Thank you Veronica, I appreciate your response and info. We see my Dr. tmw and will see if he agrees with what I feel is happening. I have a very strange and unusual disease. It's not one where they can give an even close time frame, I was told I could go rapidly or I could live another couple years. It just depends what organ the disease decides to attack next and if it's a vital organ or not.
In the last 10 days I have lost all appetite, no desire whatsoever to eat. I only have my small intestine left and it's very finicky. So I've lived mostly on liquids for the past 2-3 years but have had "some" foods I could manage. NOT NOW!! I am COMPLETELY on liquids and in the last 10 days have only had Propel (water), G-2 (a type of Gatorade) and one "Cup of Soup" or a can of V-8 for supper (only because my husband insists). I've lost 10 pounds in 10 days. I am recording my I & O's for the Dr. because I also have no need to void and when I do I go "maybe" 200cc's and it takes me several minutes to trickle it out. No burning or anything, my bladder just seems to be shutting down. It's the same thing with my ileostomy output. My total output is half of my intake for the day. I'm not sure what's normal but I don't think this is right. I just don't "feel" right.
Guess we will see tmw.
Anyway, the other point I was trying to make is in their advertising, I think they are WRONG to only show and talk about really elderly people! They need to reach out to ALL AGE GROUPS and let them know this wonderful program is available to help them through THEIR END OF LIFE JOURNEY TOO!! Not just grandpa and grandma's.
People with babies, teenagers, people on up to my age (51), etc., wouldn't have a clue there was amazing help available to them by looking at this site. They need to change their pictures and a few testimonials, etc..
I guess I just feel really strongly about it (obviously), but I've experienced the beauty of Hospice before with 2 younger people and it TRULY MAKES A DIFFERENCE in their passing and for their families!!
So, that's all, lol! Thanks for letting me spill my thoughts to you!!
God Bless!
MammaJ

Mamma as you say Hospice is for everyone from the newborn to the extremely elderly. Anyone can call them in and the hospice personnel will decide if the patient is ready for their services. The Dr does have to approve the referral and see the patient before admission.
Hospice is for the whole family not just the patient and provides counseling for up to 13 months following the death if desired. There is a whole team ready to provide help from Aides up to RNs and an MD not to mention Social Workers and Ministers. Services are offered not mandated. Treatment aimed at recovery is not usually available but if something like Radiation is recommended to shrink a tumor and reduce pain it will be allowed. Patient comfort is paramount and the necessary medication to achieve that end is often provided in greater quantities than typically used in a hospital. This is not to hasten death and I do emphasize this but to ensure the comfort of the patient. Hospice can not insist these medications have to be taken if the patient or caregivers refuse.
Mamma it is time for you to call Hospice even if you do not yet need nursing care you will greatly benefit from the emotional support and the services of volunteers. Volunteers are wonderful, they may simply sit with you or help finish projects, take you shopping or to special events. Don't be afraid to ask about things that are important to you. I have seen volunteers type for someone finishing a book, cut fabric to complete a quilt, just sit and play cards, the list is endless.

Why do you only refer to Hospice and the elderly parent/person? I'm 51 and terminal and feel my body shutting down. Hospice is something I definitely want for my final time. I am at peace and ready to meet Jesus but know Hospice would be the way for myself and my family. I just think you need to have stories letting people realize Hospice is for everyone, even children. People die at ALL ages and can benefit from Hospice but they would never know it from your site.
Just a thought.

A relative can call hospice to discuss the options. You do not need a physician's order, as was noted in comments. If your loved one is in a nursing home, and the physician in charge doesn't agree with the patient/family wishes for hospice, call for a meeting with the social worker, physician, and rest of team. If this doesn't work, you can contact an ombudsmen. JCAHO, or Department of Health. Sometimes just saying you are willing to do this might help sway things in your favor.

Pkon234, please note that with most Hospice it isn't a full-time hands-on caregiving service, the Aides come to the house or facility every couple of days for 30 to 90 minutes depending on what needs to be done, making sure the patient is comfortable, bathing him, changing the bed linen, tidying up the room. There will be a physician and hospice trained nurse assigned to the patient and will come as needed. There is also a clinical social worker, inerfaith chaplain, a bereavement coordinator, trained volunteers all available, and telecaring team members to answer any questions.

Hospice will provide medical supplies and equipment, and will teach the family or caregiver how to use said equipment. They are available around the clock should the family have any questions.

Pkon234, cancer is a very complex illness, curious how you think your friend could live longer? And would he want to endure what he is going through for another few months?

