Can anyone help shed some light on this one?

[Clematis]

I still miss my dad, who died almost three years ago. I also miss my friend Hermon, who disappeared from my life a few weeks ago, courtesy of his son. Hermon has dementia and I spent the last year doing everything I could to help him stay in his home as long as possible. Hermon's son Steve got a woman to trick Hermon to get in a car to go have lunch, which was actually on the way to Steve's house three hours away. Steve tried to keep Hermon in his house on a small ranch with an 8-foot chain link fence around it. Steve and his wife were in no way prepared to keep a very healthy and strong man who wanted to go home. After about a week Hermon got over the fence, was captured, taken to the ER, transferred to a psych hospital several hours away, and then placed in an assisted living facility that does NOT have a locked unit and does NOT have a memory unit, which Hermon probably needs, sad as that is, according to a previous assessment.

I talked to Hermon on the phone after he had been there for about a week, with his son's blessing, but now Steve does not want me - or anyone - to talk to Hermon, because he thinks that Hermon will soon forget he had a life before, friends, a cat, a home, and all that. He figures if Hermon is out of contact with everyone, he will just settle in and forget everything else. When he was still in the comfort and oriented to his surroundings, he would go into a rage about or at Steve about every day, saying that giving him POA was the worst mistake he had ever made in his life, and raging about how Steve was stealing from him and so on. I figure that is still probably going on, even though he has almost no contact with his son, and the staff is probably reluctant to be open about this, because their occupancy is at about 75%. It seems that Hermon will figure out that the reason he is suddenly living in Steve's town is somehow due to Steve. I also figure Hermon will keep trying to get home. He has no idea Steve is going through Hermon's stuff getting ready to have a big garage sale and then sell Hermon's house. Hermon will need the money to pay for his care at this point, but it seems cruel to have not told him anything about what is going on or where he is or why. Hermon reportedly thinks he is staying at a hotel or maybe someone's home while his caregiver recovers from a hysterectomy, after which she will continue caring for Hermon in his own home.

Is this a normal strategy? Lying to someone about why they are no longer living in their home and keeping them in a situation of no contact with anyone from their past? Is this something that facilities do on any frequent basis with elderly confused patients? Does is ever work or do the people just disintegrate and become more confused? Is this ever a good strategy to capture a person with dementia and shut them up with no contact with the outside world? It seems really cruel, but I don't know what that is likely to do to a person who suffers from dementia. Perhaps someone else knows. I find it to be very disturbing, and maybe it is...

The other thing that bothers me is that Hermon really has no contact with anyone outside this facility, and so no one really knows what it going on there. Steve told me that he has only talked to his dad twice in the three weeks he has been there, but calls the staff and asks them how Hermon is doing. The staff give him glowing reports about how Hermon is doing well, is happy, busy playing dominoes, and so on. I remarked that there is a financial motive for the staff to give Steve good reports and people in all kinds of facilities do better when family and friends are "looking over the shoulders" of the caregivers by way of frequent visits and contact. I don't think Steve believed me...

Any comments from anyone who has had experience with elderly relatives with dementia living in facilities where they don't want to be?

[kayc]

Laura, this sounds heartbreaking.  I find it especially cruel that his son is trying to isolate him from people that care about him.  My mom was further along than Hermon, it took us a year to take her to court to get a court-ordered medical evaluation, because my mom stopped going to the doctor and stopped taking her medicine.  Turned out she was in Stage 3 dementia and had Leukemia, something none of us were previously aware of.  They said she needed 24/7 lockdown and assisted living facilities would not take her.  I'm surprised they'd take Hermon.  Is it too late for Hermon to change his POA to someone else under the circumstances?  It took us months to find a dementia care facility with an opening, by this time there was a caseworker assigned to my mom and she tried to help my mom understand what was going on, but it was difficult.  My mom thought she was going to jail, no idea where/why she got that idea.  Once she got an idea in her head, it was pretty hard to remove it.  When we finally found an opening, my brother picked her up, along with some clothes, and took her there.  We visited her regularly and invited people from her church to, but I don't think they ever did.  For the first two weeks she slept, I'm sure she was in shock with all of the changes.  I told them not to let her stay in bed all day, to get her up, dressed, and in the main part of the living facility.  From there she blossomed and seemed happy.  Amazingly, the house she'd lived in for 59 years...she didn't ask about it.  She'd go all over the place talking to people and seemed quite happy and I was able to take her out to dinner.  Her place had to be sold for her care.  My brother got everything, but she left everything she had to him in her will, nothing to us five girls.  When she fell and got black and blue all over, they took her walker away and she was stuck in a wheelchair, she didn't seem as happy after that.  But she always relished visits.  By this time she was stage 4 and they required two people be present for any moving of her.  I could no longer take her out to dinner.

