Okay, here's the situation: 93-year-old beloved mother, who lives with me, developed pneumonia and ended up in the hospital with one complication after another (worsening of CHF and kidney disease as a result, diarrhea from the antibiotics, a UTI from the diarrhea, then "hospital psychosis" and delirium on top of it all, as she has underlying brain damage/vascular dementia). Then she stops eating/drinking -- although expressing that she wanted to live -- and gets a PEG tube placed. At that point, her time is up and Medicare is ready to discharge her. At this point, she still had out-of-control diarrhea, was essentially bedridden, still delirious, with open sores from the month-long diarrhea, and fresh from surgery from the PEG tube.
Although I SWORE my mother would never go to a SNF, I was too terrified to take her home and brother -- only sibling, who "helped" (somewhat) care for her at home -- was totally for placement, as we were both totally exhausted. Hence, I agreed to a nearby rehab/subacute facility to try to regain function.
At the end of a week, she's now able to help transfer and turn over, can stand and take a few steps, I've learned to do the PEG tube (brother refuses), and she's even begun asking for solid food and eating again...
The choice is: pull her out now since life is uncertain -- esp. at her age and in her condition and we're so very lucky to still have her with us after all this -- or take advantage of the "free" Medicare days? Brother is totally against her coming home, although HE lives elsewhere (!). Reason? I hope it's not because, if she does, "his inheritence" will be paying the 24/7 caregivers I plan to hire to care for her there.
She does seem to be making progress with the therapy there, and it's not a terrible place (everyone in her wing is recently released from the hospital and just getting stronger before going home; it's a small town, so most of the other families are known to me) -- she's not going to be "warehoused" there -- but she's scared (is blind as well as confused) and uncomfortable and is of course not getting the one-on-one, round-the-clock care she's used to getting and WOULD get with a private caregiver at home. I also miss her very much!
My head says to let her stay and get all the therapy she can until Medicare says she's released (very few stay the whole 100 days); she's at least getting medical supervision while there, if not immediate attention to her wants and need. Also, it's kind of nice having others change her, bathe her, and do the early/late feedings for awhile. Head says "save that money."
Heart says she's unhappy and wants to come home, so she should come home... She's one of the FEW who can, and her time may not be long... She continues to be very agitated, and I feel sure that would lessen at home.
I should also note that NEITHER brother nor I have legal POA at this point; she would never appoint one over the other (didn't want to "play favorites"), so her current -- which has a "springing durability" clause (she must be declared officially incompetent before it goes into effect, which it hasn't yet) names us "co-agents" who must "unanimously consent" to take any action.
How vigorously brother would oppose my taking her home, I'm not sure, but I would really hate for it to be a fiasco with unreliable caregivers or a relapse...
I say your head. She's going to be somewhat disoriented when you bring her home anyway. I'd give her a little more time to get well and stronger in that setting where you know she's getting the care she needs.
I'm with Titchou--I'd say go with your head. Give her a little more time to regain her strength, while you get some much-needed rest and regain yours.
Her agitation will probably lessen as the sores heal and the UTI clears up, plus you get the added benefits of therapy and less conflict with your brother.
Perhaps it is because we all know that it is lots of work at home. In a private home, we don't have the support of nurses and hospitals. You have to do it yourself. Home care 24/7 is either exhausting or expensive if you hire someone. So naturally we think that the NH is better for now esp. she just got her PEG and etc.
...........She does seem to be making progress with the therapy there, and it's not a terrible place (everyone in her wing is recently released from the hospital and just getting stronger before going home; it's a small town, so most of the other families are known to me) -- she's not going to be "warehoused" there -- but she's scared (is blind as well as confused) and uncomfortable and is of course not getting the one-on-one, round-the-clock care she's used to getting and WOULD get with a private caregiver at home. I also miss her very much!.....
