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Hi,


I will try to get to the point, I live in New England, my 82 y.o father lives in Florida (formerly from here) hes been there about 6 yrs. He has COPD as well as newly diagnosed lung cancer, (foregoing treatment)


a couple of years ago he fell and broke his femur, and did the hosp/ rehab stint, but went back to living alone (against my wishes) I went there for a few weeks


Last year he was hospitalized again for COPD exacerbation, and while he was hospitalized we packed his belongings up and relinquished his motel room (yes you read that right) this is when he was diagnosed with cancer, he was hospitalized/ rehabbed for a long time I was there 1 month, before discharge we were trying to decide where he was going, my brother is there but is ill-equipped to help with lodging, amongst other things.. I am POA/ HC surrogate. we discussed him coming to NE and living with us but I said he should stay in Florida until winter subsides as to not be a shock to his system, and that in Spring we would revisit the idea so we found an assisted living facility and my dad had been there for 4 months before he went into the hospital again, now he is currently in rehab and discharge is scheduled within 2 weeks, the plan is for hm to go back to assisted living, but.... because of his health and non treating of cancer he will likely be having hospice at some point, the assisted living facility has already talked about it ... I still haven't gone back there YET (it gets costly staying in a hotel ) because im trying to wait until its closer to discharge.


PHEW.. thanks for hanging in if you've read this far, so I will try get to the quandry.. please help me with this i'm lost in my mind


I am really not liking the idea of him having hospice at assisted living, I can assume this means he will likely die there, as his health is declining so is his cognitive ability, his physical ability is limited but hes still able to ambulate moderately with a walker , we will be getting a wheelchair to ease his burden. I have talked with medical staff about bringing him home to NE and they seem to think I would need "permission" from Dr's for him to travel, I don't feel they support this idea, especially the assisted living facility, they have taken it upon themselves to initiate hospice services when he returns, I am feeling very protective and am wanting to "do something" whether it be to bring him home or relocate myself and rent a house and move him in and take care of him (with hospice help)until the time comes. I would be leaving my family here but they are old enough, youngest is a high school senior.


Please help me to get some insight as to this situation, I can't bear the idea of my Dad dying in assisted living.... but realistically will that actually happen ?? the likelihood of him going into the hospital again is relatively high., and my skewed vision about the assisted living facility is hindering my thoughts because they are very money hungry....


help me please ,


Moni

Monimom,
Have you asked your dad what his wishes are? If he wants to stay at the AL, his hospice medications can be scheduled so they could be given. If he cannot afford the NH then it is not an option. You speak with the business office there, they would be able to tell you when and if he can become eligible for Medicaid.
You said something about the likelihood of him returning to the hospital, but if he enters into hospice care, this will not be an option. He will be kept comfortable until the end comes. I would ask if the hospice being considered does "crisis care", meaning that when death is imminent, a nurse will come and be with him continuously to administer any needed meds to keep him comfortable and to communicate with you if you cannot get there in time.
Good luck, and I'm sorry you and your family are going through this terrible dilemma. While I'm sure it would be hard for anyone, being so far away is an additional torture in this already difficult time. Hugs!!
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Reply to katydid1
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If your dad is willing and able to be transported to a facility near you, there's another alternative: non-emergency medical transport. I looked into it when I was researching nursing facilities near my sister's home. It is quite expensive - I was quoted $4,050 for a 766-mile trip, which was all-inclusive (food, beverages, personal care, oxygen administration, etc. en route), and one family member or caregiver may travel with the patient at no additional charge.

Non-emergency medical transport isn't covered by Medicare, so you or your dad would be responsible for all costs. Not sure if private insurance would cover it, either. But I just thought I'd toss it out there as another available option.
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Reply to PeeWee57
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Moving him will need a change in Medicare enrollment so get that arranged. It sounds like he does need hospice. He will soon need 24 hour nursing care as he gets weaker. Hospice meds include controlled substances which are acceptable with COPD and someone to judge when they are to be given. This is something that no assisted living can do and it would be very difficult to hire a RN 24/7.
You best bet is to quickly get him closer to family and decide which family member can take care of him. Is he on oxygen? You will need to speak to his doctor to see if he can fly. Otherwise plan a train trip on overnight
trains.
If you plan on keeping him down south, he may need Medicaid and a nursing home.
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Reply to MACinCT
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Monimom Feb 20, 2019
Thankyou for your reply, I am beginning to get my thoughts in order with all of this the more I think the more I really don't like how I feel about any of it. I spoke briefly to his dr.'s nurse and shes feels flying is out... he is on 2.5 L of O2 24/7

I will be finally making the trip down there, I have been putting it off, I wanted to wait until he was nearing discharge back to the ALF..
I am praying for clarity in this difficult situation
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I'm in Canada so I'm not well versed on navigating the system there, is there no possibility he can be admitted to the nursing home where he is getting rehab? I think that being discharged from rehab just means that insurance coverage stops and you would need to private pay or begin the medicaid process. I think that finding a nursing home in Florida is the most practical option, the logistics of the move and the hoops involved in getting him medicaid where you are vs where he is a current resident would make a move difficult.