Dementia is a whole different malady...she remembered things from way back, but not five minutes ago or yesterday.  I don't think forcing someone to forget things is good, dementia itself will do it's number on them, sadly.  How would that son like someone to treat him in like manner someday?  He should be careful how he treats his dad  less karma come haunting him!  It could happen.

I'm sorry for your friend, Hermon.  I'm not sure there is anything you could do to intervene, that'd be a question for a lawyer.  The way my mom was handled was done legally and with medical advice, I'd advise the same for others going through this.  It's a hard territory to navigate.

[MartyT]

1 hour ago, kayc said:

I'm sorry for your friend, Hermon.  I'm not sure there is anything you could do to intervene, that'd be a question for a lawyer. 

I agree, Laura. Since you have no official "standing" as a member of Hermon's family, and since you're not a part of his health care team, your hands are tied ~ the only power you have in this situation is the power of persuasion ~ and if you have no direct access to your friend Hermon, I don't see how you can change any of his circumstances. And I can only imagine how difficult that must be for you. I'm so sorry . . .

[Clematis]

12 hours ago, kayc said:

Laura, this sounds heartbreaking.  I find it especially cruel that his son is trying to isolate him from people that care about him.

 

11 hours ago, MartyT said:

And I can only imagine how difficult that must be for you. I'm so sorry . . .

Thanks to you both. It has been very difficult. I really don't understand this strategy of cutting him off from everyone, really including his son, until he "settles in". I somehow find it hard to believe this is how this sort of transition is typically handled, but I don't know. I wish I did...

Meanwhile, the only thing I can do is to play ball the way Steve wants it played and to continue to behave in such a way that Steve sees me as an ally and confidant so that he doesn't shut me out altogether. I think it very likely that Hermon will "settle in" and then I will be able to have contact with him. I have very gently reminded Steve that if he wants me to stay away from certain topics, he really needs to tell me what they are and he can't really blame me for not having guessed somehow what Hermon knows about his situation and the degree to which he is being kept in the dark. I certainly disagree with all this, but have to go along with it if I want to keep in touch with Hermon.

[kayc]

Isolation was NOT part of the strategy used with my mom, so I'm afraid I don't understand this any better than you do, Laura.  My mom's medical team encouraged visits!  No one tried to make her "forget" anything.  We tried to be sensitive to her and what she was going through.

Hermon is lucky to have someone such as you that cares about him.  I hope you're able to visit him soon.

I've also had friends with dementia, no one employed this strategy with them either.

[Clematis]

7 hours ago, kayc said:

I've also had friends with dementia, no one employed this strategy with them either.

I think Steve is really scared. His dad has raged at him off and on throughout his life, and I think he is terrified that his dad will turn on him and rage on him that Steve is stealing his money and his phone and controlling his life and has removed him out of his house without Hermon's permission and so on. Unfortunately, there is a lot of truth in all that, and Hermon used to say over and over that the worst mistake he ever made was turning things over to Steve.  It is also true that it was or would soon be necessary to remove Hermon from his house and sell it in order for him to have the money for where he is going to live next, and he would never have been willing to agree to that. Therefore taking him out of his house without his agreeing to it does seem to be necessary. But Steve had a year of my helping Hermon to stay in his house - I had hoped that he would prepare something more sensitive than the way he has gone about it.