Because she seems to be making progress with the therapy there and it's not a terrible place. That is the head talking. I also miss her very much is the heart talking. She is not getting the one on one round the clock care she's used to getting (with you) is your heart talking and saying I can do a better job. But in fact she is making progress with the therapy. Yes life is uncertain. You may not be here tomorrow. But at the moment she is getting professional care that is improving her condition and is paid for by Medicare. You are getting a respite that I am sure you need as well. So why not let the therapy (which is going well) continue? Because your heart is saying I miss her and want her home. As humans we have a difficult time dealing with facts when it comes to those we love. We tend to deal with emotions first. In this case I think your head is locked onto the facts and you need to follow that.
You were the one that laid out the two sides and that is why I only gave an opinion on which side to take. I could tell you want to follow your heart but your head is telling you differently. The facts you laid out are pretty clear and what pushed me as an outside observer to recommend following your head.
Probably what you meant when you swore that was she would not go to SNF unnecessarilynornjust for convenience. But the situation is different now.
I would go with my head on this for sure
QUOTE=all4mom;4976798]Okay, here's the situation: 93-year-old beloved mother, who lives with me, developed pneumonia and ended up in the hospital with one complication after another (worsening of CHF and kidney disease as a result, diarrhea from the antibiotics, a UTI from the diarrhea, then "hospital psychosis" and delirium on top of it all, as she has underlying brain damage/vascular dementia). Then she stops eating/drinking -- although expressing that she wanted to live -- and gets a PEG tube placed. At that point, her time is up and Medicare is ready to discharge her. At this point, she still had out-of-control diarrhea, was essentially bedridden, still delirious, with open sores from the month-long diarrhea, and fresh from surgery from the PEG tube.
Although I SWORE my mother would never go to a SNF, I was too terrified to take her home and brother -- only sibling, who "helped" (somewhat) care for her at home -- was totally for placement, as we were both totally exhausted. Hence, I agreed to a nearby rehab/subacute facility to try to regain function.
At the end of a week, she's now able to help transfer and turn over, can stand and take a few steps, I've learned to do the PEG tube (brother refuses), and she's even begun asking for solid food and eating again...
The choice is: pull her out now since life is uncertain -- esp. at her age and in her condition and we're so very lucky to still have her with us after all this -- or take advantage of the "free" Medicare days? Brother is totally against her coming home, although HE lives elsewhere (!). Reason? I hope it's not because, if she does, "his inheritence" will be paying the 24/7 caregivers I plan to hire to care for her there.
She does seem to be making progress with the therapy there, and it's not a terrible place (everyone in her wing is recently released from the hospital and just getting stronger before going home; it's a small town, so most of the other families are known to me) -- she's not going to be "warehoused" there -- but she's scared (is blind as well as confused) and uncomfortable and is of course not getting the one-on-one, round-the-clock care she's used to getting and WOULD get with a private caregiver at home. I also miss her very much!
My head says to let her stay and get all the therapy she can until Medicare says she's released (very few stay the whole 100 days); she's at least getting medical supervision while there, if not immediate attention to her wants and need. Also, it's kind of nice having others change her, bathe her, and do the early/late feedings for awhile. Head says "save that money."
Heart says she's unhappy and wants to come home, so she should come home... She's one of the FEW who can, and her time may not be long... She continues to be very agitated, and I feel sure that would lessen at home.
I should also note that NEITHER brother nor I have legal POA at this point; she would never appoint one over the other (didn't want to "play favorites"), so her current -- which has a "springing durability" clause (she must be declared officially incompetent before it goes into effect, which it hasn't yet) names us "co-agents" who must "unanimously consent" to take any action.
How vigorously brother would oppose my taking her home, I'm not sure, but I would really hate for it to be a fiasco with unreliable caregivers or a relapse...
I usually look at it as to whether it's best for them (head) or best for me (heart). Doesn't always fall out that way but 9 times out of 10 it does. Being where she is has obviously done her a lot of good. Don't risk future advancement because you feel guilty. It is hard work being in rehab - for anyone. More so for her. But it's paying dividends.
