Anonymous wrote:OP. What I am looking for is for something to hasten parent to the end. They are in assisted living, on an anti-depressant, regular visits from family, lots of options for meals and activities. But....
Cannot enjoy life at all, unsafe without walker, doesn't participate in any activities, repeats the same complaints about the other residents, staff, over and over, is more demented each week (at this point only knows name, and lives in AL, but disoriented to date/year/time of day, more delusional). Being treated for UTI, but still not getting better mentally. Incontinent--and fighting wearing "diapers"--this has been going on for years. Anyway, if pain was an issue, Hospice can give narcs until you lapse into a coma and pass. So, honestly, parent needs a merciful end.
It's a shame we have spend our last years in such a state. I don't know.

One of the reasons we “spend our last years in such state” is that end of life care resembles nothing so much as the “death stills” in Frank Herbert’s “Dune,” where bodies are trained of their elemental wealth and the rest discarded. There are cultures where the elderly/infirm get care at home from family, friends and volunteers. But there’s no money in that.

Anonymous wrote:I am so so sorry, OP. That is truly awful.

I don't believe hospice will take people without a terminal diagnoses, but what you're looking for is palliative care (designed to comfort, not to heal or prolong life). But since it sounds like they aren't getting treatments they can stop, there's not much that can be done, as I don't believe dementia would qualify for any more aggressive options, like medical aid in dying.

Make sure that all the paperwork is in place - DNR, living will, etc.

Best of luck to you and your parent. You're in my thoughts.

So called “living wills” are not always a great idea. They can result in people getting measures they wouldn’t want now, based on decisions made in the past. A medical power of attorney is far better. And DNR’s require supervision. A patient with a transient condition (shortness of breath from renal failure) amenable to rapid resolution (lasix) can end up shoved in a corner to drown when the only reason they signed a DNR was to avoid having people pounding on their chest if they arrested.

Anonymous wrote:

Anonymous wrote:Hi OP. I’m so sorry you are having to make this decision. It’s never easy. I work for hospice. Start with her doctor. Tell the doctor that you believe her pain and anxiety are not well-controlled, and ask about Hospice care. A doctor needs to affirm that the illness (dementia), assuming it follows a typical course, is likely to result in death within six months. That doesn’t mean the patient will die in six months. Doctors recert as long as the patient does not improve. For a 90 year old, it shouldn’t be difficult to get.

Know this - Hospice absolutely will not hasten death. They also won’t prolong it. It’s all about palliative care - comfort care. But never about speeding up the natural dying process. We keep patients calm and comfortable and simply allow death to occur naturally. Having said that, hospice won’t force feedings or fluids. No feeding tubes or IVs (with the rare exception). No treatments for the Illness. We just manage symptoms. Some of my patients have been in our inpatient facility for over two years. I have home hospice patients that I’ve been seeing for over a year. When death is near, a patient’s body begins to shut down. They are no longer hungry so they stop eating. They are no longer thirsty so they stop drinking. This is usually really hard on families because they assume their loved one is starving. In reality, they are dying and the body has no need for food anymore.

State laws and insurance vary. A hospice social worker in your state can talk you through that. I’m an interfaith hospice chaplain and am happy to answer any questions. I know this is hard.

NP. This is really helpful to hear. Thank you for all you do.

I would love if you'd do an AMA sometime. Are there any books about the end of life or hospice that you'd recommend, to help demystify?

And OP - I am so sorry you're going through this. It's so kind of you to try to help your parent be more comfortable and happy.

there are many hospices that you DO go to. you can also have hospice care come to you.

sounds like your loved one may not really be ready for this. sounds like they need a memory care spot.

Anonymous wrote:Need a dx from doctor of 6 months or less expected life span.