As to the isolation, I suspect that the staff is trying to control the situation and keep Hermon calm while he gets used to things. It's really hard to imagine that Hermon isn't angry and scared, and it seems likely that the staff is glossing things over for Steve since Steve has allowed for that by his lack of involvement. I figure he is in some amount of denial in his hope that Hermon will just kind of forget that he had a home and a life. People with dementia remember the distant past much better than they remember the recent past, and so this idea seems kind of crazy. But I have to go along with it for the time being. 

I think Steve is afraid of a lot of things. I think he is afraid of his brother looking over his shoulder, I think he is afraid of what his dad's future will mean for him and his family and his future finances. Steve has been living for the past 15 years on a piece of property rent-free that is valued at about $500K and he hopes to inherit it and not have it go to his brother or his father's care. Hermon meant to give it to Steve, but if he uses his POA to segue in into his ownership he may be in a lot of trouble. I think Steve also has some apprehension about me, although I have worked hard to help Hermon for the past year and that ultimately is of benefit to Steve as well. I think ultimately he is suspicious of others because he is worthy of suspicion. My intention all along has been to help Hermon, but it isn't easy, and I think his sons see him as the goose with the golden eggs. So did his (now deceased and former alcoholic) daughter, who was seen on numerous occasions selling his stuff when he was at church. What a mess!

As for me, I am working on plans to have someone outside my family have my POA and all that. I have a good friend who is a sweet and kind person...very smart and also happens to be an MD. She would be a much better choice than either of my sisters. My dad's attorney would be good for a backup to Susan. 

[kayc]

To Steve's credit, if Hermon is unable to live in his home alone, it is very costly placing him in a care facility and they would require him selling him home and going through that $ before Medicaid would help.  The facility my mom was in took most of the value of her house.  Sad. I hope I die before I get dementia, I want to be able to leave something for my kids...my son doesn't need it but my daughter sure could use some help for her old age.  Also, I don't want either of my kids burdened like that.  

I'm glad you have Susan to consider for yourself.  

Poor Herman (alcoholic daughter stealing), I'm glad I don't have that, that would be heartbreaking for sure!

[Clematis]

1 hour ago, kayc said:

To Steve's credit, if Hermon is unable to live in his home alone, it is very costly placing him in a care facility and they would require him selling him home and going through that $ before Medicaid would help. 

Yeah, Steve is on the right path, but somewhat misguided in the way he is going about it. He tried to get his dad to stay at his house, the "ranch" with an 8-foot chain link fence around it, and that would have been a good idea in saving money, but his approach was to lie to Hermon (and me) in saying it was only temporary while his former caregiver was recovering from surgery. Hermon figured this out and escaped after a week, with part of the result being that he trusts Steve less than before. Hermon lacks the cognitive capacity to accept the reality that he really cannot go back to living in his home, but I think out of respect for his humanity it is worth trying to give him a chance.

A year ago Steve was adamant that Hermon not be told that his daughter Billie had died, and wanted everyone to tell Hermon that she was out of town visiting relatives. This was not a credible lie, even to a guy with dementia, because everything had been removed from her room, especially the bed - due to bedbugs. Also, BIllie's son wanted some of her things. Hermon kept going down the hall and calling me in tears, saying "I think Billie's gone". I would say "yes, that's right - she's gone". He would ask me what happened and as I began telling him about the alcohol and her liver, it would come back to him and he would cry a little and then move on. It seemed to me like a rather normal processing of grief. We all forget our loss in the beginning and then it comes back and slaps us back into reality. Hermon wasn't much different.

Steve also wanted to not tell Hermon that he wasn't able to drive any more and so Steve took the car he wanted and disabled the other. He thought Hermon would get angry and thought lying was a way to avoid that. Nevertheless, Hermon would go out in the garage and notice that one car was gone and the other would not start. He would go into a rage and call either Steve or me, yelling about how Steve had stolen his car and disabled the other and he was going to kill him. When Steve got these calls he would panic and ask me to go and check on his dad. When I received these cars I would tell Hermon as sweetly as possible that he was not supposed to be driving and in fact his driver's license was expired. I would tell him as kindly as I could that there was really no one, including me, who thought he should be driving, and offer to pick him up and drive him wherever he wanted to go. After some time, Hermon became familiar with these little talks about his not driving and he was not nearly so upset.

