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My father finally has moved from a skilled nursing facility to a long term residential home. We have previous experience with this home (though not with the dementia unit) and are pleased. I'm tempted here to write a long justification for why he is there, but suffice it to say that I am not looking for feedback on whether a nursing home was the right choice. It was.

 

Anyway, my father had three surgeries following a broken hip in August (suffered while living at home), and his cognitive decline has been predictable. He's not able to walk again because he is not able to process any physical therapy instructions. At all. He barely communicates and is very withdrawn. He can't do any tasks of daily life - has to be changed, fed, etc. He eats well, though. Getting him out of bed requires two CNA's and a hoisting machine.

 

Anyway, the move involved an assessment, and they are recommending that Hospice be called.

 

There is not much wrong with my father besides Alzheimer's and a blood pressure disorder that caused the falling. Falling is not an issue now that he isn't standing, though he will always be a risk if he tries to stand. Obviously his inactivity is going to have a negative effect on his overall health, but in my mind, he's not really dying of anything.

 

What exactly does Hospice do when called in for someone who is in advanced stages of dementia but isn't dying? (I know we are all dying daily, but I mean in the next months). I'm thinking my father could live 20 years this way. He wouldn't want to, but he could. So what would Hospice's role be here?

 

Obviously I will meet with them and ask all those questions (my Mom was the one who talked to the nursing home about the option, and she never asks questions) but I just sort of want to get a general idea of what this is like. I suppose I also wonder if I am just totally in denial about his longevity.

Edited by Danestress
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I am a little puzzled as well as to why they would call in Hospice. In our state- CA - Hospice enables terminally ill people to stay home as long as possible. They made it possible for my FIL to die at home.

Usually, they send CNAs or RNs to homes to administer medication and document new developments. They can sometimes be very helpful in determining when it's no longer feasible to remain at home.

 

Call and ask questions. I would write everything down that comes to your mind before you call because I forget things while I am in conversation with someone, especially if it's serious and they provide an abundance of information, it's easy to forget what you wanted to ask.

 

 

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Hospice is generally called in when a patient's physician gives an assessment that the condition is declining at such a rate that life expectancy is 6 months or less. It does NOT have to mean that, but it is assessed that way if the person continues to decline at the current rate, has had a medical issue that may increase the rate of decline or any other factors that contribute to that 6-month diagnosis. With Alzheimer's, I'm afraid to say, physical injury and other medical issues that require hospitalization can lead to a quick decline, particularly if the person is already at the later stages when ADLs (activities of daily living) cannot be performed on one's own. Are you familiar with the stages of Alzheimer's?

 

Hospice was great for us and dh's grandmother. They were able to provide many supplies through medicare, help with those ADLs, offer volunteer companionship to give us a break, etc. Before this, however, mamaw had been on hospice care at her assisted living facility. They provided many services. And our head nurse told us that as long as mamaw was showing a continuous decline, that she would remain on hospice whether it was for 3 months, 6 months or a year or more. It's more about a change in focus from preventative medicine to comfort and palliative care. Acknowledging that the end is coming, slowly or quickly, and making sure the patient's wishes for this time are granted and they are as comfortable as possible.

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Alzheimer's is a fatal disease. If his decline has been rapid, that often means that the progression of the disease is/will be as well.

 

In my area, hospice is palliative care. Its separate from long term facilities. LTC has palliative care as a part of their care, don't get me wrong...but hospice is a separate home/facility.

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Hospice does not have to mean a separate facility. Hospice nurses can come to a nursing home or even to your own home. Hospice nurses are skilled at making the life that is left more manageable - especially if there is any pain.

 

They stayed in the same room in their nursing home, but the protocols changed to palliative care. Both had terminal illnesses and their sons decided that the time for heroic medicine had passed. My mother-in-law died ten days ago after a series of strokes. My father-in-law is declining due to Parkinson's.

 

My father died of cancer in a dedicated hospice which provided palliative care to those near death.

