We've been through the Hospice experience three times; four, if you count my 99 year old mother who lives with us. She was on Hospice for six months, and decided she wasn't ready to die yet. They put her on a new Hospice program, that still has control of her meds and sends someone by every month. It's called Palliative Care. She still intends to die at home, refusing to ever go to another hospital. You have to be okay with that. Hospice will pop back in when she declines again.
I have to say that the Hospice workers we've been acquainted with have all been angels. They made it great for my wife's father and grandmother to exit with dignity in their home, surrounded by loved ones. It's not for everyone, but, as a way to go out, there are a lot worse ways.
The biggest thing that happens is the shift from working to make mom healthier to helping her die. So where a hospital won’t give a patient more meds because it exceeds safe dosages for longterm health, hospice can legally increase meds to give comfort and do things like remove feeding tubes to hasten death. A friend remains enraged at hospice for over-medicating because “they killed” his family member, but it’s backwards logic - the person was accepted into hospice b/c she was dying. We were grateful my MIL got additional morphine when she was in pain and in last stages of dying.
A friends spouse stopped receiving physical therapy after a major stroke, because recovery wasn’t the goal. That took a new mindset b/c therapy to communicate better seemed like a no-brainer.
The second biggest thing is deciding if you want at home hospice or a hospice care center.
At home hospice means people in and out of your house to monitor progress, give meds, and deliver things (hospital bed, diapers, walkers, etc)(in 24 hrs at no charge) and I believe they help with showering - but they aren’t a companion service. Hospice comes when they’re notified of the death; I think they arranged the body to be taken from the home to the ME for official death documentation. .
Hospice centers give full-time care. The person I knew was at a hospice wing of the hospital for her last week. Huge relief because the family was scrunched around a hospital bed for days but in hospice there was a lounge which made a huge difference. But last year Covid restrictions dramatically cut visitation so you’d want to know the implications.
One other thing that may be relevant for you is how long she can be in hospice. I was told hospice accepts people who are expected to die 6 months but it’s not a concrete time limit. If someone recovers enough to not be likely to die, hospice can terminate early. Conversely if the person doesn’t die in six months but the evaluation is that he/she will likely die, there’s some reset button to continue care.
I wish your mom an easy death. The best one in my world was the person who puttered around the house and said “I’m going to lay down for an hour” to which his wife replied “okay, I’ll do some laundry and then start dinner.” I saw him after he died (at the crematorium) and he had the most peaceful expression I had ever seen on him,
Hospice is care that seeks to make the person comfortable, not to focus on curing a disease. So, hospice care can be at home or in a residential facility. The staff make sure the person is clean, fed, given fluids, given pain medications, positioned... to help the person feel comfortable. Many times family members help with the care and some people need professionals all the time to accomplish this goal. Family, friends, members of faith community... are encouraged to interact with the person as long as it doesn't upset the person.
The person's doctor writes a prescription for hospice. There are several hospice companies to choose from for home care. If in a residential facility, there is usually a hospice plan that is activated. Talk to the person's insurance company to see what options are available for the person. If in a facility, talk to social services for assistance.
My mom went on hospice this year at the recommendation of her GP. The first company we signed up with was for profit and it was not a good experience. The company we are with now is much better and assisted me in getting her qualified for long term care. The biggest thing I learned is that hospice is a service, not a place. They serve wherever your loved one is, whether at home or in a facility. They are also very focused on keeping your loved one out of the hospital since, depending upon the situation, they may be responsible for the bill.
If she is in an AL, talk to the nurse. As said, an aide will come to bathe her so that is one thing the AL aides do not need to do. You will need to be there more often but you should still be able to get the AL aides to help you. Mom is paying for care there.
Medicare does supply the meds. So you need to ask the Nurse how will that be done now. You will also get things like Depends, wipes etc. These supplies are your mothers. The aides are not to be using them for other residents. We had one member who kept the supply in her car and only took in what was needed.
PLEASE please please understand exactly what the hospice company will and will not do for you and for your mom before you sign up with them, and then realize that you CAN fire them if you want to, and put your mother back in the hospital for more treatment at any time if you so desire. What we read here all the time is 'hospice murdered my mother' and things of that nature, which is very far from the truth. Know what you're signing up for BEFORE you sign up for it, and understand that your mother does not want to take measures to prolong her life now. She's tired and wanting only comfort care at this point in her life when she realizes her passing is imminent. That's when hospice is most helpful; when everyone is on the same page and understands what will and will not be done for the patient.
Hospice was wonderful with my father when he had a brain tumor and there was nothing more the medical doctors could do for him. They were also very good with us, the family, and helped us process his death experience in the best way possible. They also kept dad very comfortable and not agitated during his last days on Earth, and by no means 'hastened' his departure. God took him when HE was ready, plain and simple.
I am sorry you're going through this with your mom and I hope God helps you both arrive at a place of peace and acceptance with what you're facing.
She has dementia and is failure to thrive. She went from 140 pounds to 72 now. She has severe pain in her stomach and has a severe case of spinal stenosis. She is incontinent both ways and unable to walk. She doesn't want any further treatment of any kind. From what I understand, she does qualify.
First she must qualify for hospice care, and from what I read in your profile, I don't see anything that is jumping out at me to be able to qualify. I can only guess that there is more to her story than what you have listed. You also say that mom lives in an assisted living facility. Unless you hire 24/7 care for her there, I'm not sure how that will work, as hospice will only have a nurse to come once a week to start, to check out moms vitals and such, and an aide will come about twice a week to bathe her. They will also provide any needed equipment, supplies and medications, all covered 100% under moms Medicare. But 99% of moms care will still fall on you or hired help, so just be aware of that. They do also provide a social worker, and chaplain if needed. The goal of hospice to keep the patient as comfortable and pain free as possible until they die. Also be aware that all hospice agencies are not created equal, so make sure you do your homework, before hiring one. My husband was under hospice care in our home for the last 22 months of his life, so as long as the patient continues to decline, they will remain under their care. I wish you and your mom the very best.
