I have posted on here many times and answered questions every now and then. Dad passed away Oct 7th 2013 from Liver Cancer . He was in a hospice facility for 11 days until he died. The day before he was admitted he was in the hospital and was talking,eating and very clear headed but his ammonia levels were high and he had been very combative, not eating and wouldn't take his meds for 4 days at his nursing home. ( He was in for a Psych Evaluation.) The hospice worker talked to me about admitting him instead of returning to the nursing home. I agreed to this and arrangements were made. He was transferred later that day and was alert and in good spirits. The next morning he was unresponsive and stayed that way until he passed. They gave him morphine and ativan around the clock. He never got any water but they did cleanse his mouth and moisten it with swabs. It seemed like he could hear me the first few days because I would shake his shoulder and say "dad". His eyes seemed to be moving under his eyelids and his mouth would move slightly. I did ask about them lowering his dosages so he could wake up a little. The nurse said he was getting a very small dosage already. I just wonder if the drugs made him unresponsive and if less was used he could have ate and drank and lived longer. I know it was time for him to go but I'm kinda puzzled about his going from complete alertness and straight into unresponsiveness so quick. The nurses did a Great job. I myself don't know how they do it. They treated dad like he was their baby. So gentle and compassionate. I was just wondering if anyone else had the feeling that death felt a little rushed once their loved one was placed in Hospice.
Here's what I found from Alz.org. Hopefully it will explain the differences.
Vascular dementia is a decline in thinking skills caused by conditions that "block or reduce blood flow to the brain, depriving brain cells of vital oxygen and nutrients" (my italics). In vascular dementia, changes in thinking skills sometimes occur suddenly following strokes that block major brain blood vessels. Thinking problems also may begin as mild changes that worsen gradually as a result of multiple minor strokes or other conditions that affect smaller blood vessels, leading to cumulative damage. A growing number of experts prefer the term "vascular cognitive impairment (VCI)" to "vascular dementia" because they feel it better expresses the concept that vascular thinking changes can range from mild to severe. Vascular brain changes often coexist with changes linked to other types of dementia, including Alzheimer's disease and dementia with Lewy bodies. Several studies have found that vascular changes and other brain abnormalities may interact in ways that increase the likelihood of dementia diagnosis.Vascular dementia symptoms may be most obvious when they happen soon after a major stroke. Individuals at highest risk include those who have had a stroke or a transient ischemic attack (TIA, also known as a "ministroke").
Alzheimer's is a type of dementia that causes problems with memory, thinking and behavior. Alzheimer's worsens over time. Alzheimer's is a progressive disease, where dementia symptoms gradually worsen over a number of years. In its early stages, memory loss is mild, but with late-stage Alzheimer's, individuals lose the ability to carry on a conversation and respond to their environment. Alzheimer's is the sixth leading cause of death in the United States. Those with Alzheimer's live an average of eight years after their symptoms become noticeable to others, but survival can range from four to 20 years, depending on age and other health conditions. The most common early symptom of Alzheimer's is difficulty remembering newly learned information because Alzheimer's changes typically begin in the part of the brain that affects learning. As Alzheimer's advances through the brain it leads to increasingly severe symptoms, including disorientation, mood and behavior changes; deepening confusion about events, time and place; unfounded suspicions about family, friends and professional caregivers; more serious memory loss and behavior changes; and difficulty speaking, swallowing and walking. It's the "destruction and death of nerve cells" (my italics) that causes memory failure, personality changes, problems carrying out daily activities and other symptoms of Alzheimer's disease.
(Me speaking) So in vascular dementia there is a loss of blood flow to the brain cells, in Alzheimer's dementia, there is a loss of nerve cells in the brain.
(Alz.org) Anything that damages blood vessels anywhere in your body can damage blood vessels in your brain, depriving brain cells of vital food and oxygen. Blood vessel changes in the brain are linked to vascular dementia. They often are present along with changes caused by other types of dementia, including Alzheimer's disease and dementia with Lewy bodies. These changes may interact to cause faster decline or make impairments more severe.
I'm sorry this couldn't have been better news. How sad for all of our loved ones and ourselves.
