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My FIL has been at a memory care facility for about 6 months. The first 4 or so were dealing with his meds for his bipolar, but he was also given a test by his Dr and diagnosed with dementia. Supposedly this diagnosis indicated that he would not be able to live on his own without 24 hour support.


At this point, his meds seem to have been adjusted so that he is much better. He seems pretty coherent most of the time, although he has never been very good at planning ahead... e.g., he has never managed his own money or really his medical issues.


He has been pretty accepting, up until now, that COVID is the reason he is at the facility. But recently they opened up a bit (this is NC) and his wife was allowed to see him. Of course, now he wants to know why he cannot go home.


So here is the question. All along, the doctors *and* the facility management have been very reluctant to give him any type of honest assessment of his condition and why he is in this facility. He constantly calls his eldest daughter (my wife) and demands for her to “do something”.


At this point, she feels that they (the family, mostly 3 other sisters), should tell him: Dad, this is your diagnosis.. you cannot be allowed to come home because there is no one there to care for you as you need (his wife cannot, with dementia issues of her own - possibly she caused the original meds issue).


Has anyone had this type of “realistic diagnosis” been withheld from their family member? We believe that FIL will understand the truth, although he may dispute it. It seems like the facility just doesn’t want to take the chance that he may become disruptive, which I must confess could be a possibility.


It is a very tough situation for my wife, and while the other sisters do help (they live nearby, we do not), they have *not* followed through on some of these questions for his doctors about his current diagnosis and telling him the truth.


Thanks in advance for any comments.


Bood

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If he can understand what is going on I would tell him.
And part of telling him is that he has to stay where he is because it would be unsafe for him to go home.
As the dementia progresses he will still ask to "go home" and at that point tell him. "you are home, this is your home" "this is where you are safe" This is what you can tell him now.
If he does not comprehend a subject for long then it to tell him is useless as he would forget what you told him rapidly.
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Reply to Grandma1954
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Your question points up the confusing nature of a dementia diagnosis. I'd call it a conundrum, a dilemma, an enigma.

IOf course it is fair and ethical that any patient should be informed about of the nature of their own medical situation, but in the face of dementia this is problematic. You are providing this information to someone who can no longer properly process information because the diagnosis involves deterioration of the brain.

The mechanics of understanding one's own situation are severely compromised in the face of a diagnosis of dementia. How can you process information about your brain when your brain no longer properly processes information?

Consider a medically healthy adult who has anxiety and depression, and who can attend therapy and take medication. They can take responsibility for their health.

Someone with dementia has lost the ability to care for themselves in that way; that is perhaps why it is called Memory CARE, and also why we have POA and other legal documents in place. We are now in the position to take care of our loved ones and do the right thing for them. Part of that is deciding what information will make their lives better, what information is necessary and/or what may be potentially harmful. If you and your family feel that the AL facility is taking good care of your FIL, it's now up to you to decide how to explain or not explain his living situation to him.

There's no right or wrong answer. At this point it's whatever works best to make him feel calm and comfortable.
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Reply to Rabanette
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Is thefres somewhere, to AGE IN PLACE WITH SPOUSE? AS your health mental or else, goes down, the facility can provide more care with more rent.
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Reply to MAYDAY
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If he's capable of understanding a dementia diagnosis, then I'm all for NOT telling him. That's one of the most terrifying things for someone to hear.

My mother has never known her diagnosis, and it would serve absolutely no purpose. Fortunately, she hasn't ever given me any pushback about moving to a nursing home because once my dad passed away she did understand that there was no one at home to take care of her anymore. In hindsight, I regret the abruptness of her move just two weeks after Dad died, but there really was nothing else to do.

The staff at the nursing home should be able to work with your FIL to help him acclimate to the idea that he is now home. Ask for their help.
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Reply to MJ1929
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Imho, he could be told that no one is at home to care for him and he needs the type of loving care that he deserves - that may seem trite, but softer than saying 'Father in Law - you're ill with dementia.' Prayers sent.
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Reply to Llamalover47
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"All along, the doctors *and* the facility management have been very reluctant to give him any type of honest assessment of his condition and why he is in this facility."

Really? Have they said why?

It would be most unusual for a doctor not to disclose his findings to his patient. It would take quite some justification. And if FIL has been living with bipolar for many years, he will be very used to discussing mental health issues with professionals and they with him.