 

Laura

Edited by Laura Corin
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Given his decline, there may be more medically here than just his unresponsiveness and immobility, although the Medicare guidelines for placement in hospice are more liberal if late-stage dementia is involved because it's a significant risk factor in itself. If he can't communicate, he may go more quickly because he can't tell people if something is seriously wrong. The blood-pressure issue may still be risk even if he can't stand depending on what's involved. The bottom line is that someone has evaluated him and determined that he is at serious risk for complications that will probably lead to his death.

 

Hospice benefits mean that he will actually get more attention and closer monitoring, and Medicare will up the coverage of his care appropriately. It doesn't mean that they have a firm expectation of how long he'll be in hospice, just that he's very frail and not expected to improve.

 

My dad received hospice care in a nursing home for six weeks before a stroke finally took him. It was as good a situation as you can get. It would have been extremely difficult for any family member to take care of him.

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I am a little puzzled as well as to why they would call in Hospice. In our state- CA - Hospice enables terminally ill people to stay home as long as possible.

 

 

That's how I always thought it worked. I was surprised that this nursing home recommended bringing them in, but it's also possible that I am not being realistic about hos bad his situation is.

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Hospice does not have to mean a separate facility. Hospice nurses can come to a nursing home or even to your own home. Hospice nurses are skilled at making the life that is left more manageable - especially if there is any pain.

I realize that from the OP. I was just saying that here, in my city, the two are completely separate. We don't have special nurses come in to LTC at all. Hospice services are either at home, or at an actual hospice home/facility.

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Alzheimer's is a fatal disease. If his decline has been rapid, that often means that the progression of the disease is/will be as well.

 

In my area, hospice is palliative care. Its separate from long term facilities. LTC has palliative care as a part of their care, don't get me wrong...but hospice is a separate home/facility.

 

 

I should have been more clear. They are referring the case to Hospice, but there is no talk of moving him. From what my (not factually reliable, but well intentioned) mother said today, a hospice nurse would be visiting the nursing home. I'm just confused because given how well he eats and the fact that his heart is healthy, I don't really see him as terminal. I know AD shortens lives, but he is only 73, and I could see him living for years just getting worse and worse but not dying:(

 

It feels so horrid to talk this way. Thank you all for talking about it with me. The irony is that my sister, who I am actually close to, used to be a hospice nurse. Strangely, I really wanted to process this a little with people who aren't grieving and don't love my father before I talk to her or my mother again.

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Anyway, the move involved an assessment, and they are recommending that Hospice be called.

 

 

 

 

If I had to pick a reason, it would be money. Insurance often has hospice benefits. Homes have found they can get patients their "extras" at no cost to them. There have been a few rumblings of a "racket".

 

I would ask for realistic assessment by his MD. A patient can be made DNR and Do Not Transport and No Artificial Hydration or comfort care etc. without hospice. Ask what is available if he isn't in hospice.

 

We used hospice for my father to get him quickly into a place that could give sublingual meds. He was there 12 hours, after enrolling the day before. We used hospice for my mother to be able to have her die at home without alarming anyone. She was enrolled about 36 hours before death. Both involved excess (for our purposes) paper work.

 

My brother was enrolled a couple of months, and helped keep him home until he needed "the big guns" and then he was wisked to a place with iv meds and generous docs. My SIL told me she kept telling them they were just fine psychologically, but please to just be there if they needed more meds on a Saturday night. Worked for them.

Edited by kalanamak
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My father finally has moved from a skilled nursing facility to a long term residential home. We have previous experience with this home (though not with the dementia unit) and are pleased. I'm tempted here to write a long justification for why he is there, but suffice it to say that I am not looking for feedback on whether a nursing home was the right choice. It was.

 

Anyway, my father had three surgeries following a broken hip in August (suffered while living at home), and his cognitive decline has been predictable. He's not able to walk again because he is not able to process any physical therapy instructions. At all. He barely communicates and is very withdrawn. He can't do any tasks of daily life - has to be changed, fed, etc. He eats well, though. Getting him out of bed requires two CNA's and a hoisting machine.

 

Anyway, the move involved an assessment, and they are recommending that Hospice be called.

 

There is not much wrong with my father besides Alzheimer's and a blood pressure disorder that caused the falling. Falling is not an issue now that he isn't standing, though he will always be a risk if he tries to stand. Obviously his inactivity is going to have a negative effect on his overall health, but in my mind, he's not really dying of anything.