Anyhoo, my poor husband is 'blessed' with five sisters who are in varying degrees of denial regarding FIL's condition. Background: 85 year old, morbidly obese, with prostate cancer with bone mets throughout his body. Has had a few fractures. Last weekend he suffered a mild heart attack and subsequently discovered a tumor on his spine from the MRI for his heart. He declined an angiogram but accepted targeted radiation therapy on his spine - once a day for three weeks. Have in home PT for him three times a day, but that is it.
My husband and I think he should move to respite care or NH for his treatment plan. Sisters are bullheaded, idiots or who knows??? They think he can live alone. They say they are respecting his wishes not to move to a NH. They are delusional in my mind. He could die in excruciating pain from a bone break or his unresolved heart issues.
I guess I answered my own question. It's just extremely frustrating having what I view as a not wanting to be the informed person in charge. She has no idea of his finances which is her responsibility as executor of the will. Child of the 60's, darn it. Still in the smoke cloud. Gah! I'm known on here for taking care of my own mother. It's tough, but I'm responsible.
From what we have gathered from hub's dad, he could afford respite. Medicare would pay for transit to radiation. Girls don't want to do it because dad wouldn't want it. Time to parent your parent girls. No one wants nursing home.
Thanks for the kudos for hospice. Nice to know we're appreciated by some.
It sounds like your FIL is clear in his mind, (without dementia). Given that, he has a right, as we all do, to call his own shots. If he has been properly informed of his conditions AND what the outcome CAN be and he still chooses to be at home, that's his choice, however poor we believe it to be.
Since he has made his desires known, would he be receptive to have a caregiver help him in the house? Would any family members be able to take turns being there throughout the week? Can a neighbor check in on him? You could offer a bedroom in his home to a college/university student (rent free) in exchange for being there at specified hours.
He probably has visions of the dark, urine smelling nursing homes he visited relatives in when he was younger. I remember how awful the conditions were. Dear Lord, I wouldn't want to end up like that either! That's probably why he says no to any facility. He's not aware that we have progressed by leaps and bounds in facilities for the elderly/ incapacitated.
IF he would go, take him on a tour of whatever facility would be appropriate for his care needs. Maybe he'd change his mind. Many elderly also think they'd be abandoned by family if they lived there. I'm not sure you'll be able to erase his perception of what a care facility is like. It's part of his generation.
I would suggest in investing (very little money) in a push button alert system. I had one for my mom when she lived alone before her dementia got bad. It's around $20./month. The person wears either a necklace or bracelet (waterproof for the shower) and can push the button if they fall, chest pain or any other problem. An ambulance is sent. There is a key to the house in a lock box somewhere on the property, so they can go in and get him. It sure gave me peace of mind. It connects through the phone lines and can be heard all through the house.
I wish you all well and hope it all works out.
I don't know why your post showed up on my "wall" (whatever that is?) instead of on this thread. Your question was;
Since your mom seems to be doing better, can she come off hospice?
Usually, that is determined by the RN assigned to her case. The nurse's decision is based on Medicare guidelines. If she doesn't meet the requirements set by Medicare, she would be discharged from hospice.
It's not a bad thing to stay ON hospice because the hospice pays for many things, with no cost to you. The hospice is reimbursed by the government. The hospital bed/mattress and air or foam topper mattress, the medications, the diapers and bedpads, wipes, urinals, bedpans, any suction equipment, oxygen tanks/or concentrator and tubing are all covered free of charge. All of these benefits are not available if you cancel hospice.
You have a doctor visiting occasionally, an RN overseeing the care, an LVN for treatments, a Home Health Aide for bathing, a social worker for any information/services you need for your mom, a chaplain for spiritual needs, our hospice employs 2 music therapists for patient relaxation/comfort and a dietician, if needed. Our hospice even sends nurses for crisis care-when family can't handle the caregiving or when the patient has intractable pain or vomiting. We cover 24 hrs./day UNTIL the crisis has passed. (That's the job I do!)
All these services are available through one company and all without cost to the patient/family.
