I'm the sole caregiver for my 95 yo mother who has dementia which is approximately at a 7 as per this article. Most of the time she doesn't believe that I'm her daughter and she doesn't know that she's been living with me for over 4 years. She thinks her parents are still alive and she is "going home" tomorrow. She rarely mentions my dad or my brother (both deceased) but every day first thing she wants to know if I've talked to her mother yet. She walks with a walker but must be escorted at all times because she is a fall risk - mainly from near blindness and from tangling her feet up as she walks. Her only health issue is thyroid, and she takes Synthroid 1x/day for that. I have to shower her and cook her food. She is partially incontinent and has to have help cleaning herself after a bowel movement. I'm doing this on my own and realized that in order to be proactive in her care, I needed to get a team around me. So, after yet another fall and realizing that things can go south very quickly, I had her doctor order home health and palliative/hospice care. (Each of these companies will send someone out to assess your loved one so you don't have to try and figure out for yourself if they will be helpful.) So now she has regular nurse visits and weekly physical therapy with a home health company. She is also in a palliative care program that can transfer her over to hospice when and if it's needed. I feel much better having resources and someone to call if things get over my head. I have no interest in shipping her off to a hospital for dehydration, so I have an in-home IV company give her a bag of fluids every two weeks with vitamin infusions. There is even an in-home x-ray company who came out after her last fall to make sure she didn't break something. It's been a great relief to have these resources.

I am caring for my 86 y/o father, who has advanced dementia. He lives with me, and he has recently become completely incontinent and refuses to change his Depends most of the time. I an exhausted with all the laundry and showering. He weighs 190, and I weigh 125. I need help. He is definitely stage 7 mentally, but physically he is ok except for fall risk, and he tries to get around without his walker by holding on to walls and counters. He has fallen a few times, and it would be more if I wasn't constantly watching him! He goes to the VA and I don't think they realize how much he has declined mentally.

Hospice care here has no been good for my mother. My brother has POA & has been controlling my mother who has dementia for the past 2 years. I used to do everything for her.....shopping, doctors, hairdresser, etc. When she could no longer handle her finances my brother stepped in & took complete control.
He uses undue influence over my mother & tells her not to talk to me or let me come over. He has called the police many times if I try to see her or speak to her on the phone. They keep telling him it's a civil matter, but he continues to call them. He has made my mother fearful of me & told hospice that there is a no contact order against me which isn't true!
Hospice believes everything he says about me instead of checking on the facts. I now haven't seen my mother in a year and it has gotten to the point where I have gotten a lawyer to try to see my mother & stop my brother from controlling all her thoughts & actions.
i thought hospice was supposed to help the whole family not someone who is a control freak!

Thank you !!! After reading this article I, as a "caregiver" of a spouse with advanced Parkinson , feel like maybe there is hope for relief when I just can't do it 24/7 anymore.
I cannot help but wonder what purpose prolonging a life beyond nature serves . Watching a prideful person reduced to a disheveled, shuffling, bent over confused, incontinent, drooling frail shell of himself is painful. I think please please do not ever allow me to get to this point have mercy save my dignity

My mother has all the traits of stage 7 except sometimes I can get her to focus and talk a little bit. Otherwise, she says things that make no sense or have no basis in reality. She doesn't know I'm her son and doesn't know she is living in her own house. When I take her to the doctor, half the time she will refuse to come back in the house because she says it isn't where she lives.

This was helpful because my brother has all of the qualifications for Hospice except he can still speak. He has no short term memory or doesn't always make sense either. Hospice did say I should ask the NH to start the process and see what the DR says. He was getting some therapy at the time but it doesn't really do any good. NH said he wasn't quite ready.
I have always been under the impression that Hospice gives the person more care than a NH but the staff at NH doesn't agree. His granddaughter is a hospice aide and certainly disagrees.

@sophe509 why did the costs go up for AL?? Just put My mom on hospice and she lives in AL- haven't heard of a cost adjustment but now I'm worried!

I can only say good things about hospice care. My stories for the care of both of my parents did not include horrible experiences. My mom had Parkinson's Disease and was on and off hospice care due to improving (I equate this to the great extra care she received, including physical therapy—invaluable for Parkinson's patients). Near the end, I begged my mom's family physician to get her back on hospice, but this doctor didn't think she needed it. Mom ended up with pneumonia and was taken from the nursing care facility to the hospital. My main request to the ER doctor was to please get her stable enough to send her back to her "home"/the nursing care facility where she was well-loved and cared for, and get hospice ordered for her. He did both, and about a week later my mom passed quite peacefully during the early morning hours. Her pain and discomfort were very much minimized by medications (and I pray these will be available for me when my time comes, if I must endure end of life discomfort).

My dad was on hospice for nearly 4 years. He had prostate cancer that spread to his kidney and into his bone. When his family doctor told us his diagnosis, she stated that he would likely die before my mom (which didn't happen). He had hospice care while living in a nursing care facility. His care was wonderful. His best friends were the care staff from the hospice. He had two male care givers that came several times a week to help him bathe. They joked, listened to his stories, and were there for him. The chaplain, social worker, and his hospice nurse spent time with me answering questions and giving me knowledge and encouragement when I needed it most. When Dad did get to the point where he was actively dying, the medications he needed were available. He also passed peacefully in the early hours of the morning nearly 4 years after my mom's home-going.

