe most extrodinary passings that 1) have confirmed my faith that there is something next, 2) God doesnt let people die alone. 3) That in the worst of situations hospice families are at their best. I am on my second round with BC and know that if and when I neednto make a choice about my final care hospice will definitely be a part of it If you have any questions that I can answer please let me know.
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I can't say enough good things about hospice. My DA had hospice the last three weeks of her life and it was very comforting, not only for her, because she was kept pain free, but also for the family who was gathered around her bedside when she peacefully passed.
I would not hesitate to have hospice when I need it. I would prefer that to ongoing treatment that will do nothing to give me QOL.
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