I have a friend that as we speak he is dying and Hospice can't do anything I do not understand.He is married but she is disabled and me and my family love this family.We are the only one's they have that live close to them.I feel hospice should go every day and help her help him.He has Pan. Cancer and to for gone they have gave him two weeks,But I feel he can live longer with the proper help.

My Dad past the end of January of this year. He was 92. Had hospice for the last week of his life and it was very peaceful for him. I wish I had done it sooner also. My mother who is 87 just had a stroke now has pneumonia and her heart is giving out going to talk to the nursing home today to request hospice so she can have some peace in her final days. So hard making these decisions.

MOm was just released off HOSPICE. Made a doctor appointment next week, making plans to get another hospital bed, because Hospice needs theirs back, and I understand...So making arrangements for another one.... GEtting her medications on a list to give her primary doctor to go over to see if we can cut back any of them... I know for a fact that THYROID MEDS are VERY IMPORTANT.... As far as ALZ meds like Namenda, and Aricept will not be readminstered, as she is in the later part of ALZ, and I don't want to keep this disease dragging on longer...This stuff won't make her better ....So I I will try to make her happy and stronger with Ensure or other protein drink, rootbeer cuz she likes it, and milk shakes cuz they are fun.....,

LIzzy48, I experienced a similar situation with my brother. He had a rare brain dixease. He ended up in hospital during his last couple days. My oldest brother came down,,,,Now I know it's the end.....Nurses had orders to give him a pill....I asked whole heartedly, WHY?????? They ha dhim on morphine...REALLY A PILL? My oldest brother, note, I only have two , NOW JUST 1, ESCORTED me out of the room, so nurses could SHOVE A PILL DOWN MY BROTHER....WHY??? I STILL DON'T know why. STUPID..He died a day later anyway....WHAT IS THE REASON FOR THAT LAST PILL? MORHINE DRIPS..REALLY, CAN'T ANYONE SEE IT IS HIS LAST DAYS HERE??? THEY COULD'NT GET A GRIP ON THE IDEA THAT A PERSON IS GOING TO DIE ON THEIR SHIFT??????? IT HAPPENS... LIFE HAPPENS, DEATH HAPPENS, TO THE BEST OF US. AND THE WORST OF US... WE ARE ALL IN THE SAME .....BOAT.....OR THE SAME RIVER... MAYBE SOMEONE ELSE HAS AN EXTRA PADDLE.......LIVE, LOVE, LIVE, BE KIND.....

Eve, if you are asking that question, then you already know the answer........90 years old... where do you go from there?..Make your loved one happy, comfortable, and for the love of them, don't prolong his disease...age,,,,, etc.etc.....Make peace with the situation, it's going to happen to all of us, one way or the other.....You don't choose....but you can make it as comfortable and loving as possible with your loved ones.....

My mother is paraplegic from a car accident 9 years ago and now at the age of 83 has gone through several major medical events. She has a seizure disorder and last month she had 4 generalized seizures in one day; the ER doctor mentioned that we might want to consider bringing in hospice. (Home Health already comes once a week to monitor a horrific bedsore she got last year in the hospital.) My mother lives at home with my father and a live in caregiver (I live down the street and am there several times a day). Last weekend she came down with the intestinal flu and I thought she would not pull through. My brothers came from afar and we met with the hospice director and got her in the program. Now, a week later, my mother has been out of bed, even "assisted" (watched) us make an apple pie. I don't know if I should tell her that she is on hospice -- she was a RN and already doesn't like the fact that we have to do everything for her, from personal care to simple tasks like feeding her cat. She is a fighter, had breast, colon and skin cancer over twenty years, and I don't think she would take us putting her on hospice very well. Suggestions?

I think it's sugar coating hospice in a nursing home. Hospice is great for dying "at home". But in a NH you have a lot of people to go through and shift changes etc ... I had a nightmare at NH with mother on hospice. My brother and I ended up sleeping in her room the last 2 weeks to monitor what nurse was giving her what. They overdosed her in beginning on morphine and she had seizure and no one called us or hospice. I advise anyone with loved one going into hospice or just nearing end of life to read "to die well" by Sidney Wanzer MD. The larger the facility the more people involved. The day before my mother passed a nurse shoved crushed oxygen in applesauce in my mother's open mouth even though she couldn't swallow and at my objections. She said it would dissolve. This was in no way comforting at her end for her or family.