However, it would be much less unusual for a patient with dementia to be highly selective, to put it euphemistically, about what his doctor and others have told him.

Are you sure the doctor and the facility are withholding information? What discussions have they had, then, and who with?
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Reply to Countrymouse
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Home...is the most secure place in his life. He doesnt believe he must live in the "substitute" place. His diagnosis prevents him to live at home as it will create real problems for both. Be sure the wife is supporting the necesity of staying where he is. You can insist the Dr. gives him the diagnosis and reasons why he must stay where he is. Be sure all family members agree he should stay where he is. Be sure he is on meds for bi polar as this is a necisity for the facility. Sounds like he needs a little help with anxiety...Dr. does this. so when his bi polar needs "settling down".
The bi-polar symptoms must be under control or the facility will not keep him. When a bi-polar person is in a elevated mood, he is a "driven"person with "predictable" behavior.
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Reply to DKelso34
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I dont know. I'm all for the truth. But please dont ever tell me that I will NEVER go home again, even if that is true. I could take the news that I'm dying more easily than that! Don't hold out false hope, but don't extinguish even the faint, though unrealistic, hope that I may have of a better life someday.
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Reply to Dosmo13
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Rabanette Sep 24, 2020
I accept my mom's situation as 'living in the moment'. She knows me. She has good days and bad days. She would never have wanted this, to live in Memory Care, but this is the place that is able to take care of her 24-7, because I cannot.
There were definitely some rough moments when she was more cognizant, about two years ago, and I think she was pretty disgusted with me that she was going to live in a (very nice) facility.
I realize that her reality and what her brain can process are extremely different from my reality and my brain. I meet her where she is and that has seemed to work pretty well. I still get choked up about it, don't get me wrong, it's not easy, and the Covid quarantine has been a bear.
I really just want to sit with my 95 year old mother and hold her hand; but I don't know if they'll let me do that anytime soon. Seems like outdoor visits are coming soon, so there's that.
Thanks for listening as I vented a bit!
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This question is the reason I’m seeking my doctor’s advice today. Is it more humane to go along with a dementia patients reality and say “ dad you’ll come home soon” or bluntly say no you’re never coming home. This is where you’re going to be forever. I’m assuming as my Fil that he’s safe,well fed, has companionship of sorts, maybe entertainment, correct meds on time, etc. COVID makes it doubly hard because we can’t just go there and chat. These constant calls of please take me home can create devastating negative affects on loved ones... I know. I don’t know the answer and that’s why I’m seeking professional advice . If you find a solution, please post it.
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Reply to psuskind1
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What would be gained by telling him he has dementia? Will it change his behavior? Will he say, "Oh, OK, I get it!" and accept being there? What is your goal? More than likely he'll deny he has problems and could become argumentative. The next day he'll want to know why he's there again.

Didn't his dr. tell him he has dementia? Didn't he discuss it with the family. That's with whom the discussion should occur. For your part, it will take some creative fibbing and distraction. The below "careblazer" YouTube video might help.

https://www.youtube.com/watch?v=VBujKHME814&list=RDQM9KfH9lk9K-A&index=20
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Reply to sjplegacy
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Let him know that he has several medical diagnoses that require 24/7 help and that family are unable to provide this type of help. His wife may need to be assessed and placed in the same facility with him. They could share a room.
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Reply to Taarna
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Since his wife is showing cognitive decline as well but neither of them sound “incapable” Is there any possibility of moving them into an AL apartment or situation? I think the levels and set ups available can vary depending on their area but I’m thinking about a facility where they have their own place but staff oversees their medication and meals are available as well as assistance with things like grocery shopping and getting to doctors appointments. This way the need to be somewhere with help is t all focused on him, it’s the best thing for both of them safety and health wise, they “move” together and when one of them needs more care they can stay in the same campus together. It’s often easier to convince a spouse to do what’s best for their partner than it is to do it for themselves.

