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My eternal search for help with Ray



In between never ending doctor visits lately, we have also visited the top (to me) day care facilities in our area. The first, a highly regarded SNF in a wonderful and convenient location, I have already discussed. Here is what we have done since then.


On the advice of the original SNF supervisor, we consequently toured the Veterans facilitity, eqidistant but in the opposite direction (half hour or so, depending on traffic). Turns out it's not part of the VA, but a state run home that is only open to veterans and their spouses. Which isn't a bad thing, from what I've seen. They became the first ones to inform me that day care is totally separate from in-home care, and that the "Lombardi Program" (called "Money follows the Person" in most other states, paying in full for care) does not automatically transfer from in-home to day care. The Dominican Sisters could transfer the rights but still had to be in charge, and would still send their nurse to our house weekly plus maybe the social worker too. The biggest problem with that being, I took Ray home from his EEG test at the hospital AMA, which automatically removed us from their list. I could get back on with a note from our doctor, saying he's OK now, so I went ahead and arranged for that. Thought I was done with them! Asked about the possibility of an in-home aide at this point, but they didn't give me much hope. I didn't realize when I signed up with this particular agency that it was so cut and dried,and I was tied to them for eternity.


So we toured the Veterans. It was mostly men, a couple of women. The patients seemed a lot more outgoing, several approached Ray to greet him. They provide lunch and therapy, doctors and nurses on board; this too is a "medical model" program. She warned me that Ray would be first on the bus and last off; approximately an hour and a half each way on top of the seven hour day. We made another appointment next week to finalize the deal, but I did so only to have a deadline. As we drove home, Ray seemed to realize this was something I was serious about and got very quiet. When we got home, he sat in the den, no lights or TV, and seemed distraught. I tried to see it from his view and it was very depressing, to tell the truth. Most of the people in these places seem to have some type of dementia and don't really know what they're missing. Ray is a rare creature in that regard. He can't get out himself but he does like what freedom he has.


The funny thing, this lady asked why we hadn't talked to our rehab place, since we're so familiar with them. As I've mentioned before, they are TBI only, mostly younger, and Ray has been going almost since they opened, so is very friendly with the staff and long term patients. I got in touch with the owner and we went over the details. I knew it was more free form, and it is for a reason. It is what they call "social model". You bring your own lunch and come and go as you please to some extent. I know they have lots of activities, despite some of the participants being close to comatose; but many also hang out in the parking lot smoking if they like, and Ray is always looking at them enviously. I can smell trouble already.


Meanwhile our trip to Georgia is finalized, Ray's old friend booked us on Amtrak, Penn Station NYC/Atlanta both ways, then we will rent a car to get down to my brothers and back. Three days approximately at each place. Due to the fact that our friend exclusively uses them, she knew there were decent handicap facilities; turns out there is an entire coach with double sized seats and bathrooms just for us, and they will automatically go out of their way to assist us in boarding and everything else, as we are booked as "handicapped". In Penn Station that will be a big deal. So glad we had this option: Ray is a railroad nut and we have done many Amtrak journeys throughout the country, most longer than this one, so I see smooth sailing ahead. I will not be making any kind of long term decisions until we get back, plus then a week later taking care of the neighborhood yard sale which somehow I ended up in charge of. At least now I know the score, but unfortunately it might be zero.


The best news is that Pat, our angel, has resurfaced and is again leaving little gifts on our doorstep almost daily. She had to disconnect her cell due to some banking glitch but I have the new number now. I can count on her to watch the cats and the house while we're gone, and for that I couldn't be more grateful.


Recommended Comments

Finding what care you need, on the day that you need it, is hard. As you know I went for years with little help and then when I really needed help I didn't get it. So find the best you can that works in with what you can afford and Ray's needs and accept that, knowing you can change your mind if you have to.


My Ray loved to start the day with the newspaper so at Daycare he was always first to get it even when they knew he could no longer read, it just gave him something to do until he felt prepared to socialize. See if you can find a similar icebreaker for your Ray. I loved the Daycare people Ray had, they were so caring.


Good luck with your holiday plans, I love train travel too and intend to do a lot more of that next year.



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