 

What exactly does Hospice do when called in for someone who is in advanced stages of dementia but isn't dying? (I know we are all dying daily, but I mean in the next months). I'm thinking my father could live 20 years this way. He wouldn't want to, but he could. So what would Hospice's role be here?

 

Obviously I will meet with them and ask all those questions (my Mom was the one who talked to the nursing home about the option, and she never asks questions) but I just sort of want to get a general idea of what this is like. I suppose I also wonder if I am just totally in denial about his longevity.

 

Don't ever feel like you have to defend your choice. It's such a personal decision, one that only the family members can make among themselves. You did what you thought was right, and that's all we need to know.

 

I'm so, so very sorry you're going through this. It's SO difficult. My mother and your father sound very similar, but she had multiple issues. She was only 68 when she died of end stage dementia. The complications from dementia are what finally killed her, but it could also have been the complications from Parkinsons. Her swallowing became weaker and weaker, she started to choke, and it got to the point that no matter WHAT I did, every two weeks she ended up in the ER with either a UTI, which affected her dementia and put her in a comatose state, or sepsis. She became a human pin cushion and we finally decided not to put her through that anymore, so we placed her on Hospice. Also, the antibiotics were killing her and making her colitis cause her to live in such pain. Still, even though she was sicker than your father and suffering, it was a very, very difficult choice to make.

 

Only your family can decide when the right time for Hospice is. Once you do make that decision, her Medicare and other insurance will switch and your father will no longer receive anything for his health improvement, comfort is their only goal. And let me say, I am tormented to this day that we didn't know to call in Hospice for my father. I think this will haunt me for the rest of my life. His death would have been so much more peaceful had we called in Hospice. Both my parents lived in an assisted living facility, separate units. He had emphysema but we truly didn't know why his decline was so fast until hours before he died and we found out that his entire chest cavity was consumed by a cancerous mass. It was a blessing, my father never could have made it through cancer treatments. When he moved into assisted living with my mother, he needed little care but my mother was completely immobile and unable to do anything for herself but feed herself. She, too, ate like a moose until the final three months of her life. But her medical complications became so great. Your father will become prone to infections in the end stages, as well as become a choke hazard. And although my parents were in a facility, Hospice would have been extra supportive care for them. Your father will get regular checks with his Hospice nurse that will be above and beyond what he'll get without Hospice. I think he does have to have a life expectancy of 6 months or less to be accepted.

 

Someone had given me great advice here and told me to make sure I like the nurse Hospice sent out. I wish I had the guts to ask for a new nurse for my mother. My sister and I had discussed it but decided to stick with the nurse, which was a mistake. Make sure you're comfortable with the nurses and aides which are sent out. Our Hospice aide was the most helpful, loving woman I'd met. She cried with me many a time. She was so gentle and loving. she had been an aide for 28 years!!! Take all the aide work you can in the facility as well. Your father will get extra assistance, which will benefit him greatly. Hospice aides are so knowledgeable and so full of compassion. I loved all the aides. The will be a tremendous benefit for your father. The extra set of eyes, the staff trained in end of life issues, the extra care will all help your father. I even had the aides lotion and massage my mother. She loved it.

 

Your father is going to become prone to pressure sores. There are wonderful chairs and cushions to help with this. BTW, where are you? I wish I could give my mother's chair to someone who could really use it. It was a special chair which reclines and such. Any chance you're in New England somewhere? Her chair was expensive but worth Every Penny. it really helped with her pressure sores. I switched her position Every Hour to prevent the sores. Any time I was gone for a day and left my mother in the care of my sister or a trusted aide, nobody was as meticulous as I was and my mother suffered pressure sores the few times I did leave her for a day. It was so hard to get rid of them!

 

I felt we had many more benefits with Hospice. They got a wonderful alternating pressure air mattress for her bed once she no longer got up. It helped suck away the moisture and keep her warm but not hot. The alternating pressure helped her not to get anymore sores. It was awesome.