I also would suggest a family meeting with the facility staff, even if it has to be remote now, that includes all the siblings so these important questions can be asked of the professionals and everyone is at least hearing the same answers at the same time. This doesn’t mean everyone will interpret what they hear the same way but at least the questions are being answered and a discussion can ensue. I would want to know why the staff is dodging his diagnosis as well, I suspect it has something to do with his medications being straightened out and maybe the dementia diagnosis was used to facilitate that or something so he wasn’t really put through testing the doctors want to stand by. Is he actually in Memory Care or is he in a NH or in a temporary placement for psyc (medications) eval? Are they expecting him to stay or looking for him to be placed elsewhere? COVID may have complicated his situation and their information so you understand it too. Who is the contact person dialoging with the doctors and facility, is it your wife or is she getting her info through a sister? This stuff can be hard for us laymen to follow and understand in the best of times so explaining it...
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Reply to Lymie61
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My mom didn't accept her Alzheimer's diagnosis. She survived cancer 4 times, and that diagnosis didn't "throw her." She wasn't happy about it, but she dealt with it, and was proud of surviving it, (me, too), but when she was living with us, she saw a box of one of her Alzheimer's med patches, and asked who had Alzheimer's. I told her that she did, but that medicine was going to help her, (I hoped), but she refused that diagnosis, so I let it go. A friend's dad was in Memory Care, and his wife had passed away years before, but the staff told him she was out shopping, at that appeased him. Every situation is different, I guess. I even wrote a book about my husband and I taking care of my mom called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale."
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Reply to rlynn123
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I think there are hard truths and soft ones. The hard truth would be "You have dementia and can't go home because you're not safe there." The soft truth is "It's not safe for you to go home right now because...(add whatever - COVID concerns, mobility issues, etc.)" or "The doctors haven't told us that you're ready to go home yet." Which is better? Every situation is different but I go with the soft truth. I can't outright lie to Mom but I also know she isn't going to remember what I told her so I say the most humane thing I can but still be truthful. There was no way I would tell her she has dementia, can't remember to take her meds or even how to use the microwave. I feel that is just mean and would only hurt her everytime she heard it. Mom may not remember the words I say but she will remember how she felt when she heard them. So I switch it up if she says she wants to go home. I'll either tell her that it's not safe because of COVID, she needs to be able to climb 16 stairs to get into the house, or the doctors haven't told us that she's ready yet. Those are all true enough and typically will satisfy her.
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Reply to AvaC42
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When my father told me he felt like he was going crazy ( he had Alzheimer’s but didn’t remember that) I simply told him that he had a brain disease. It was easy to understand and satisfied him so that he felt better about it.
Your father has two different problems. If he doesn’t stay on his meds for his bipolar I can see it causing your mom big problems with the happy/angry swings. Add dementia to that hooboy, I wouldn’t want him home with my mom.
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Reply to glendj
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I think if he's on meds and that seems to be going well and he's able to remember to take them that he should be able to go back to his home with his wife.

He would be happier and probably safer especially during this covid.

They could get a Caregiver to come over a couple hours a day to help out.

I would rather live a happier shorter life than be made to stay where I don't want to be.

He will just be sad, lonely and feel unloved.

If he's able to use the microwave, eat, go to the bathroom by himself and can use the telephone you should let him go home.
You can set up a camera to keep an eye on him.
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Reply to bevthegreat
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My LO “knew” before she entered residential care, but I never discussed specific diagnostic details with her.

My perspective is that anything that is told to an LO with diagnosed dementia should be based on the VALUE TO THE LO of what is said.

”Honest” to the responsible caregiver does not necessarily mean “honest” to the LO. If your LO is anxious and restless now, in residential care, it is likely that he’d be anxious in his home setting as well. His “honest” was previously distorted to a degree because of his bipolar issues, and will be additionally distorted because of the dementia.

If the meds for his bipolar symptoms were prescribed before his dementia was evaluated, they may need to be re-evaluated in light of the dementia diagnosis, and his prescriptions may need to be tweaked to reflect the combination of issues.

When my LO first entered a very good MC residence near me, a relative decided to tell her the “truth”, and stated to her that “she’d never go back to her old home”. The results of his “honesty” were devastating to her, and without the help of a very gifted psychiatrist, I doubt that she could have done as well adjusting as she ultimately did.

”Truth” can be “Your doctor says your not able to live at home Right now”, “I’ll let the doctor know that you want to go home”, this style of communication.
As you know, dementia is progressive. “Pretty coherent” can be social competence accompanied by increasing loss of whatever management capacities he had previously.

