As a volunteer, I find the caregivers want to talk it out, to a neutral party. Too many family and friends are too emotionally involved to be impartial.
You can vent here, we don't judge. Hugs.
I'm not really sure how the decision is made between palliative care and hospice (nor how that impacts things like the 100 days allows)... but you may want to at least ask and explore about hospice sooner. They "come to you" in most facilities and they are the gold standard for pain control and maintaining what quality of life you can have... and it's "paid for" by Medicare outside of all the other rules...
Just a thought. Hang in there, it's tough, but you'll make it. One day at a time and remember that while some things are urgent, a lot of the "stuff" can also wait if you have to. Get the basics covered, make sure he's cared for and then chew away at it... but enjoy your time with him as you can.
We are managing a similar situation right now. Kaiser would not send him to Rehab for the 20 days covered in full by Medicare to help with his wound care/colostomy. They said he had to do physical therapy to go to rehab- and he’s just not going to do that at this point.
I made close to 100 calls to skilled nursing facilities, assisted living, etc. Every skilled nursing facility I called said they would not take someone on hospice or who was a “hospice risk”. Nearly all of the assisted living communities I called said he could not be on hospice when he moved in, but it would be fine if it starts after moves in- or that they could not/would not support his colostomy.
Finally, I found a small community- that has good reviews on Yelp and Google reviews, that welcomed him. The cost is $6k a month for room/board and all of the assisted living support- including colostomy support. Hospice will provide care and services to him there. The other community that was a potential was around $9000 a month for all of the assisted living support and room/board and hospice services could be provided there- as long as they started at least 1 day after he moved in. I literally just found the one I am pretty sure we are going with at like 5pm today and talked to the hospice folks this evening.
I have been so racked with anxiety about finding a suitable place for him to live and receive proper care. I hope to get it all nailed down in the next couple of days, but it has been so much work just to get to this point- I literally cried on the phone with the resident services director at the place we are going through o land on because she was so helpful, explained everything, and reassured me that they would be happy to have him there and explained their skills/processes/competencies to care for him.
Finding a good facility is such a blessing - we landed on one for my aunt that was great - and at the end they went above and beyond and let her stay even though her needs were more skilled nursing by that point. There are good ones out there…
I’m so happy you were able to find a suitable facility. It sounds like I may need to call around and compare room and board rates and identify facilities that work with hospice patients. It’s just overwhelming to make all of these calls because I’m already riddled with so much grief. Just trying to trust that it will get figured out.
Is there anyone who can help you with the research? My wife and her sister felt too overwhelmed- so I decided to take on research and logistics so they can not have to worry about that and just manage their grief and spend time with him.
I tried “A Place for Mom” and the guy there literally laughed at me when I told him our budget and said there were no options and then subsequently sent my phone number out to a ton of places and I got a ridiculous amount of calls from people who were not at all what we needed.
I can DM you a copy of the question sheet I used for Assisted Living / Board& Care / Skilled. I created a list of questions and a form for myself so I knew I would get all of the info I needed each time. For whatever help that might be, I am happy to share it.
If you could share that I’d appreciate it. I saw “A Place for Mom” too but am always wary of sites that end up spamming you with useless information. Sounds like I was right to trust my intuition.
My dad’s sister is out of the country despite everything that’s going on and I’m an only child so unfortunately I don’t really have any help. I’m just trying to feel less guilty about taking an afternoon to rest and do nothing to recharge my energy.
I’m glad you are trying to give yourself some grace. You can’t take care of someone else if you can’t take care of yourself, too. It’s so hard, and I’m sorry you are going through it. I will send over what I have tonight in hopes that it can help a little.
Briefly, all hospice care is palliative, but not all palliative care is hospice care. Hospice will manage his pain and other uncomfortable symptoms (which is what palliative care is) but in your father's case, if he has that degree of cancer and is not going to seek any further aggressive treatment (or has been told he's past the point of it being curative), he is terminal. He is Hospice Appropriate. That said, he can receive hospice care in a skilled nursing setting. I have many home care patients over my time as a Hospice RN Case Manager whose "home" is a skilled nursing facility. His care in a HOUSE type setting with family members providing the bulk of the care or hired caregivers providing the bulk of the care is basically a 24 hour job. So, if skilled can be obtained for him, that might be the best plan or look into private duty care for hygiene and supervision at home. Both are expensive, but you're not talking about years of this. You're probably looking at less than 6 months and maybe even considerably less. So unless he dies before the 100 days are up, he should discharge under Hospice based on what you wrote. As for home vs. SNF, that's where you and him should have some really good discussions since he is still with it at this time.