This. Hospice is reserved for 6 months from death. Of course some go over that but it's rare

Anonymous wrote:Hi OP. I’m so sorry you are having to make this decision. It’s never easy. I work for hospice. Start with her doctor. Tell the doctor that you believe her pain and anxiety are not well-controlled, and ask about Hospice care. A doctor needs to affirm that the illness (dementia), assuming it follows a typical course, is likely to result in death within six months. That doesn’t mean the patient will die in six months. Doctors recert as long as the patient does not improve. For a 90 year old, it shouldn’t be difficult to get.

Know this - Hospice absolutely will not hasten death. They also won’t prolong it. It’s all about palliative care - comfort care. But never about speeding up the natural dying process. We keep patients calm and comfortable and simply allow death to occur naturally. Having said that, hospice won’t force feedings or fluids. No feeding tubes or IVs (with the rare exception). No treatments for the Illness. We just manage symptoms. Some of my patients have been in our inpatient facility for over two years. I have home hospice patients that I’ve been seeing for over a year. When death is near, a patient’s body begins to shut down. They are no longer hungry so they stop eating. They are no longer thirsty so they stop drinking. This is usually really hard on families because they assume their loved one is starving. In reality, they are dying and the body has no need for food anymore.

State laws and insurance vary. A hospice social worker in your state can talk you through that. I’m an interfaith hospice chaplain and am happy to answer any questions. I know this is hard.

NP. This is really helpful to hear. Thank you for all you do.

Hi OP. I’m so sorry you are having to make this decision. It’s never easy. I work for hospice. Start with her doctor. Tell the doctor that you believe her pain and anxiety are not well-controlled, and ask about Hospice care. A doctor needs to affirm that the illness (dementia), assuming it follows a typical course, is likely to result in death within six months. That doesn’t mean the patient will die in six months. Doctors recert as long as the patient does not improve. For a 90 year old, it shouldn’t be difficult to get.

Know this - Hospice absolutely will not hasten death. They also won’t prolong it. It’s all about palliative care - comfort care. But never about speeding up the natural dying process. We keep patients calm and comfortable and simply allow death to occur naturally. Having said that, hospice won’t force feedings or fluids. No feeding tubes or IVs (with the rare exception). No treatments for the Illness. We just manage symptoms. Some of my patients have been in our inpatient facility for over two years. I have home hospice patients that I’ve been seeing for over a year. When death is near, a patient’s body begins to shut down. They are no longer hungry so they stop eating. They are no longer thirsty so they stop drinking. This is usually really hard on families because they assume their loved one is starving. In reality, they are dying and the body has no need for food anymore.

State laws and insurance vary. A hospice social worker in your state can talk you through that. I’m an interfaith hospice chaplain and am happy to answer any questions. I know this is hard.

Anonymous wrote:

Anonymous wrote:Parent is 90, incontinent, demented, but has nothing that will kill them. Can walk with walker and feed and dress self. Takes BP meds, and an anti-depressant. The cholesterol med was stopped a while ago. Would hospice take a person like this? What would they do? Parent expresses wish to die. Honestly, it would be a blessing. They never would've wanted to live like this, nor would I if it were me. I am lost.

Hospice is for people in their last six months of life.

Generally, in the DMV, hospice is not a place people go. Hospice comes to the person and is very skeletal. For example, they Avery good at proving the equipment one needs in the last six months- like a bed chair or a hospital bed. When my father was ‘in hospice’, he lived with us. The nurse came once a week for a bout 30 minutes, the social working came every other with the nurse. An aide came twice a week to give my Dad a sponge bath. The doctor came once the entire time (two days before he died). He was ‘in hospice’ for three months. They also arranged for an orthopedist to come and cut my Dad’s toe nails and gave us the morphine he needed in the last 24 hours. That was it. Medicare paid for each visit and rental charge on each piece of equipment. The nurse was $300 each time she came. The hospice also got a monthly fee of $5,000 a month for who knows what. I think it is somewhat of a scam. The was Capital Caring and 5 years ago.