I know that taking one's parent's keys away or somehow convincing them to stop driving is really difficult, and I think Steve was rather gutless in avoiding this and by his avoidance delegating it to me. Now he is faced with the even more difficult task of transitioning his dad into a care setting, and he's not handling that very well as far as I can tell. I'm not sure that lying to Hermon is working, and treating me like the enemy is probably a mistake because I could probably help him. I think he is suspicious of me because he is doing something suspicious. I think part of his agenda is figuring out how to get the "ranch" into his own possession so that it does not end up being sold to pay for Hermon's care. I figure he is playing his cards close to his chest because he is trying to pull off this transfer without his brother or anyone who might be assessing Hermon's financial situation discovering the truth.

Meanwhile Hermon is being told he is just staying someplace temporarily while his caregiver recovers. If he really could believe that, it might be ok because he would gradually settle in. But when I talked to him ten days ago, he was asking me, "Is this a nursing home?" I think he is figuring out the truth and is understandably upset about it. My biggest fear is that he will put this together and escape in his attempt to go home, and since he is not in a secured facility he might die of exposure trying to get home. It's getting cold. I hope I'm wrong.

[kayc]

He probably needs to be in a secured facility for that reason and many more.

My FIL was lucid in his mind up to the end but needed some care, so he was placed in assisted living, he always wanted to go home, but he made the best of it.  It's different when they have dementia, they don't understand what's going on and are very afraid of losing control, although they know deep down inside that they are regardless.  That's why my mom quit going to the doctor, she was afraid he'd figure out what she knew inside, something was going on with her brain.

[Clematis]

On 11/14/2018 at 7:16 AM, kayc said:

He probably needs to be in a secured facility for that reason and many more.

He does. I just want to have contact with Hermon and to help his other friends have contact with him because I believe it would be good for him. It's good for anyone to feel love and connection. Also, of course, I miss him. I talked to his son Steve on Monday and he told me that he talked to his dad and Hermon asked Steve "Do I live here now?" Steve told him yes, he does. "Why?" And Steve told him, "Well, Dad, you walked away from your house and a lady picked you up and they took you to a hospital and you had to come here because your memory is too bad to live alone anymore." He said he went on to assure his dad that he is living with people who love him and are taking good care of him. 

I'm not sure if it's a good idea to make up such an enormous lie (telling  a guy who clung desperately to his home that he had walked away from it). It seems like gaslighting, and with a person who is already tremendously confused that seems mean. But there is nothing I can do about that, and I told Steve I was glad he told me that because I can do my best to avoid it by telling Hermon when I talk to him that I really don't know how he came to live there and not his home. The only hope I have of continuing to be Hermon's friend is to play it Steve's way. And after telling different lies to me and Hermon backfired when I talked to him, I think Steve now has the picture that he needs to tell me the "party line" if he expects me to stick to it. 

I have a friend who is having a similar situation to the one you had with your mom. She is living with her dad, who had dementia but won't go to the doctor or entertain any discussion about his memory or inability to do everything he has always done. She seems particularly distressed by his freely spending money he doesn't have, and is worried that they will lose their house and everything else.

[kayc]

My mom should have put my brother or myself on her account years before and let us help her, but she wasn't cooperative, she fought us tooth and nail. She was so confused, she let her insurance expire!  Can't count the times us kids got a call from the fire department or police, my mom would let her oil run out and get cold and then call 911.  We'd pay $450 for her oil and she'd crank it up to 90 in her two story house and it'd be gone in three weeks.  She refused to move into an apt. when we tried years ago, something more manageable.  My brother would cut her wood but finally was afraid she'd do herself in building fires.  There comes a time they need help, they're a danger to themselves.