Talk to the RN assigned to your mom's case. If you really want her off hospice care, she would be the one to speak with. Of course, you would be able to put her back on hospice if you needed to. I'm glad she's doing better.
As for dying alone, you'd be surprised at the number of patients who wait until their love ones have left the room before they depart.
By the way, only a doctor can place a person into hospice. It depends on the medical condition and if the person is within 6 months of passing. Sounds like your brother-in-law didn't want to communicate with the family what was medically going on with your sister. He must have had his reasons.
Imagine if you will, receiving this sort of information about your life partner. Sometimes it is very difficult to wrap your head around, that you WILL be losing your Loved One within 2 weeks, due to her terribly difficult ilness or disease process.
He may well have felt that he could not manage her alone at home, by himself or even with the help of other family members and Hospice there helping to care for her, or perhaps he couldn't face her dying in their home. Hospice comes several times per week, plus their awesome support staff, but they are not there 24/7, and very likely in those last hours and minutes, you are alone with your LO dying in your arms, and not everybody is able to manage this sort of pain, and some people are often terrified of going through it alone.
So much goes through your head when you are faced with these life ending decisions, and depending on your family dynamics, relationships, closeness, his own fear, personality, or even what thay well may have discussed Privately over the course of their marriage, sometimes couples want to keep things private to spare others or their own feelings.
I understand how saddened you are and losss you must feel, to be left out of that loop, being that it was your sister, when it could have been so very different had he confided in you. I do know, that Hospice in No Way, nor would any Dr, allow your sisters life been taken in haste, that is against the law and against all of Hospice's intentions, to ever take someone's life, before their time. They are only here to help with end of life support and to keep people comfortable and in as little pain as possible, in the event of a life ending illness or disease. I imagine his decision was difficult, painful, and obviously a very private thing that he did, keeping others out of the loop.
Your sister has now passed away, and for that I am very sorry for your loss, but if I were you, I would give it a little more time before trying to figure out the reasons why, but instead, celebrate her life as best as you can. Perhaps when he is in a better frame of mind, he will be able to discuss his decisions that he made on her behalf, but please know that it was probably very difficult for him, and he is grieving just as you are, maybe more so. If the situation is handled correctly, he may in time discuss this with you. Again, and you may understand his reasonings. I am so sorry.
Hospital can place a patient in Hospice as well. I know this, because they did this for my mom. Her NH PCP, "ditched" her 2 days before this happened. He did not come back to see her after this.
You're right, something fishy is going on. You're a family member, the nurse could have told you what was going on. Seems like a CYA situation with the place your sister was in.
Carol567 is probably upset she died, not in the comforts of home surrounded by people she loved, but in the "cold" place where hospice was administered.
You posted; "Her NH PCP, "ditched" her 2 days before this happened. He did not come back to see her after this."
When a patient is put on hospice, the PCP (primary care doctor) or doc in charge of the NH, TURNS OVER the care of his/her patient TO the hospice doctor. I doubt that her doctor "ditched" her. He referred her to hospice and failed to inform you that he would no longer be the head honcho. His mistake. Usually the hospice informs you of that, but maybe they thought that he had already made you aware.
You also posted;
"You're a family member, the nurse could have told you what was going on."
I'm not sure which country Carol is in, but here in the U.S., there is a law about how, when and with whom to share a patients' private and medical information called HIPPA, Health Insurance Portability and Accountability Act. It's designed to provide privacy standards to protect patients' medical records and other health information given to insurance companies, doctors, hospitals and other health care providers, (like nurses.) Basically, that means that the ONLY people who have access to the patients medical information are the ones that the patient designates (her husband) and the immediate professionals taking care of them. Usually, there are only one or two family members listed, normally just the closest of kin, in Carol's case, her sister's husband. We nurses sign binding documents, at any nursing job, that we will NOT give out patient information to anyone but the authorized POA or Custodian. I could loose my job if I was caught doing so. THAT is why the nurse didn't share the information with her sister. Most probably, her sister's husband was the only one on the list with whom the nurses and doctors could divulge her medical status. The nurse was following the law. Surely, you would want her to do the same with you and your loved ones.
