Ok, so according to the social worker, and the doc from the Hopkins/Bayview team (who finally called me,) the plan is to discharge Jeff on Friday. The ALF rep has just received 40 pages of notes by fax and is planning to visit Jeff tomorrow to ascertain whether he is in the category they can deal with.
Thus would be the most unwelcome snafu--for them to decline. Luckily-ish, everyone from the hospital team to the ALF team knows that this weekend is the worst possible time for me to manage any emergency changes of plans. Daughter is graduating from college on Saturday (the day AFTER Jeff's planned discharge,) and on Sunday, son must be driven from here in Maryland to his college in North Carolina for a summer term. By me, as it appears to be an equally swamped weekend for my usual backup team of daughters and mother. I've heard tell of Marilyn's 11th hour scramble to find an alternative when her selected ALF said "no." I don't have any 11th hours this weekend.
Jeff is on Zoloft and Atavan, with an extra Atavan chaser or some Zyprexa as PRN choices. The doc expects this combo will work "for several months." Aye yi yi...how about forever? I guess there's no such thing. I do know that he can be readmitted directly to Hopkins/Bayview if need be. But, gee whiz I don't want to ever get that kind of phone call from Sunrise again..."could you come in [so Jeff can try some Sumo moves on you?]"
Still, there's nothing I'd like more than to have him nearby where I can be present as needed and try to include him in life again to some very limited degree.
This stuff is so scary. I never knew or thought about the scary part during our years of getting gradually more and more cognitively impaired while remaining otherwise placid.
Now about a dozen and a half of us here seem to be in the thick of it.
Oh Emily, sounds like your plate is overflowing! I know that you have been anxious to have Jeff get the right “cocktail” & go back to ALF, but it sounds like this is not the best time for that to happen. I know that your head is so full of what you have to do that this news is probably almost sending you over the edge. I'll pray that everything works out for you. You deserve a break!
emily, can you discuss Jeff's discharge with them and delay it until Monday? I say this not because you have an overflowing weekend but because from personal experience to have someone discharged on the cusp of a weekend is not the best time. The staff is typically less robust and the routines are somewhat changed due to the often decreased staffing level. Also Jeff will be going to someplace that may no longer be familiar to him and have issues adjusting, particularly since he was only in the ALF for < 2 weeks and he may think he's going home.
AND you have a busy weekend with no time for an 11th hour course correction!
They DO know that if Sunrise refuses, there is little I can do until after Sunday. So if I tell them that they'll just have to evacuate him onto the street until I get back from N.C., they'll probably realize they have to keep him.
My point was why have the possibility of Sunrise refusing , say on Thursday and they still plan on discharging him on Friday with no place to go. Can't you request a Monday discharge?
Sigh...I don't know LFL. They wanted to do it on Thursday, but deferred due to my having to take my son for an oral surgery procedure on Thursday. Sunrise does know to inform me ASAP if they feel--as of their visit tomorrow--that there is any problem. I suppose that a worse case scenario is that they'd say "no" tomorrow, and I'd have 2 days to scramble to find Jeff a place, then I could refuse to take him until the space is available. You know though, I'm just going to refrain from freaking until after Sunrise visits. Then it's day by day. If all goes swimmingly, I'm ok with the Friday discharge.
Emily--here's one question--does Sunrise, in fact, take new residents on Fridays? Steve's facility does not, for the reasons LFL stated above. So, do I understand correctly, Bayview is giving you one extra day (discharge on Fri. vs Thurs) to accommodate your son's oral surgery? Based on my experience when I hit the refusal by the ALF to accept Steve, that was all they'd give me. They chalked up the problem as Medicare refusing to pay additional days; I could keep him at Bayview longer, if I wanted it to be private pay. (The charges added up to over $1,000/day, so that wasn't a good option.) Just wanted you to have this info.
My guess is that with the economy the way it is, Sunrise will probably take him back. Private pay facilities are apparently hurting because families are keeping people at home more often. I know what you're going through--it's a bummer. You have done everything right and still, things are so uncertain.
emily I have nothing to add, except to say I appreciate this information for all of us to learn what can happen, but firstly, that I hope and hope you get to be with your kids during these important milestones in life.
No kidding so many of you are in the thick of it. You sound so strong and centered through it all though, I would be freaking and swearing and looking for a drink.
Wishing all the best for you and once again, thank you for letting us know.
Deep breaths Emily ((Hugs)) One day at a time is all you can handle right now. They will not evict him to the street! One way or another he will be safe and well taken care of. Take the time to enjoy your children... I hope you have a wonderful time at your daughter's graduation. I imagine you are a mix of emotions from pride to wishing her Dad could be there too... my thoughts are with you ♥♥
I don't understand what you are saying LFL? The residents needs are the same every single day, be it a week day or a weekend day. Where Lynn is there is no decreased staff or slack routines on the weekends. Are ALF's THAT different than skilled nursing homes?
I did not notice any particular difference at Jeff's ALF (in the 2 weeks he was there!) between weekdays and weekends. There IS a difference in the hospital setting, in that the docs are not making rounds, making med changes (in general,) so "forward progress" doesn't really occur on Saturday or Sunday.