I'm so glad that more and more of us are getting educated on issues that affect us more significantly as time goes on and we live longer and longer. My grandfather is getting to the point where he'll need care, but he's a very independent man. Nobody's looking forward to that conversation. I feel a lot better knowing that there are organizations out there that can handle care in a respectable, dignified way. Even checking with one sunrisehealth and I felt much better!

Best of luck to you all in making these decisions!
~Amy

When in doubt always call hospice. They can contact the doctor and discuss hospice care with him, he might not have even considered it before their call. The can come out and do a evaluation at no cost, these evaluations are very helpful and informative. Hospice is there to help. You DO NOT need a DNR to recieve hospice care. If you have any more questions about hospice care please go to my article "Redefining Hope: A Hospice Referral"

Lots of great points have been brought up about Hospice here. I believe Hospice can be a great way to enhance end-of-life quality of life. Asking your loved one what they want at this time is really important. Do they want to be visited by family friends as found possible and have a social worker and/or spiritual person for support and guidance (of the family too of course)? Do they want any pain managed so that they can be comfortable and yet maintain as much awareness as possible? Do they have any unresolved issues that they need help with? Hospice staff are skilled and experienced in dealing with end of life issues and this support and direction is for the family another huge bonus. Hospice is not a death sentence; some people get better and go off the program. However, it is a wonderful service that can greatly benefit both the patient and their family in a myriad of ways at a most challenging time...and no guilt required!

Well said. Hospice is wonderful.

My dad moved to Luvida Memory Care a while ago. The guilt has been tremendous, but reading other answers to other questions, it's like reading my life. I thank God for this website, and all the participants who are reaching out their hands, and especially their hearts for people like me. I've been so lost, but now I truly have a place to go to find answers. Thank you all

Hospice is the most awesome and wonderful home care you can have. Our doctor recommended it, Hospice intake folks came the very next day and we had them for 3 1/2 months. The nurse came once a week, but on call 24/7; the CNA came 3x's a week to do chair baths; volunteers came 2x's a week so I could have some private time; the social worker helped with much of the paper work if there was any; the grief counselor was/is wonderful. We did not use the chaplain that came to our family meeting. Hospice is so organized, you get a notebook with meticulous instructions, you can call them at any time 24/7 which we had to do several times in the middle of the night. They take care of the pain management with your own doctor's support; I did not want to call Hospice when we first talked about it, but finally realized that we needed more help than I could handle on a 24/7 basis. The nursing home should have nothing to say about whether Hospice comes in or not; you should be contacting Hospice and your doctor to get that taken care of. I could write a whole other story about my friend who went through a NH nightmare with her husband, now deceased also. Hospice is there to support and help you, the caregiver, as well as the patient - please do it. Life is too short for the patient anyway, but their comfort is most important, being pain free is the best gift you can give them. Caregiving is not for sissies. It takes patience, a loving heart, and some days everything you have in you to get through the day. Blessings for all caregivers, especially those of you who are just beginning your challenges. This post is a wonderful place to receive encouragement and many ideas how to care and cope. xxxooo

My dad had in-home hospice care for 15 months. He was diagnosed at age 87 with "general debility"...he had COPD, congestive heart failure, diabetes type II, legally blind from age-related macular degeneration, and was hearing impaired. He was completely dependent on others for his care...he could not walk and was incontinent. Thankfully, I was retired and could live with him (my mother passed just 4 months before he was enrolled in hospice...in that 4 month period, he also became dehydrated, had pneumonia for which he was hospitalized and surgery - from which he never recovered his strength - for colon cancer). Most folks don't know "general debility" is a diagnosis, similar to "failure to thrive". He became more and more frail as the months passed, and thankfully, hospice was there everyday to give him a bath, wash his hair, brush his teeth, etc, His nurse came every week and a nurse was on call 24 hrs. The social worker loved to share stories about her travels and he loved it, as he'd travelled extensively in his younger years. The chaplain came weekly and brought her puppy dog, which he loved. Our volunteers came so I could get out for a short period twice a week. I can never thank hospice care enough - these folks are angels on this earth!

Sylvia** Have you contacted the hospice group directly? I would report this. It certainly seems to be they are not dealing with the patient and the family as should be done. To me is appears the NH has overstepped their limits. You might also talk to her doctor.

Blessings!