I'm sure that there are varying kinds of hospice companies and employees. I highly recommend getting to know the employees and if you're not a good fit, keep looking. Getting hospice earlier rather than later was really a great blessing for us.

I just lost my Mother on June 2nd. I took her to the Dr because he had said the last time he saw her he didn't feel as if she was ready for hospice. I told him he needed to reevaluate her because I believed she was. I got her to hi office and after seeing how much weight she had dropped he agreed and signed the orders, So the first hospice came and he started telling me about Medicare fraud! Like I was going to scam him or something it was very unprofessional. Anyway they said she was not ready, her life expectancy was more than 6 months, 2 more agencies came and said the same thing, they go by some idiotic booklet that is ridiculous! My mom could make a sentence at the time so she was still "fine". Anyway I finally found an agency to come evaluate her and they agreed to take her on. She passed a month later, but she was comfortable and at home with me. I was freaked out by the amount of comfort drugs they offer but i think it really helped her pass easier. I blamed myself after she passed because I thought maybe the morphine was the reason she died and if I had not gotten her on hospice she would still be here. I was her caregiver for almost 10 years and in the end I believe she was ready,

My mom is in a memory care assisted living facility but because these places don't have enough people working to manage the care needed for demential patients, her health has steadily declined. She was dying. They finally recommended hospice, and these hospice folks have been amazing. They immediately put her on the proper medication needed and prescribed it for a longer amount of time to kill the infection that was literally killing her. The facility physician was overloaded and allowing my mother to die. Hospice was the best thing they could have suggested. We are still taking mom out of the facility because we have seen the neglect. These facilities are so expensive and you STILL don't get the care your family member needs. It's crazy that all that money goes to THEIR bottom line. IF they hired more people on each floor, (currently 2 aids per 17 dementia patients) they might make a little less profit but the care would be so much better and residents would stay longer.

I know this will be a hot-button issue but I need to share my experience with Hospice. Just a few weeks ago, my loved one was booted off palliative care onto Hospice after presenting at the hospital with advanced heart failure. At the time, I was told that should there be any signs of improvement, we could "easily" transition back to palliative care. Not true. After five days of being pressured to administer the deadly cocktail of morphine and Ativan to an obviously-improving patient, calling for a nurse at one in the morning and being told to "wing it", and listening to every comment my loved one made being redirected to the subject of death, we had had enough and let them go. I had to fight tooth and nail to get her enrolled in palliative care again. I'm not condemning Hospice as a whole - many people I know have found comfort in their last days under Hospice care. Maybe it is just the area I live in - a busy capital area - or maybe we were just unlucky. Whatever it was, the moment my patient knew that we were off Hospice care she began to thrive again. We aren't in denial. We realize that she is on her way down the garden path - we just don't want her shoved from behind. Proceed with caution when dealing with Hospice. No matter what they claim, the combination of drugs they advise you to give your loved one is and is meant to be deadly, and should only be administered in cases of extreme end-stage suffering. This experience has left us emotionally and psychologically scarred.

My mom is in the rehab/nursing home due to her falls. I don't think that she will be able to walk very well with her balance problem. Also, I think she has moderate dementia. She keeps asking us to take her home. However, Dad is 89 years old with a back problem and I have cerebral palsy. Two of us, we just can't help Mom. She is saying that she doesn't need help, but she definitely does! She used to wandered at night at home.

I am wondering can the Hospice come in everyday to help Mom at home. She and Dad has Medicare. Wilł it be cheaper than hiring a caregiver?

I question why an assisted living place would charge more if hospice came in to care for a patient. If any change, it should be less.
This question is for SOPHE 59

***** This is the best article I have read on Dementia and Hospice.
Very informative. So well written. I have learned so much. I thank the author from the bottom of my heart.

I just need 2 know HOW 2 Get Help? What I should do next? I am alone in taking care of my 86 year old Mother who has had Dementia 4 yeas now & She needs 24/7 care & I just can't do it ALONE!

People with dementia may get 'better' on intensive hospice care and then get evicted from the service. This caused us lots of chaos and churning.
Plus if a loved one is in assisted living and goes on to hospice, the costs at the assisted living facility with sky-rocket, possibly doubling the cost.
It's good to tell all the positives, but tell the drawbacks, too.

Very good article. I recently had my mom evaluated by hospice and she didn't meet the criteria, but I will try again.

My 98 y.o. mom has advanced dementia and is currently being cared for at home. A good friend employed hospice care for her 100 y.o. mom who had dementia and lived in a nursing facility. My friend suggested that I learn more about hospice care for my mother who could qualify for those services. I found this article very helpful in filling in some of my knowledge gaps. Thank you.

Including hospice in any advanced disease is the seeing the end from the beginning and appreciates the blessing that hospice care provides to those near the end

Kevin Haselhorst, MD - author Wishes To Die For