Does in-home hospice care require a caregiver? I live in an independent living facility.

Does hospice require that a person have a caregiver to start hospice services? My sister can still perform activities of daily living right now. She is in an independent living facility.

I used the at-home service provided by The Connecticut Hospice for the last year of my mother's life. Not only did her nurse come regularly once a week but also whenever I needed him to come because of a question or something happening. They also provided 2 hours a day of CNA care and a social worker came about weekly to talk to me. They also had a wellness program for both care recipients and caregivers at their on site facility. My only complaint is that their bereavement department is not very good and was not very responsive to my grief. No place is perfect but they are awesome for what I needed them to be - my mother's hospice.

(As an aside, I actually called a different hospice not quite as local to me when I really needed someone to talk to and that person told me I could call whenever I needed to.)

My husband is 82 and has COPD. I invited Hospice to come as much for me as for him. As things stand now, he enjoys a high quality of life. His last flare up was over a year ago. As his chief cook and bottle washer I want to make sure he stays as well as possible for as long as possible. I was concerned as much for myself as for him; I feel I need support in looking after him. The RN who came was delighted with our situation and praised us for being proactive. When my sisters in law received draconian diagnoses no one thought it was important to have Hospice, including the health professionals around us. I insisted on having Hospice care and they were with us through thick and thin. I am eternally grateful for their help and care. We got kudos for having an entry ramp into our home, for having accessibility to the walk in shower, an air filter and no rugs to trip us. We got extra points for making sure my husband has clean, filtered drinking water, eats a vegetable rich diet, gets adequate sleep and activity. I felt immense relief for having engaged these folks early on because I have confidence that they will be my partner as his disease progresses. In my mind, it's the patient and the family who will know when it is time to engage the help Hospice can be.

My brother was put in hospice. his son said that two doctors had gotten together and suggested it was time for him to go to hospice, but come to find out it wasn't a doctor it was a nurse practitioner can they make that decision?

GA Hospice has been a lifesaver for me. Helping my Husband with great care and treatment during his illness.

Thank you BritChris. I feel that I let my father down. I let those vultures of that death-driven hospice suck me into their deceptive hospice residence. The nurse said my father was in pain and moaning. Looking back I see that he knew he was being drugged. A healthy person would have died in 10 days if they were sedated and not able to drink or eat. This is very disturbing that this happened to my father. This happens a lot in the USA. I regret the day that I called this hospice. I wish I could have seen clearly what they were doing to my father and been able to get him out of there and treated with appropriate healthcare. Healthcare that is pro-life, respectful and dignified. I am so sorry Dad. I miss and love you!

I am so sorry for your loss. I can understand your bitterness towards hospice. The one I use provides only home care and I control the meds. That perhaps makes a difference. Too, I got into the program very early when my husband was still ambulatory but limited. Again, I am sorry at the way things turned out for you.

I guess I cannot get past how my father and his two daughters were treated by a hospice with a residence. He was taken straight to the residence, we thought the nurse was knowledgeable and that he would be taken care of and leave for home on Sunday. He was admitted on a Friday. No, they did not tell him or his daughters that they were planning for his death and proceeded to drug him to death. He died Sunday night, 9 days later. They lied to us the whole time. He should never have been admitted. He should have gone to acute care hospital. He had heart disease. Please protect your elders! Don't have the regret that I did not do right by my father. The hospice did what they wanted. Their philosophy was pure death. No celebrate life as they advertise.

Can a person be under hospice and not be dying? Yes - sort of. There are two levels of hospice care. One is end of life care that is for six months but can be extended. That is when death is imminent. As I posted earlier, my husband has already been under it for five months. He may well meet the six month "deadline" but not necessarily. All hospice has to prove to satisfy Medicare is that he is still under decline.
When we applied to hospice we expected him to be under palliative care which is a three year program which offers less assistance but does send a RN once a week and a bath aide (not sure how often). My husband has had chronic pain almost all his life and his tolerance for opioids was significant and hospice felt it could be managed better under their end of life program. Let hospice make their decision based on your needs. It is only a title. They are not going to toss my husband to the wolves if he is still alive after six months.
It has been mentioned previously but it is important enough to say again. Go with a not for profit hospice and you will be able to trust them. Our hospice has been super, generous with their supplies and time. They are available 24 hours a day and I've had to call them at unusual times.
Good luck in your decision. It is tough going with hospice but it really is not as final as people imagine. Two of my caregivers were upset when I chose hospice because they expected him to die immediately. Nothing is further from the truth. Hospice makes sure my husband's pain is controlled but they do not force me to keep him doped up, etc. My caregivers have totally changed their attitude as they have witnessed caring and professional attitudes from the hospice staff.

I'm sorry but can a person be on Hospice & not be dying? ?????? Just needs more assistance???

