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Topic Anyone have experience with Palliative Care and Hospice? Go to previous topic Go to next topic Go to higher level

By rajenriver On 2008.01.31 14:06
My FIL's appt didn't go so well as far as his progression is concerned. He did not have a good day yesterday. He was very confused and was doing things that were odd. He was digging in my glove compartment for who knows what. At the assisted living, he went to lunch with his afghan and sat in front of the fireplace rather than sitting at the table. He didn't know what month, day or year it was. He didn't know his son and daughter's birth months. Just lots of stuff that would not have been a problem a month ago. He has had lots of issues with dementia, but has been able to hide them pretty well until yesterday.

I guess that it was good that he wasn't able to hide if from his neurologist. She said she could give him more PD meds, but it would make the dementia worse. We opted to leave his meds the same. She did suggest to use a pain patch rather than the PRN vicoden he is taking today. We will look into changing that prescription with his geriatric Dr.

Anyway, the nurse at the assisted living said that we may consider Hospice care. She said that if they renew the care 3 times, then it is allowed as a continuing care. He has lost 20+ pounds this month because he is not eating. Now if they offered chocolate milk and ice cream for every meal I am sure he wouldn't miss any meals! The apathy and fatigue he is experiencing is keeping him from going to all the meals. I am going to contact Hospice and see if any of this makes sense. The nurse at the assisted living said that they could not help him eat without a waiver from the state. They could get that waiver through hospice. It has something to do with the requlations they fall under to qualify only as assisted living.

Delmar's home is at this assisted living. He likes the staff there and they have been so helpful in going on and beyond to help him. They want to keep him out of long term care, too.

I am attaching a link to an interesting article on Palliative care that I am going to discuss with Hospice when I call them tonight. Does anyone have any experience with this? I had always understood that Hospice doesn't get involved until you think you are within 6 months of death.

Blessings, all!

By Newcaregiver On 2008.01.31 15:16
rajenriver: My father died 3 years ago from Alzheimer's disease. I was his legal guardian and he lived at an assisted living center also. Although his disease is different, the progression was probably much the same as what you are describing. Hospice care and regulations may be different from state to state. My father was on hospice four times. He would lose weight and not want to go to the dining area and withdraw. At that point we would consult with assisted living, doctors and Hospice and they would put him on Hospice. He would respond so positively to Hospice and their added care that he would rally and gain weight and get better. They would then take him off hospice. This happened three times if I am remembering correctly (I have found over the last three years that I have begun to forget those horrible days and my happy memories of my Dad are re-emerging - I am very thankful for this!). Hospice was wonderful in my experience with my Dad. So responsive and caring and so helpful to me also. I think you will find them to be a thankful addition to your FIL's care. My father finally had a heart attack and kidney failure. Pretty much all at one time so that he went on Hospice in the hospital and passed away a week later. Once again, this was just a horrible time, but I was blessed with being with him throughout this and Hospice was just wonderful. I think you will find Hospice to be wonderfully supportive and will address and answer all of your questions and help alleviate your worries. Best of luck to you!

By rajenriver On 2008.01.31 16:32
So were you able to keep you dad in assisted living the whole time? The nurse at my FIL's assisted living said that there would be only a few reasons that would make him have to move - If his mobility got to the point that it would take 2 people to move him, if his incontenance became uncontrollable (which she said is very manageable today), or if he started displaying unmanageable/unacceptable behaviors. If we are able to get a waiver that would allow them to make sure he got to meals and were able to allow him a special diet, I think that we would be able to better manage his nutrition. He needs soft foods due to his PD and the fact he has no teeth. I hate to have this be the reason to move him to a higher level of care.

By annwood On 2008.01.31 20:20
Hi, I have had first hand experience with Hospice and they were WONDERFUL. In my case they came to my home, but they will also go to Assisted Living, Nursing Homes or as you know they have their own facility. They told me that in-patient Hospice is generally when the patient is going to only live another 1 or 2 weeks. They no longer have the 6 month rule - the patient only has to have a progressive, incurable disease with a limited life expectancy. If it goes on beyond 6 months they recertify it. In the home, Hospice paid for all of my husband's medications, diapers, catheters, bandages, etc. They were incredible. I am told that they are good to have in a nursing home facility because it is a second pair of eyes making sure the patient is being treated well. The last week of his life, when it was obvious he was actively dying, they provided nursing care. They pronounced him when he died, cleared everything with the Coroner's Office and called the undertaker. As you can tell I am sold on this organization.

By Ilovemydog On 2008.01.31 20:53
Hospice nurses are Angels sent from Heaven

By Newcaregiver On 2008.02.01 11:42
Rajenriver: I agree completely with Ann. Yes. My father was allowed to stay in assisted living with no problem during his first hospice care episodes. I agree that being under Hospice does give more watchful eyes for the patient's care. It was very helpful and I felt so supported when he was on hospice. After his heart attack he was taken to the hospital and stayed there under hospice care for the week before he passed away. Hospice is just wonderful. Also, they called me weekly after my father passed away to check on me. For at least 2 or 3 months and then kept me in the loop by sending a newsletter monthly for a full year.

By rajenriver On 2008.02.01 12:00
The nurse at the assisted living is working with Hospice right now for another resident. Her understanding is that the person under care needs to have someone with them constantly and when a hospice companion cannot be with them, then a family member needs to be with them.

I need to understand if this is really the case for someone like my FIL.

By Newcaregiver On 2008.02.01 14:26
Rajenriver: that could be. I don't know. My father was technically under full nursing care at that time in the nursing home wing of his center. That meant that he was under full care at the time he was went on Hospice. I don't really know about those rules and, again, may vary from state to state. I am not sure.

By annwood On 2008.02.01 14:43
It sounds to me that the constant supervision is the facility's rule and not Hospice. I did not find that to be the case when my husband was in the hospital nor when he was at home with Hospice.

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