There is so much confusion about hospice care but there is no need to wait if you need help. Call or go to the hospice office and discuss your loved one's condition and needs. They will help you to the best of their ability and tell you of other programs if your loved ones does not yet qualify. Hospices have to follow very strict Medicare rules to get reimbursement. Some Hospices have many more financial rescources available depending on their private funding and this does effect the number of nurses etc they can afford to employ which does effect the standard of care.
As far as pain control is concerned every patient has the right to be pain free and this is usually possible although it may require the use of drugs in far higher doses than normally recommended. Many people are terrified of morphine and there is a common myth that once you go into hospice they give you morphine and that kills you. The patient is free to refuse to take any medication. The patient will have the use of any drugs recommended for them and the effects of not following the advice will be explained. Drugs are offered not forced.
It is very difficult for many drs to accept that someone is dying and often see it as a failure of their treatment. They will often give a far too optomistic length of time the patient can expect to live. This does not do anyone any favors. being told. survival will be two years and it soon becomes evident that two weeks is more realistic. Hospice nurses are trained to always tell the patient the truth when asked. Caregivers will be warned about the prognosis so everyone has adequate time to prepare. Haveing a DNR in many places allows the nurse to pronounce the death and have the patient transported to the funeral home when the family is ready without having to call 911 and wait for the medical examiner to come out.
There is no time limit for hospice care although it is recommended that life expectancy is 6 months or less. There is also respite care when the patient can spend 5 days in a local hospital to give the caregiver time to rest.
I have only touched the tip of the iceberg so again strongly recommend contacting the local hospice they are there to help.

How do I explain the need for hospice to my mothger who fears dying?

my dad just went on hospice today and he has 3-5 days to live, but knowing hospice has taken over i think my dad is in a better place then he was at the hospital but i dont want my dad to die, but i know its going to happen, and its hitting me harder than what i thought it would. I was so happy to know that my dad is out of pain and he is on the Morphine Drip and as long hes not in pain, I am so happy. I love the hospice people in Las Vegas, Nevada, they are caring and so nice and they have a heart, unlike some of these stupid doctors out here.

Also for people that are too far away or just don't have time to take care of their elders for any good reason, there is a new service offering volunteer help nationwide. That service is called Elder Helpers and it's part of a larger tax exempt organization.

My family has our sister in a Nursing home under Hospice and I am so frustrated with Hospice and the Nursing department at the Nursing home.A DNR is signed and due to my sister not thriving with a feeding tube and unable to swallow and having a horrible infection not responding to any antibiotics the hospital Doctor told us we should now let her go comfortable and peacefully so we placed her under hospice in a nursing home.The problem is the hospice nurse is only going by what the nursing home nurses are telling her instead of what the family is seeing.We see her numerous times in horrible pain but the nursing home nurses are always reporting her calm back to the hospice nurse when thats not the real truth.They are even telling us they know her better then we do and all the moving around is normal for her since she was a patient at this nursing home prior to her becoming so ill with less then six months to live.The nursing home even wants to try feeding her again by mouth even though they said they knew she would probably asperate but they said they still would like to try.Am I the one that is not getting it or is this nursing home plus nurses and the hospice nurse way off base and should be reported ??My sister is to fragile to moved at this point and is in to day 11 with no formula or liquids of any kind but seems to still be having an output daily thru her cath.bag I'm thinking this is not normal either.Please help I need some insight !!!

I am attempting long distance care giving. My mother has chronic kidney failure, uncontrolled diabetes and bladder cancer with mets to the lymph nodes, liver and lung. I am the only family member accepting that she will not get better, and the only family member not local to her. My mother cleared me for information from the medical staff at the hospital where she is in ICU . Getting through the government's patient information proctection act was my first obstacle. I now am in regular contact with the social workers and case management team at the hospital, and have been able to exchange information which will help both my parents in the event my mother is discharged from the hospital. Thanks for everyone being here, I was feeling pretty alone with all this!

ask the home health team and his doctor....that's how i got my nana into hospice care, actually they recommended it, but it wouldnt hurt to ask.

My father has alzheimers, in feb. 2010 had a massive stroke. He is unable to speak, move, incontinent, and has to have all his food pureed. Then I need to feed him. He is in my home and I am his caretaker. He is also 90 years old. He has had infection after infection, sleeps 90% of the day, as of late hardly eats or drinks. Vital signs are erratic, just a mess. We had a home health agency when there time was up we requested in home hospice care. My question is how do you know if your parent needs hospice? or should he go back to Health Care.

Thank ya'll so much I will call and atleast talk with them and go from there.

If anyone has questions about Hospice, all they usually have to do is pick up the phone and call them. Ask questions, lots and lots of questions. If the time is not right, then at least you have information in hand. If the time is right, then you can have services begin. I personally cannot sing the praises of Hospice enough. I agree with the above, having a DNR does not mean that you cannot change your mind....at any time. Most people who enter Hospice do not want life prolonging measures.