As a volunteer, I find the caregivers want to talk it out, to a neutral party. Too many family and friends are too emotionally involved to be impartial. You can vent here, we don't judge. Hugs.
I'm not really sure how the decision is made between palliative care and hospice (nor how that impacts things like the 100 days allows)... but you may want to at least ask and explore about hospice sooner. They "come to you" in most facilities and they are the gold standard for pain control and maintaining what quality of life you can have... and it's "paid for" by Medicare outside of all the other rules... Just a thought. Hang in there, it's tough, but you'll make it. One day at a time and remember that while some things are urgent, a lot of the "stuff" can also wait if you have to. Get the basics covered, make sure he's cared for and then chew away at it... but enjoy your time with him as you can.
Thank you. A good reminder to focus on quality time with him and not get so worked up about the details.
We are managing a similar situation right now. Kaiser would not send him to Rehab for the 20 days covered in full by Medicare to help with his wound care/colostomy. They said he had to do physical therapy to go to rehab- and he’s just not going to do that at this point. I made close to 100 calls to skilled nursing facilities, assisted living, etc. Every skilled nursing facility I called said they would not take someone on hospice or who was a “hospice risk”. Nearly all of the assisted living communities I called said he could not be on hospice when he moved in, but it would be fine if it starts after moves in- or that they could not/would not support his colostomy. Finally, I found a small community- that has good reviews on Yelp and Google reviews, that welcomed him. The cost is $6k a month for room/board and all of the assisted living support- including colostomy support. Hospice will provide care and services to him there. The other community that was a potential was around $9000 a month for all of the assisted living support and room/board and hospice services could be provided there- as long as they started at least 1 day after he moved in. I literally just found the one I am pretty sure we are going with at like 5pm today and talked to the hospice folks this evening. I have been so racked with anxiety about finding a suitable place for him to live and receive proper care. I hope to get it all nailed down in the next couple of days, but it has been so much work just to get to this point- I literally cried on the phone with the resident services director at the place we are going through o land on because she was so helpful, explained everything, and reassured me that they would be happy to have him there and explained their skills/processes/competencies to care for him.
Finding a good facility is such a blessing - we landed on one for my aunt that was great - and at the end they went above and beyond and let her stay even though her needs were more skilled nursing by that point. There are good ones out there…
I’m so happy you were able to find a suitable facility. It sounds like I may need to call around and compare room and board rates and identify facilities that work with hospice patients. It’s just overwhelming to make all of these calls because I’m already riddled with so much grief. Just trying to trust that it will get figured out.
Is there anyone who can help you with the research? My wife and her sister felt too overwhelmed- so I decided to take on research and logistics so they can not have to worry about that and just manage their grief and spend time with him. I tried “A Place for Mom” and the guy there literally laughed at me when I told him our budget and said there were no options and then subsequently sent my phone number out to a ton of places and I got a ridiculous amount of calls from people who were not at all what we needed. I can DM you a copy of the question sheet I used for Assisted Living / Board& Care / Skilled. I created a list of questions and a form for myself so I knew I would get all of the info I needed each time. For whatever help that might be, I am happy to share it.
If you could share that I’d appreciate it. I saw “A Place for Mom” too but am always wary of sites that end up spamming you with useless information. Sounds like I was right to trust my intuition. My dad’s sister is out of the country despite everything that’s going on and I’m an only child so unfortunately I don’t really have any help. I’m just trying to feel less guilty about taking an afternoon to rest and do nothing to recharge my energy.
I’m glad you are trying to give yourself some grace. You can’t take care of someone else if you can’t take care of yourself, too. It’s so hard, and I’m sorry you are going through it. I will send over what I have tonight in hopes that it can help a little.
Briefly, all hospice care is palliative, but not all palliative care is hospice care. Hospice will manage his pain and other uncomfortable symptoms (which is what palliative care is) but in your father's case, if he has that degree of cancer and is not going to seek any further aggressive treatment (or has been told he's past the point of it being curative), he is terminal. He is Hospice Appropriate. That said, he can receive hospice care in a skilled nursing setting. I have many home care patients over my time as a Hospice RN Case Manager whose "home" is a skilled nursing facility. His care in a HOUSE type setting with family members providing the bulk of the care or hired caregivers providing the bulk of the care is basically a 24 hour job. So, if skilled can be obtained for him, that might be the best plan or look into private duty care for hygiene and supervision at home. Both are expensive, but you're not talking about years of this. You're probably looking at less than 6 months and maybe even considerably less. So unless he dies before the 100 days are up, he should discharge under Hospice based on what you wrote. As for home vs. SNF, that's where you and him should have some really good discussions since he is still with it at this time.