 

Hospice was more informative than any doctor, hospital staff, or facility who ever cared for my mother. There are several Hospice agencies, too, so if you're not happy with one, check into another. We got references from the local hospital.

 

I can't think of anything else right now, but having just lost my mother 5 months ago, everything is still fresh in my mind. If you have any questions at all, please PM me.

 

I'm sorry you're going through this and I wish you and your family peace and comfort in the coming months.

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If I had to pick a reason, it would be money. Insurance often has hospice benefits. Homes have found they can get patients their "extras" at no cost to them. There have been a few rumblings of a "racket".

 

 

 

My parents pay for this home out of pocket because he had no long-term care coverage for a facility. After his hospitalizations, Medicare was paying for the skilled nursing home so that he could get rehab (which he didn't really benefit from) and have a feeding tube short term. But at this point, my mother is paying the cost of all his care, and the cost is based on the services he needs, so if he could benefit from PT, that would be an expense for my Mom, not insurance covered. I am not sure how the nursing home would benefit financially from having Hospice involved, though I guess there could be economic benefits to my Mom. I will ask my sister about that.

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This link might be helpful. :grouphug:

 

I know my Dad could be closer to the end than I like to think. I never ever ever would have believed he would decline as quickly as he has the last couple of months. For several years, his decline was very slow. I keep thinking about moments I have had with him in the last six months that I didn't recognize as "lasts" - like the last time he said, "I love you too, baby" when I told him I love him. I wish I knew which time was the last time:( And honestly, I feel like I am always trying to tell people he's not as bad as it seems.

 

Anyway, that article had good information and I appreciate it.

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I am not sure how the nursing home would benefit financially from having Hospice involved, though I guess there could be economic benefits to my Mom. I will ask my sister about that.

 

If a home does X Y and Z for $$, and someone else can do X for them but they still get $$, then they benefit. Perhaps it is a knee-jerk referral for everyone who isn't expected to go back to his day job. An awful lot of medical care is "mechanical". Some of it I go for...like routinely checking BP, but much of it is the churn of caring for those who alarm the medical world the most: the lost and incompetent. I mean, an office sees the 25 year old who actually doesn't know what to do with a skinned knee a lot more often than, say, me. The system is geared to the lowest common denominator. The LCD gets gets to be the "norm".

 

Or perhaps the home is just borderline in ability to care for your dad and is hinting they really need help, for the price they are being paid.

 

Find out what he needs and what can be provided. And the out of pocket costs. Know the system and pick and chose from there. Ask questions. Once your family sounds like intelligent reasonable people who are actually involved with your dad you may get "the real scoop", not the "I have to advise you do this even though *I* never would, so that you won't sue me after you are mentally deranged by the death of a family member" mentality. Defensive medicine is, well, defensive.

 

:grouphug: As Truman C. said "Life is a moderately interesting play with a very bad third act." I wish you wisdom and confidence in this.

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I can't respond on the 'why' Hospice was recommended, but my FIL passed away a few months ago and had been under the care of Hospice for about 3 months.

 

Can I just say that the people that worked with him were angels? Hospice is so much more wonderful that I had ever known. Now having seen in person what they offer and how they treat their patients....I think it is a truly wonderful organization.

 

I hope, if that's the path you are on, that you have the same experience as we did.

 

Blessings to your family.

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First, I am so sorry for what you are going through. My dh and I have both lost our Dads within the last 4 years so I can feel your pain. My FIL had hospice care in his home prior to his death 4 years ago. The nurse came to help with his medication needs, if he got sick, etc. They also helped my MIL with his daily care. I am providing the link here to the hospice that we worked with just because it has a great FAQ section and I think it is very informative. The doctors must state that in their belief, the patient has less than 6 months. If they live past the six months, care can be extended. Hospice care itself is paid by medicare but if he is in a nursing home, the fees for that will still apply. If you doubt the diagnosis that hospice is necessary, I would really push the doctor for answers because maybe all that is going on is not being communicated to you. We recently went through this with my Dad in that I know the doctors were not telling us everything.

http://www.hospiceofdayton.org/essentials/faq/

 

Good luck to your family. I will remember you in my prayers.

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