Check out California's site on qualifying for hospice care. It states at the very top of the page "Formally speaking, hospice care is available to people with a life expectancy of six months or less."
My opinion Hospice is wonderful She will have a Nurse that will come see her every week, more often if needed. A CNA will come a few times a week to bathe her, dress her and order supplies. All the supplies and equipment will be provided by Hospice. YOU will get support as well. You both will have a Social Worker, Chaplain and other services if you wish. I would not have been able to care for my Husband the way I di if it were not for the services of Hospice. He was on Hospice for 3 years. Just because someone is on Hospice it does not mean that they will die within a few months. (used to be that they anticipated death within 6 months) As long as there is a continued, documented decline a person can remain on Hospice.
First hospice will evaluate her to see if she qualifies. They must determine that mom is likely to pass within six months in order to qualify. I do not see from your profile that death is imminent. Does she have dementia, heart disease, cancer?
I have to say that the Hospice workers we've been acquainted with have all been angels. They made it great for my wife's father and grandmother to exit with dignity in their home, surrounded by loved ones. It's not for everyone, but, as a way to go out, there are a lot worse ways.
The biggest thing that happens is the shift from working to make mom healthier to helping her die. So where a hospital won’t give a patient more meds because it exceeds safe dosages for longterm health, hospice can legally increase meds to give comfort and do things like remove feeding tubes to hasten death. A friend remains enraged at hospice for over-medicating because “they killed” his family member, but it’s backwards logic - the person was accepted into hospice b/c she was dying. We were grateful my MIL got additional morphine when she was in pain and in last stages of dying.
A friends spouse stopped receiving physical therapy after a major stroke, because recovery wasn’t the goal. That took a new mindset b/c therapy to communicate better seemed like a no-brainer.
The second biggest thing is deciding if you want at home hospice or a hospice care center.
At home hospice means people in and out of your house to monitor progress, give meds, and deliver things (hospital bed, diapers, walkers, etc)(in 24 hrs at no charge) and I believe they help with showering - but they aren’t a companion service. Hospice comes when they’re notified of the death; I think they arranged the body to be taken from the home to the ME for official death documentation. .
Hospice centers give full-time care. The person I knew was at a hospice wing of the hospital for her last week. Huge relief because the family was scrunched around a hospital bed for days but in hospice there was a lounge which made a huge difference. But last year Covid restrictions dramatically cut visitation so you’d want to know the implications.
One other thing that may be relevant for you is how long she can be in hospice. I was told hospice accepts people who are expected to die 6 months but it’s not a concrete time limit. If someone recovers enough to not be likely to die, hospice can terminate early. Conversely if the person doesn’t die in six months but the evaluation is that he/she will likely die, there’s some reset button to continue care.
I wish your mom an easy death. The best one in my world was the person who puttered around the house and said “I’m going to lay down for an hour” to which his wife replied “okay, I’ll do some laundry and then start dinner.” I saw him after he died (at the crematorium) and he had the most peaceful expression I had ever seen on him,
The person's doctor writes a prescription for hospice. There are several hospice companies to choose from for home care. If in a residential facility, there is usually a hospice plan that is activated. Talk to the person's insurance company to see what options are available for the person. If in a facility, talk to social services for assistance.
Medicare does supply the meds. So you need to ask the Nurse how will that be done now. You will also get things like Depends, wipes etc. These supplies are your mothers. The aides are not to be using them for other residents. We had one member who kept the supply in her car and only took in what was needed.
Hospice was wonderful with my father when he had a brain tumor and there was nothing more the medical doctors could do for him. They were also very good with us, the family, and helped us process his death experience in the best way possible. They also kept dad very comfortable and not agitated during his last days on Earth, and by no means 'hastened' his departure. God took him when HE was ready, plain and simple.
I am sorry you're going through this with your mom and I hope God helps you both arrive at a place of peace and acceptance with what you're facing.
You also say that mom lives in an assisted living facility. Unless you hire 24/7 care for her there, I'm not sure how that will work, as hospice will only have a nurse to come once a week to start, to check out moms vitals and such, and an aide will come about twice a week to bathe her. They will also provide any needed equipment, supplies and medications, all covered 100% under moms Medicare. But 99% of moms care will still fall on you or hired help, so just be aware of that. They do also provide a social worker, and chaplain if needed.
The goal of hospice to keep the patient as comfortable and pain free as possible until they die.
Also be aware that all hospice agencies are not created equal, so make sure you do your homework, before hiring one.
My husband was under hospice care in our home for the last 22 months of his life, so as long as the patient continues to decline, they will remain under their care.
I wish you and your mom the very best.
https://www.aging.ca.gov/Care_Options/Hospice_Care/
She will have a Nurse that will come see her every week, more often if needed.
A CNA will come a few times a week to bathe her, dress her and order supplies.
All the supplies and equipment will be provided by Hospice.
YOU will get support as well.
You both will have a Social Worker, Chaplain and other services if you wish.
I would not have been able to care for my Husband the way I di if it were not for the services of Hospice. He was on Hospice for 3 years. Just because someone is on Hospice it does not mean that they will die within a few months. (used to be that they anticipated death within 6 months) As long as there is a continued, documented decline a person can remain on Hospice.