And lastly, you said; "Carol567 is probably upset she died, not in the comforts of home surrounded by people she loved, but in the "cold" place where hospice was administered." I think Carol is more upset that her sister's husband kept the truth from her and she wasn't allowed to be part of her sister's dying process.
P.S. Hospice can be administered anywhere... the patient's home, an actual hospice building, a nursing home, the home of a family member, a memory care unit, a hospital room, etc.
"It's extremely difficult to cope with if you have no say in the POAs decision." Yes, it is, but the dying patient has a right to have whomever they choose to be their POA.
" My mother passed in 2 days on hospice, alert with strong vitals." Your mother must have been very close to passing when put on service. This often happens. Are you aware that "vital signs" can stay strong up until the very end? I have had patients that I knew would be passing THAT DAY with blood pressures of 110/60. All vital signs don't have to go wacky as death nears.
"IMO hospices are being abused with overdoses of morphine and need to be investigated." The medication regimen is fully discussed with the patient and family. We have a standard routine medication sheet. It contains Morphine 5 mg. (a nominal dose) usually ordered every 4 hours., more Morphine for 'breakthrough' pain 5,10 or 15 mg. (up to the nurse's discretion, depending on the patients weight and pain level.), a medication to dry up excess secretions (in case the patient has a large amount of mucous), a laxative (if needed, to aid in relieving the constipation caused by narcotics), an anti-anxiety medication (to help with the agitation that can be present near the end or with dementia), and any other med that might be needed to make the patient more comfortable (Tylenol suppository for fever, anti-emetic to control nausea,etc.). I will agree that Morphine can make patients sleepy, to the point of being difficult to arouse, but it's not enough to kill an adult.
"A church member who was family friends with hospital administration convinced my sister (POA) to put my mother on hospice and tried to force me to agree by yelling and pushing in on my head, "Your mother's going to die!" ,to cover up for malpractice of my mother's thumb having to be amputated." I seriously doubt that the church member wanted your mother dead so she wouldn't sue the hospital. Your mother designated your sister as POA to make her medical decisions. I don't think she would have done that if she didn't think your sister would have her best interests at heart.
"Still waiting for a good lawyer to take my angelic beloved mother's nursing home neglect for ruptured colon and hospital malpractice for cutting off my mother's circulation"... Yes, by all means, contact a lawyer and see if you can get the nursing home and hospital charts and make a case, if you really suspect foul play.
" but, by all means, I thank the hospital for saving my mother's life"... So they DIDN'T plan to kill her!
"until the conspiracy to end her life on unnecessary hospice (that) her primary Doctor didn't recommend." Then which doctor did? I'm sure it was discussed with your sister, being the POA. This is the problem we see in hospice, where the family members don't communicate with each other.
"...as ICU and the imposter church member ended her life while my mother was making a miraculous recovery with strong vitals and improving white blood cell count from 3000 to 1600 ridding bacteria or sepsis as she died from respiratory failure and psychosis but she was alert during her recovery." Oh my! Your mom would not have been on hospice unless she met the Medicare guidelines. Most often that means the person has 6 months or less to live. If the doctors would have thought she was making a "miraculous recovery", they would have made discharge plans. PLEASE get a copy of the information sheet outlining the treatment from the hospice that took care of her or from your sister. A person can have improving lab values or good vital signs and pass away from cardiac failure, renal failure, cancer, stroke, etc. A normal WBC count for a woman is 4,500 to 11,000. (I'm assuming you forgot a 0 at the end of your lab values) At 16,000, she was still septic. Also, people don't die of psychosis, which is loss of contact with reality.
"MY MOTHER WAS KILLED UNDER THE GUISE OF HOSPICE IMO. Please set up an hospice investigation or request it if you have true love for the aging and elderly and their right to quality of life and aging in place. Please help resolve my mother's murder."
You and your sister should talk to the hospice that cared for your mom. As the POA, ask your sister to ask for copies of her records or to read the files they kept. It has everything documented. Hospices aren't in the business of killing people. Really, it would be more profitable to keep them alive to continue to receive government money. We are in this business to HELP RELIEVE suffering at the end of life. Would you have preferred to see your mother writhing in pain? Or severely anxious as she neared the end? Or vomiting uncontrollably? I don't think so. I don't kill patients, I make them comfortable so they can live their last few hours on this earth in a medicated peace. Your mom died when God took her (IMO). If you want to blame someone, talk to Him.