It has been two weeks since H left here. Since then, hospital to snf rehab. Every day I fear, even though I have been told here, and otherwise, that it cannot happen, is that the taxi is going to pull up, the gurney will come out and the message will be, here he is. Does it make any sense? I hope not but that does not mean that I am not scared.
I have been told that the phrase- after hours, weekends, whatever- is- "I cannot provide a safe environment for him". Once this is said, no dc can happen for at least 48 hours.
As Nikki mentioned, I would also like to know what is the difference between nf and alf.
Tonight, after a call from the snf that was not encouraging to say the least, I tired to contact the dc hospital. Not productive to say the least!
I can only speak from the perspective of my husband's ALF, but it is the administrative/support staff that is lower on the weekends. During the week the admin staff consists of a director, assistant director, marketing person, food services manager, building services person, activities person and nurse always on duty. In addition, there's a part-time receptionist and a custodian, various housekeeping folks. Over the weekends, the admin staff rotates, and there is usually one of them, plus a nurse (if the head nurse is on duty, he is the only "manager" present.) As far as I can tell, only the building services person and marketing person don't take a turn with the weekend duty.
All of this is transparent, in terms of care for the residents. HOWEVER, if a crisis should occur with any resident(s) on the weekend, I can see how it would be more difficult to resolve with only one admin person there. When there have been problems during the week, I've seen them all roll up their sleeves (even the receptionist and the custodian) to help. That's one of the reasons I'm so impressed with the place--the teamwork. Consequently, I think that's why new admissions are done Mon. thru Thurs.
The level of staff doing direct care is the same, all days of the week. The doctors who visit, as well as their NP, only come by on weekdays.
I have been told that this pattern is the standard in facilities in this area.
Thanks, Marilyn, that's what I meant and sometimes the weekend care people are different from those employed during the week. And as you say, although it doesn't appear the adminsitrative staffing at a lower level should be an issue, it can become one if there's some type of crisis or emergency.
Hopefully hands on staff would be constant. If management rotates being MOD (manager on duty) it gives them the opportunity to meet the residents and staff on a personal level. Hopefully they will provide personal care when needed and meet the familes to address issues. I agree that week ends are not a good time for new admissions. As a discharge planner I know the things that can go wrong.
Well, the Sunrise rep was here at the hospital. I passed her on the way in. Jeff apparently passed the docility test and I may return him to the ALF on Friday. Let's just hope that it's such a lovely change from 5.5 weeks in the geripsych unit that it will feel like a warm acceptable home!
So glad to hear Jeff can return to the ALF, Emily. I'll be praying for his calm, so that you can enjoy your weekend. Congratulations on your daughters graduation - looks like a beautiful weekend for it on the east coast!
So glad to hear the great news Emily. Since being introduced into the nursing home environment, it is real important that we as caregivers feel comfortable when leaving our loved one there. I pray that you and Jeff find peace and that you have a safe, happy trip. Take care, all will be fine.......
They were ready for me to take Jeff and go this morning...room clean as a whistle, and his stuff bagged up. I played and sang Man of La Mancha soundtrack to him on the 40 minute ride back to his ALF. Now he's there.
We'll see how it goes. I think the environment there is actually a bit more busy and visually confusing than the hospital wing was, so I'm afraid he's going to be fairly bewildered for a while. I helped him with his lunch, and it's clear that he is not going to be a total self-feeder in the foreseeable future, and probably not ever, so I'm still not sure how they will manage that. Still, it was nice how all the staff members greeted him with such a warm welcome back. I don't think he remembers a thing. At the moment he has no roommate, since Mr. S (who was pretty much bedbound) died yesterday apparently.
Anyway, I'm hoping for the best of course, and hope any need for change of care location can be discussed with enough advance notice for me to deal with it comfortably.
I'll tell you what...placement or home, stage 3 or stage 7, young or old...it's never over 'til it's over. But you all knew that.
Emily, I hope Jeff isn’t too overwhelmed and is able to settle in calmly. I have no experience with ALF’s, but at the nursing home where Lynn is they feed many of the residents. I would think they would help him as much as he needs, at least I certainly hope they will! I too hope you have a great weekend, and enjoy your daughter’s graduation ((hugs))
Great News Emily........ just what you needed,. I am praying for both you and your dh to have a positive, happy, weekend...... Happy Mothers Day to ya too......
A day or so before Jeff's discharge from the geripsych hospital, I overhead a conversation between a physician and family members of a patient across the hall. The man's children were hoping that he'd be able to resume some of his former activities, and the MD said something like this: "There are very few patients who leave after a stay here at the same level of function as when they came in."
It was interesting and sad to think about, but undoubtedly accurate. If someone had a long-term stay for med control, that person had almost certainly hit a turning point in his/her mental status that precipitated the behavioral crisis (so you have a brain already in transition.) Add to that the suppressive effects of whatever meds get the behavior under control for now.