Do both!!! Take advantage of the care she is getting now, the stronger she is the better it will be when you are ready to bring her home. a win win .... get some much needed rest while mom is getting much needed help....
Agree with you all; head wins! But no sooner do I resign myself to leaving her there for the duration of her rehab than I'm told she may be sent home soon for her "inconsistent" performance therein. Apparently her mood/behavior interferes some days, although she is making GREAT progress: from completely bedridden to helping dress herself, standing, walking on a walker a few feet at a time, and even using the toilet. We're working on her meds (I believe her dementia is actually a form of frontotemporal, which makes it a little trickier than your usual AD), as now I'm a total convert and want her to remain there as long as she continues to improve. Well, "remain" within reason, of course... ; /
That's usually the way all Once you decide to stay the course somebody changes the course for you. Your Mom has dementia. There are going to be behavioral, concentration, memory, and learning problems. Tis the nature of her disease. Yes, it does interfere with the normal progress of a cognitively aware individual. Every time I hear that dementia symptoms interfere with rehab I want to say DUH!!... you think? Yet Mom is making progress and they should focus on that. Hopefully they will figure it out and Mom will get more assistance and improvement before she is sent home. Hang in there... nothing is carved in stone until it's over!
I even said, "I don't think she should be penalized or discriminated against because she has a brain disease." They said, "Oh, we're not discriminating! It's just that her performance is inconsistent." Well, d'oh! People with vascular dementia (which is what I think it is, affecting the frontal/temporal regions, resulting in mood/behavior issues) have good days and bad days. Believe it or not, there are many nursing homes that won't even accept (or keep) people with certain behaviors; those are the "really nice" ones that are for, I guess, people who don't really need to be in a nursing home? Today she was trying to get out of bed, so they got her up (after I've asked them repeatedly to wait till I get there); then she stood up from the chair -- I'd say she's making progress in PT -- so they gave her the PRN dose of Ativan and put her back to bed. Guess this will be another one of "those" days and she'll be home soon! Just hope I can find in-home caregivers willing to care for someone other than someone who doesn't really need care...
I feel your pain All!!!! It amazes me. Even facilities that claim to specialize in dementia care don't understand dementia behavior. I am fighting the same problems here as well. Rehab facilities tend to be some of the worst. I have had long discussions with our rehab specialist at Mom's facility about this problem. They demand cooperation and an ability to learn and retain instructions, so why take on dementia patients who are not going to cooperate, learn, or retain? DUH They don't discriminate when it comes to admissions... but they don't know how to deal with them once they get them there. Sure her performance is inconsistent... she has dementia and brain injury. You have to shake your head in amazement at their inconsistencies!
There are some facilities that do not accept behavioral problems even if it is dementia related. I have a good friend that is dealing with that right now. His Mom is mid stage, functional but confused. She went into another resident's room, took off her clothes, and went to bed. SHOCK!! There are 3 white doors on that hall and she had no idea which was hers so she went in one and went to bed. What's so hard to understand about that since she does have dementia? They consider it a behavioral issue and I consider it normal dementia behavior. Yep, my friend is moving his Mom.
He was also dealing with the Ativan/Xanax problem. Mom got upset at supper so they gave her an Ativan and did nothing to alleviate the situation that caused her to be upset. Repeat at the next meal. That is one of the reasons I hate those two medications. It's a quick sedating solution when in fact you need to address the problem. I have for a long time refused to let Mom or Dad have even a PRN for either of these medications. The last time they tried to give Mom a PRN Ativan... it was because they had failed to give her the morning anti psychotic meds. She had a fall and by the time that was resolved she was past her windows for the meds to be given. Instead of giving her meds late they wanted to sedate! ARG!!