If you as a family are absolutely determined that he be told “the truth”, his doctors should definitely be involved, if not solely responsible, so as to spare his relationships with family members. Although he likely will forget the specifics of such a conversation, the recollection of positive interaction with family may last longer, and he has the right to that.

Love and respect for his peace, safety and comfort are more important sometimes than “facts”.
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Reply to AnnReid
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I believe that your FIL has a right to the truth whether or not he can remember it, whether or not he can believe it. I would always error on the side of the truth. I would tell him you will be there for him in every way you are able, but that he cannot come home. I think this news should come from family, perhaps with administrator there, not from the facility or doctor alone.
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Reply to AlvaDeer
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I am in the EXACT same position as you are, unfortunately. My mother who's almost 94 was diagnosed with progressive dementia back in 2016 while she was living in the regular Assisted Living section of her place, and had her own apartment with a microwave and fridge, etc. Then she started to go downhill, both physically and mentally, over a period of time, requiring more and more help to where 2 people were called in sometimes to help her. That is against ALF rules; a resident can only be a 1 person assist at any given time, at least in 99% of the ALFs here in Colorado. So she became a problem and they were wanting to ask her to leave, but were reluctant b/c she'd been there since 2015. Then she caught pneumonia. After a week in the hospital and 20 days in rehab, her cognition was even further diminished, plus she became wheelchair bound 24/7 due to neuropathy, another story in and of itself which I'll spare you the details of (you're welcome). The regular ALF would NOT take her back after her rehab stint, and would only accept her in their Memory Care building. I never told her she was diagnosed with dementia, just that she had 'memory problems' and needed too much physical help to qualify for regular ALF living any longer.

She's been in Memory Care for 16 months now, and is in better mental shape than many of the other residents, whom she calls 'crazy' and 'stupid morons', etc. You get the picture. She's got moderate dementia and doesn't even know what day it is, can't dress herself or go to the bathroom alone, yet 'doesn't belong there.' Every day she asks, "What am I doing here? I don't belong here." Her doctor told her on Tuesday that she has severe cognitive decline which worsened after her last hospital stay. Know what she said? Yeah well I STILL want to go back to my old apartment in the regular ALF.

I've decided to tell her MYSELF about her formal diagnosis b/c I've done her NO favor by hiding the truth. She won't accept it, of course, because she has a very very strong need to feel 'better than' others; she thrives on it, in fact. She won't take the news well, either, and will ignore it or push it under the rug, as she does everything else she doesn't want to hear. But she needs to know that there IS a VALID reason for her to be where she's at. She cannot and will not come to live with me b/c I am incapable of handling her 100 issues here, and frankly, I don't want to deal with her. Just the bathroom/incontinence issues ALONE would have me pulling my hair out.

She needs to know, and your FIL needs to know, too, in my humble opinion. Whether it 'registers' with him or not is irrelevant. A person has the right to know WHY they live where they do, and what the reasons are for it. You know? My mother will tell you there is 'absolutely nothing wrong with her' but the truth is entirely different. They take excellent care of her where she's at, and THAT is all I care about.

While not every diagnosis of dementia means that the person cannot live alone or requires 24/7 care, only YOU know what level of care your FIL needs. If you believe he NEEDS to be there, then he should also be told the truth as to WHY he's there. Probably many, many times, unfortunately. But he (and my mother as well) will likely reach the point where the questions will stop as the dementia advances. Acceptance sets in and life goes on, I guess.

Wishing you the best of luck dealing with the whole ugly mess.
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Reply to lealonnie1
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BoodaGazelle Sep 21, 2020
Thanks (to all) for sharing your story. It does sound very much like my FIL... my wife says this is the toughest thing she has ever had to deal with, and we both acknowledge our situation is not as bad as some.
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The doctor should be the one telling him.

My dad got stabilized and now lives on his own with a diagnosis of dementia. Not completely ideal, but he does well because he knows that he will end up in a facility again if he isn't careful with his meds. He is diligent about taking them now.

Not every diagnosis of dementia means that you can't live alone or require 24 care. Dementia symptoms can be caused by many medical conditions that are treatable and that means that the symptoms clear up when you get things under control.

Make sure that he really is in need and not just because a doctor made a diagnosis of symptoms.
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