If a person lives in a nursing home or assisted living facility, hospice goes there, but the person still has to pay the assisted living /nursing home fees like before. It is an add one thing, not a replacement thing.

This. Hospice is an add-on to whatever you choose to do, basically. It does not "take you in" and provide the round the clock daily caretakers, for example, so you still need to arrange for nursing home/assisted living/home health care.

Anonymous wrote:Parent is 90, incontinent, demented, but has nothing that will kill them. Can walk with walker and feed and dress self. Takes BP meds, and an anti-depressant. The cholesterol med was stopped a while ago. Would hospice take a person like this? What would they do? Parent expresses wish to die. Honestly, it would be a blessing. They never would've wanted to live like this, nor would I if it were me. I am lost.

Hospice is for people in their last six months of life.

Generally, in the DMV, hospice is not a place people go. Hospice comes to the person and is very skeletal. For example, they Avery good at proving the equipment one needs in the last six months- like a bed chair or a hospital bed. When my father was ‘in hospice’, he lived with us. The nurse came once a week for a bout 30 minutes, the social working came every other with the nurse. An aide came twice a week to give my Dad a sponge bath. The doctor came once the entire time (two days before he died). He was ‘in hospice’ for three months. They also arranged for an orthopedist to come and cut my Dad’s toe nails and gave us the morphine he needed in the last 24 hours. That was it. Medicare paid for each visit and rental charge on each piece of equipment. The nurse was $300 each time she came. The hospice also got a monthly fee of $5,000 a month for who knows what. I think it is somewhat of a scam. The was Capital Caring and 5 years ago.

If a person lives in a nursing home or assisted living facility, hospice goes there, but the person still has to pay the assisted living /nursing home fees like before. It is an add one thing, not a replacement thing.

Anonymous wrote:Hospice uses morphine to deal with pain - when you have 6 months or less to live, no one is worried about addiction. They do not use morphine to hasten death. At the very end, they use morphine to make breathing less labored - families often misinterpret this as hastening the end. Catholic and other proliferation medical facilities and nursing homes, allow hospice to come in which is a strong indication that they are not hastening death.

As far as the 6 months to live - that is somewhat elastic. People are often still alive at the end of 6 months and are usually eligible for a renewal of hospice.

Exactly. I am always surprised when people say that they think hospice workers give morphine to hasten death. Nothing could be further from the truth, and saying this can discourage soem families from taking advantage of the resources offered by hospice organizations.

My friend’s 95 year old mother got kicked out of the Hospice Program because she was stable for 3 months. Remember that Hospice is paid for by Medicare and you have to be actively dying. Apparently, being old is not enough.

Anonymous wrote:It sounds like a nursing home would be an option but not hospice.

This. Hospice is only for those about to die.

Pro life not proliferation

Hospice uses morphine to deal with pain - when you have 6 months or less to live, no one is worried about addiction. They do not use morphine to hasten death. At the very end, they use morphine to make breathing less labored - families often misinterpret this as hastening the end. Catholic and other proliferation medical facilities and nursing homes, allow hospice to come in which is a strong indication that they are not hastening death.

As far as the 6 months to live - that is somewhat elastic. People are often still alive at the end of 6 months and are usually eligible for a renewal of hospice.

I'm sorry OP. You can request (or perhaps need a doctor to do this) an assessment for hospice eligibility. They have some pretty specific criteria to screen out people who are just very old OR in a state of dementia but not near death. We found this very frustrating during our father's final stages of Alzheimers. The main criteria is someone who has six months or less to live; for someone without a terminal diagnosis, but clearly declining, weight loss (% body weight) and/or loss of speech were the specific requirements that I recall. I believe the restrictions are related to the fact that hospice is covered under Medicare and they need/want to avoid someone on hospice for years and years.

Hospice won't "hasten parent to the end," to use your phrase, but they are a godsend in providing an extra set of hands for a few hours each week and someone whose primary goal is palliative care - making the individual comfortable.