Jeff is now back at his ALF as one of the lesser-functioning residents. There are a few who are pretty much wheelchair bound and require feeding. Jeff is ambulatory, but is otherwise unable to comprehend any but the simplest questions, and has a hard time speaking in phrases that make any sense. He cannot feed himself at all, unless it's something like a roll or hotdog which can be placed in his hand. Otherwise someone must use utensils to feed him. If not, he eats air, his fingers, or the napkin which is in his lap. I try to show up to help with some meals, but not all.
I took him to Trader Joe's with me today, to buy apples for his fridge, and realized I'm very glad I don't need to take him grocery shopping anymore. He does not steer easily, or understand which way I need him to turn. But maybe just some rides in the car, without an agenda, will be good.
I am amazed at how rapidly this disease can change people. It is hard to believe I took him to Disney World with me in December. I think that, for now, he is as content where he is as he would be at home. There's some peace in that.
Emily--when I put Steve into the ALF last August, I had planned to take him out periodically. I quickly saw that he adapted, and did fine there in the safe, dementia-oriented environment. I realized that taking him out would really be for me rather than him, he is content within those walls. Occasionally, they do take him out for ice cream, but I truly believe that he'd be just as happy sitting in the ALF, eating ice cream there. It is a big deal to come to that realization (at least for me it was).
Marilyn, the realization that I'm working on is that home is not meaningful to him. On Saturday night I struggled with a big bout of wistfulness and thoughts that I should just bring him home, let him sit in a chair here, and get him caregivers.
Then I think back to the months leading up to my moving him, and recall that he'd lost touch with here/home as a recognizable place. That was a big part of why the timing worked out the way it did. Visiting with him and observing him today, I recognized that this is still true. Whether he's feeling bewildered, tired, content, peaceful, anything--it's all coming from his head. If he is fed and cared for, there is no particular benefit he would be deriving from sitting here versus on the chair at Sunrise.
It's just that old ongoing caregiver internal struggle--to accept that there's not really any major thing you can do to make it better.
Glad that things seem to be working out Emily. DH is in a NH where it has seemed fairly ok until YESTERDAY..20 minutes before I needed to be at the closing for the sale of my mom's home. The CALL from the NH social worker..saying its not 'an emergency' BUT there was an incident this morning. We are investigating..but your DH HIT another resident earlier and we wanted to let you know that he possibly needs to go to a Geripsych hospital to have his meds adjusted. The manager was not there. The nurses were eagerly telling me that it would be best to have the meds adjusted and THEN he could probably come back. (probably?) My question..did he HAVE his meds last night? (they didn't know).. Did he get his meds this morning? (again, not sure).. He HIT a lady in the room next door? He was in HER ROOM? Well yes, but things were so hectic with getting everyone up and ready for breakfast. NO ONE really knows what happened. I was blindsided completely.. Barely breathing when they said, 'we are talking about having him moved in a matter of hours rather than DAYS.. whattttt???? When I got to the NH. He was with a sitter,sound asleep. I talked to the nurses for over an hour. Later I saw him walking with the sitter in the hallway eating a cookie. Seemed fine and happy.
Is it time for a geripsych unit med adjustment OR is it time for someone to supervise, make sure he gets his meds and HELP him? The NH assured me they have 'enough staff' to take care of him. But now its time for geripsych? In one sense I understand. They don't have the luxury of waiting to see if a med works or not. He can't be hitting people for any reason. And yet, if no one can tell me for a fact that he is being supervised and given his medications RIGHT NOW, its hard to imagine putting him through that kind of thing but maybe I'll have a clearer head today.. right now its a muddle
First you want to know if he has had his meds. Are you paying extra for them giving him his medications? Insist on seeing the records for that night and the next morning. If they administer meds I am sure they must keep records.
Thank you paulc. Yes they keep records, but didn't have the information at hand. I asked those questions specifically. It was as if the nurses had determined the course of events and those questions weren't important to 'their investigation' of what happened. I think I'm just glad this morning to see that Emily's experience seemed to work out ok.
That is worrisome Judy--Yes, I can see no point in a "med adjustment" if the problem turns out to be he didn't have the meds he's already supposed to be taking, so that is the obvious first question!
Judy, I am sorry this happened and know the stress it causes. Obviously the staff at the the NH has to be equipped to answer your questions before they send him to a hospital for med adjustment. Can you talk to the Director of the NH to get the answers you need to make any decisions and to make sure your DH is being supervised properly?
I don't doubt that their policy is to remove the resident as soon as possible and then make a decision as to wheter or not they can return later. I'm sure it's about their liability. I know when DH escaped from the ALF at 11:00 pm, they met me at the front door and advised me that he could not return and that they had the police take him to the hospital's psych ward. I was under such stress at the time and they were coldly matter of fact. They packed his belongings the next day ad called me to pick them up.
I have found a weekend of meds. (a total of twenty-one, including one for BP. Aricept, 3000 grams of Tylenol, Flomax, and Trazodone for sleep) sitting on the countertop in my husband's bathroom in the Care Facility. All of these were charted as given. Variations on this med problem continued no matter how I tried to solve the problem, and I finally had to move him to another facility.