As I have said several times here I have been extremely lucky in finding the right places for Mom. The diagnosis came from a research service that I stumbled upon and only took a week since she has a current CT scan. The psych unit was a perfect once I learned of it's existence. The locked unit I have her in was wonderful until and administration change. The past coordinator had an extensive personal knowledge of this disease having cared for her father until his death. The new coordinator is clueless and I am dealing with many of the issues you are having.
We need so much more awareness, even in the medical community and long term care industry, as to what dementia truly is!
In the course of all this, we DID actually send Mom to a "geri-psych" for a couple of nights (that would be one of the five hospitals)... Let's just say it was NOT a good experience, and they certainly didn't help her. You're fortunate indeed if you've had good facilities with a kind and competent staff for your mother; we have not been so lucky with ours... Most "nice" nursing homes will either reject outright a loud and disruptive patient or send them to geri-psych (the family, of course, can opt to take them home instead, but they aren't allowed to stay and be "disruptive"). The ones that do accept them, and thank heaven there are such places I suppose, are not so nice. Even I must admit that it's very disturbing to hear someone yelling HELP or GET AWAY FROM THAT WINDOW all night long; I think one patient upsets another patient and so on down the line! Most rehab patients, however, are there for broken hips or recovery from pneumonia (the hospitals kick them out so fast since Medicare reform) and so are more "normal" than my mother at present. However, sedating my mother so that she's UNABLE to perform in PT seems to me a not-so-subtle form of sabotage. We'll see...
Yes I know I have been very lucky with the medical and psychological help I have found for Mom. The MARS center where Mom was diagnosed was amazing but it was a research group working on techniques for early diagnosis. It was a one stop shop with a psychiatrist, neurologist, geriatric specialist, cognition specialist, and dementia specialist all involved at once. The Geriatric Behavioral Med Unit was top notch and amazing. They turned my manic hysterical Mom into contentment in 10 days. At the time when Mom and Dad were both a hand full I did find a dementia locked unit with a coordinator that was willing to work with me. Yes Mom and Dad disrupted the status quo for a while but she was amazing at finding ways to make it work. She was the one that knew of the wonderful unit Mom went to but she was also able to deal with Dad with no hospitalization. I watched her perform her magic with others as well. She set the standard. We do have one lady that has delusions and talks to the walls daily. Some days she will let out a string of profanity that is incredible. We have one that refuses to shower and let's it be known. Another yells every time you try to get her in or out of bed. But that is dementia behavior and has to be expected in a dementia unit Sedated residents sitting in a row is unacceptable in my book and I walked out of many of those facilities looking for one with activity and noise!!
Yep, I get your frustration about them sedating for PT. As I said, rehab is not good at dealing with dementia. Just validates the need for more understanding of this disease by so very many!!
Forever in my heart 
Once you decide to stay the course somebody changes the course for you. Your Mom has dementia. There are going to be behavioral, concentration, memory, and learning problems. Tis the nature of her disease. Yes, it does interfere with the normal progress of a cognitively aware individual. Every time I hear that dementia symptoms interfere with rehab I want to say DUH!!... you think? Yet Mom is making progress and they should focus on that. Hopefully they will figure it out and Mom will get more assistance and improvement before she is sent home. Hang in there... nothing is carved in stone until it's over!
Most "nice" nursing homes will either reject outright a loud and disruptive patient or send them to geri-psych (the family, of course, can opt to take them home instead, but they aren't allowed to stay and be "disruptive"). The ones that do accept them, and thank heaven there are such places I suppose, are not so nice. Even I must admit that it's very disturbing to hear someone yelling HELP or GET AWAY FROM THAT WINDOW all night long; I think one patient upsets another patient and so on down the line! Most rehab patients, however, are there for broken hips or recovery from pneumonia (the hospitals kick them out so fast since Medicare reform) and so are more "normal" than my mother at present. However, sedating my mother so that she's UNABLE to perform in PT seems to me a not-so-subtle form of sabotage. We'll see...