My husband, with PD and Lewy Body Dementia, has been under hospice for five months. He is now bed-ridden but is still holding his own. The decision to go under hospice care came when I took him to see his cardiologist. It took me 3 1/2 hours to get him there as he changed clothes four times and had to walk around the house and see how they felt. When I told the cardiologist that I saw no point in seeing her again as we would not pursue surgery even if it were needed. At that point she suggested hospice and she said she welcomed the opportunity to do that as it is not an option given to physicians as much as it should be. I have been very pleased with the care my husband has received. The staff has worked with me to control his pain. It was a little bit frightening at first as you have to basically sign away your own physicians and rely on hospice. A physician is assigned to us but we have never met him. We deal with a RN case manager who prescribes the meds we need. Narcotics are recommended and prescribed through the physician. We have had no problem getting all the medicine my husband needs. I feel like we joined hospice at the right time and even if he lives beyond six months hospice will be there for us as my husband continues to decline.

The Connecticut Hospice of Branford CT was the first hospice in the USA. They are a non-profit and so are very diligent and not money grubbing jerks. They were wonderful, providing staff and equipment quickly and compassionately. They have a wellness program for patients and caregivers. My mother had advanced Alzheimers and I was keeping her home. I could go on with detsils, but I need to get going. If anyone wants to know how good hospice functions, theses guys are it.

Please protect your elders from rogue hospice agencies. They are out there. Look at the original definition of hospice. Don't let the representatives fill you with confusion. Hospice diagnosis. What is and is not covered. Grabbing your family member and making them inpatient right away! Only to find out the next day they are in a drug coma! Tons of this is happening in USA! Please understand that hospice in the USA is not pro-life and does not celebrate life. Stay within the health care system. Say No to hospice!

Some hospices are great. The problem seems to be when the patient starts to get better instead of "conveniently" dying. The paperwork they have you sign says that you can leave hospice at any time, but that you also agree you won't request "curative" treatment. This can mean your loved one dies of a simple-to-treat pneumonia many months earlier than they would have been expected to die of Alzheimer's or cancer that was their main terminal illness (the care facility owner was a nurse, and was BEGGING for them to provide simple antibiotic - they finally did as an "pain relieving" measure, but it was too late & the lady died). Another friend had to fight for over a month to get off hospice - he kept demanding to be off hospice once it was clear he was recovering, and the skilled nursing kept ignoring him (they liked the "extras" that were being provided by hospice, saving them money). He also had to fight to get out of bed ("He'd like to get up in his wheelchair", "well, you know he's on hospice" they would say, trying to discourage us from demanding he be allowed out of bed. Over a year later he's still around, despite their best efforts to nudge an unprofitable patient along)

Not all hospices are created equally. Some aspects are a blessing and relief, making it all the more apparent which elements are lacking.
Having counseling during for the caregivers, especially those of us whom the majority of caregiving, if not all falls upon while other members twiddle their thumbs would be a huge improvement. Some hospice organizations do offer it. Wish mine did. It's flavored the rest of the experience like a moldy piece of bread that you ate unintentionally and no matter what sticks with you. Not good. Maybe if I crack they'll get it. Right now it feels like that is exactly their goal.
Highly recommend to Make sure they include counseling for the family before your LO passes so they can truly have the peaceful transition hospice is supposed to be about.

My mom had a stroke. She seemed to be in the last stages of life. Hospice came a.couple of times a week to bath her change the sheets and also had a doctor cime to see he. They provided the bed pads and adult underware. The medicine was sel7vered to the door. Nurses were also provided. They assigned a volenter to sit with mom to give me time toget away once in a while. Mom started to get better and she ran them off telling the social worker she did not want any of them comming around. She was not quite well enough that i did not have to get up numerous times with her day and night. Mom is now able to go to the bathroim by herself . During the time right after the stroke i dont know how i would have survived with them. I think Hospuce is wonderful.

@ jerico,
near the end of my mothers life, a week ago, she could feel her body dying and was clamoring to climb out of bed. in hindsight she was trying to get away from her dying body . . her digestive system had shut down and sepsis was poisoning her. upon seeing the first signs of terminal agitation hospice started giving her liquids morphine and ativan. she lost conciousness and died in a matter of hours. what would be the point of letting her suffer for several days as more organs and systems shut down? they helped mom get out of that dying body and im fine with it..

hospice is just what the y say they are end of life care if you want your love one to get out of your life sooner so you can free of their burden then put them in a nursing home or hospice because they have means of cutting their live short unbeknown to all the family members all it takes is for the quardian to say give them the shot and in 45 minutes they are gone know this for a true fact when the doctor had said my father had a least 4 days left then all of a sudden he was gone in 4 hrs after a conversation was overheard when does the shot kick in the nurse said in about 45 minutes and sure enough in 45 minutes he was gone so hospice knows how to ease their pain alright and when I worked in a nursing home this goes on all the time the superisore got fired cause she tried to stop it kids its tough but love your parents enough to take care of them in their last few day and you won,t have any haunting guilt trips