(just to add- the social worker at the NH should be a valuable resource for you)
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Reply to cwillie
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No 24/7 nursing support at the AL is a huge red flag, hospice is only supplementary care and the facility must be able to take up the slack. No doubt every extra they do provide will come with a hefty price tag and they still will not be able to provide the level of care he needs/deserves.
(If there is any staff member who you trust to give a straight answer I would ask for their honest opinion about whether this is a good option)
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Monimom Feb 16, 2019
Thank you, No I don't trust their opinion, but the SNF he is in is discharging him without any reservation to this AL facility, and they KNOW they don't have nursing staff 24/7... I am too far logistically to oversee everything , this is partly why I wanted to bring Dad home, (to my state) at least if he were to wind up in a facility I would be able to ensure his needs aren't being overlooked.
So what type of facility would best meet his needs ?? I really don't like the idea of him going back to the ALF... hes been gone from there for 1.5 months and they are still charging me for his "personal" care I don't know how they can...with him physically not being there.
thank you for your help
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In a facility with hospice would seem to be the right answer. I understand you being pulled. I was a distant caregiver to my mother (who passed in December) and as I saw her decline in the past year I was pulled to move closer, or rent a place and looked into both. Mother was in a good NH. Finally I did neither but traveled down as I could and was able to be there the day before she died. The day she died there was rain, then ice and fog and the roads were treacherous, so I didn't make it. You can plan all you like but it doesn't always work out, I think bringing him home would be extremely difficult.

I like the idea of talking to an attorney about medicaid
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Monimom Feb 16, 2019
Thank you for your reply, and my condolences on your moms passing.
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So, he has assets? Why can't they be used for his care?

Have you talked to a certified eldercare attorney about Medicaid?
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Reply to BarbBrooklyn
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Have you looked into dad being discharged to skilled nursing facilit/rehab center as opposed to an Assisted Living facility?

If dad is on Hospice ( the best service EVER) he will need 24/7 care by someone and most ALs are not set up to do that.

Just my opinion, if dad was living in a motel, I wouldn't be fussing about him passing away in a well staffed medical facility. (((((Hugs)))))))))
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Monimom Feb 15, 2019
Actually that's where he is currently, and he is happy with the care, and we are happy with him being there looked after, I was hoping he could stay, but I was told that its nearly 10k per month , and he doesn't financially qualify for Medicaid, .
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I saw brief mention of a brother - is he in living Florida or there anyone close enough to be an advocate for your father? My only concern would be whether this particular AL is really equipped to offer adequate care for your father, I've heard too many stories where administrators promise the moon and deliver very little, and I've also read of hospice providers who are not up to par so I think some kind of first hand oversight is needed.
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Monimom Feb 15, 2019
Yes my brother is there, he see's my dad daily, but my brother has some of his own issues and he's not the most dependable for any major issues.
I am very aware of how AL facility swoon then its different, I have seen it with this one, I too am a bit concerned, he has been found going to the dining hall without his oxygen on, and nothing has been done, and it really infuriates me that if he can't make it to the dining hall to eat he has to wait over an hour after they serve the diners before they can bring him a meal, this is what leads me to feel the need to "be with him", not easy that's for sure,
Thank you for your reply
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I totally agree with Windyridge. My brother and Uncle died very peacefully with hospice care. God bless both of you. It’s hard. Your dad is blessed to have a daughter who loves him so dearly.
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Reply to NeedHelpWithMom
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Monimom Feb 15, 2019
Thank you, this is indeed a torture
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It would be best for your dad to stay in AL and get hospice started. He will get much better care than you can provide at home. Hospice is not all inclusive care. You still need bodies to help.

my mom died under hospice care in assisted living. She got good care from the staff and hospice folks. I could not have replicated that level of care at home.

As the body and mind shut down people are usually not very aware of their surroundings, if at all. We all say we want to die at home. Personally , I don’t want my living room turned into a hospital and make my wife go through that.
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Monimom Feb 15, 2019
I understand, its just very difficult being 1300 miles away, thank you for your reply
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