I feel bad for Carol, since she did not get a chance to say goodbye to her sister. I have seen and know about the patients medical privacy.
The fact that you weren't there at the time of death, does not mean that you let them down, they may well have preferred to be alone! Your FIL may have been scared to die, and was begging you to Save him, but do you really think that you had that capability? Many people are afraid of dying, bht they are generally in a facility who is carefully monitoring them, and if they slip away quietly when nobody is around, that is often cardiac/respitory failure, and not a painful way to go. I only hope that I can quietly slip away in my sleep, under the comfort of a Morphine haze. What do you people expect for end of life, devine intervention? People die in their own time, not controlled by Drs, Nurses, clergymen, or yoyr brothers and sisters, and certainly not by the title of POA! The dying patients enlisted POA because they trusted that they would abide by their wishes. End of! Tge reason the dying patien didn't choose you as POA, is because perhaps they felt that you might fall apart and make poor choices based off of unrealistic expectations. They are on Hospice because their medical professionals determined that the end of their lives was near, and that comfort care was the very best option! The medical professionals didn't set out to kill them, that's not normal thinking! You can't change the inevitable!
We know we all will die. We can inform ourselves as to what our options are, we can put our wishes in writing and tell our loved ones too. We can designate one person to carry out those wishes. We, however, have no say in what maladies befall us. One gets cancer, another COPD, another Alzheimer's, etc. The "chosen one" (POA) had to navigate through the illness to try to carry out their loved ones wishes. No one wants pain, now or at death. It can be difficult for the family to manage the patient's severe pain at home. Many family members are uncomfortable giving medicines. That's where hospice comes in.
Now the question I have for the "blaming ones" is, Why didn't you do any research into what the POA agreed to with hospice care? You want to blame us for "killing" your loved one but did you ask us for a copy of the admitting contract, what the hospice doctor's orders are? Did you speak to the POA about your concerns? Probably not. It's just easier, in your sorrow, maybe anger, maybe denial, to blame someone for for loss. (Read any writings/books by Elizabeth Kubbler-Ross. A good one is "On Death and Dying"). Have you ever witnessed a painful or struggling death? Probably not. It's heart wrenching.
I'm sorry your family member has to die. Mine have to also. And you'd better know, that when my mom's time comes, I'm NOT having her suffer or struggle as she departs this earth. I hope the same is done for me.
Of course there are bad outcomes and unforeseen events.
Did the mule that kicked your relative in the head, gave her a concussion, that sent her to the hospital where they operated and she never recovered consciousness get paid by the hospital to drum up business and make money?
That is a ridiculous argument and so are some of the recurring comments on this thread.Nurses and Drs are people too some good and some not so but they are not in the business of killing people.
According to Wikipedia;
"A large overdose (of Morphine) can cause asphyxia and death by respiratory depression if the person does not receive medical attention immediately. The MINIMUM lethal dose is 200 mg. TWO HUNDRED MILLIGRAMS!!
We start the patient on 5 (FIVE) mg. every 4 hours. More Morphine can be added for "breakthrough" pain (pain not received with the 5 mg. routine dose). The breakthrough pain dosage can be 5 mg., 10 mg., or 15 mg. every hour. So, for every 4 HOUR period, IF you give the maximum dose, the patient could receive a maximum of 65 mg., a far cry from the 200 mg. minimum lethal dose.
So, for the accusers, do the math. We hospice nurses deserve an apology.
Thank you for your comments. I'm sorry for the loss of your parents in such a short time. I'm not upset with Hospice at all. They were very nice and caring. I was disappointed of the lack of notification that my mom was on hospice, until a couple days later. Ironically, the NH PCP found the number and even called the police when the Hospital wanted her body removed, but could not do the same when it came to Hospice.
You do know in some hospitals, depending on the condition of the dying patient, regular nurses would still care for a patient, even in Hospice, don't you?