Not all Doctors will refer you to hospice. I care for a 98 year old with CHF and ALZ to name a few. I had a nurse that came to the house once a week because she was in the hospital due to the CHF. And she agreed with me that it was time for her to have hospice come in instead of them because she is not going to get better she is going to continually get worse. I had to bring it up to him again about needing hospice for her and for myself the caregiver! He still didn't want to he kept saying it was a death sentence to go to hospice. He even has her daughter thinking the same way. When in fact they are not a death sentence, they are hope and help!! I think this doctor just wanted me to bring her back and forth to him so he could bill medicare for seeing and treating her. He kept saying they would take her off all her meds and then for sure she would die. Hospice in no way will take her off all her meds unless they feel she is getting no benefit from them and the caregiver and family also need to agree. So don't wait till the doctor wants to put them with hospice, if you really feel that it is the time to have such services then you need to do the talking. And if the doctor is un willing to do so then call Hospice yourself and they will let you know if this is the right time for them to have this service. Grandma is slowly going down hill, she just might go past 6 months. But they can still be with hospice even after the 6 months. Her BP goes way up and down for no reason, her oxygen goes up and down too. There are days she has no energy or even cares to get dressed. And then there are days she feels pretty darn good! She has lost another 6 pounds in just a couple of weeks and is now 118lbs, from 140lbs when she first came to live with me. Most of this weight loss has been over the past 6 months. My MIL still thinks that this (hospice) is too good to be true, and still has that feeling that it is a death sentence. Sometimes I think she is the one who has lost all reality, this woman will not be here forever and she is so lucky to have her for as long as she has! And giving her drugs and the such just to keep her alive when the quality of life for her is just about nothing is just so wrong! I live with this woman and hear her cry that nobody cares (my MIL only sees her maybe once a week if were lucky) and asks why am I still here. Nobody should live this long and at times she tells me to just kill her or that she just wants to die! She can't walk without help, eat, use the bathroom, get dressed. Her mind is not real good anymore either. And the worst part is she know that!! Small walks take the best of her, and she sleeps most of the time. I know in my heart and from past experience that hospice is the best thing for her at this time in her life. It is in no way a death sentence!! Its a way to leave this world in dignity, with the best care and with all the special equipment that she may need. And it is the best way to help me care for her all the way around!

In response to the previoous post, the Hospice-By-The-Sea in Boca Raton, Florida DOES offer caregiver support and family counseling BEFORE death. My parents refused this service because they did not believe in having pschological counseling for anything ever. Had I been able to convince them to try, it would have saved our entire family from exploding into pschological trauma, financial, legal, and property chaos, and grudges that lasted for decades after my parents' deaths.

Hospice was a life saver for me. My 90 year old mother was in a nursing home because of dementia and then diagnosed with brain cancer. They came the day the physician sent in the order. My only suggestion for improving hospice services would be a support group for the caregivers when the loved one/patient is still alive. Hospice offers group counseling after the death of the patient. I think it would be helpful to have somebody else to talk to who is also "in the middle of it" with you. I am an only child of a widowed mother and had no one to help me with decisions.

My mother has recently started visiting the hospice as a day patient. It is Nightingale House in Wrexham, UK. I cannot praise them enough. She does not want to stay in there 'yet' because she thinks that you go there to die - and she says she is not ready. She is dying, she has bowel cancer and it it in its latter stages. The people in the hospice are really kind, she has her hair set and nails done (she is 86 by the way) and they have taken her out on a couple of short trips. The main thing which has been pleasing for me to know is that the priest offers her communion and they pray for their 'friends' at the hospice who have passed on (three ladies this week) they have a service and light candles and have chance to talk and share feelings. the Doctor also is excellent and has offered to examin my mother - something she has been reluctant to allow as the cancer has grown. She is less afraid I think and has become reunited with her faith which is the best blessing of all. The hospice gives her comfort and I hope that when they doctor asks her to stay, it wont be too scary a prospect for her.

I am so glad hospice was there for your dad ibarro. dying in your moms arms was a nice way to go I think . Sorry for your lose but your right he is not suffering anymore.

reacting to ksue5036 comment, the doctor recommended Hospice to my dying stepfather when he had just 6-12 months to live-he died 2 1/2 months later. I am glad to know that Hospice is helping you taking care of your mom. a nurse used to come 3 times a week to bath him. I am very graceful to the service they provided him. I went to my country to help my mom caring for him-he died went I was there. he died at the hospital. he hear me and he responded to me but most of the time he was unresponsive. is was very sad. he died of prostate cancer which expanded to the rest of his body. he died on my mom's arms. I am very sad for his lost but he is not suffering anymore.

My mom as been on hospice 6 mths and they are a life saver. She is no were near end of life if you ask me but she needs 24/7 care. We have to feed, change and move her. I had to ask her Dr. about Hospice she did not recommend it to me. For yrs. I loaded mom up in a wheelchair van kicking a screaming for Dr. appointments. Than my cousin said to ask the Dr. if mom could get hospice and I did and she said yes. I was mad because she did not tell me sooner I could have hopice care for mom. They pay for med. supplies and a nurse and aid come out 2 twice a week. Of course mom has to show she is getting worse or they cannot keep coming but it is a slow process and with hospice not such a horrible one.

your doctor will tell you when is time to call hospice. usually when the patient has 6 months to live/