To Give or Not To Give Out MCF Info

Dio

I've been approached by a couple of DH's relatives and distant friends asking for the name, location, address and phone for the MCF he's placed in. My first inclination is not to share this info. I feel that it's our private business and I want to uphold DH's privacy as much as possible. But the more I politely refuse to divulge this info, the more it seems they keep wanting to know. First, they said they want to visit DH, not that they even bother to ask for my permission as a courtesy. Then they said they want to call him to talk. Then they said they want to send him a card or a letter. They didn't visit him while DH was home, and now suddenly, they want to visit him...at the MCF?! They hardly ever called or wrote, and now they want to?? First, I asked for their patience in visiting, to wait until DH is more settled. Then I suggested that if they want to send him anything, to please mail it to our home address, not the MCF's. Then they want to call the MCF to talk to DH because DH doesn't have his cellphone and hasn't operated one in 2 years. What do they think an MCF is? My suspicion is flaring up, big time. I wouldn't be as suspicious if they weren't so persistent in trying to wrangle the info from me. Is my gut feeling wrong?

ButterflyWings

Dio - Even if their motives were totally pure (sudden interest in seeing him is curious though) they should go through you and be guided by your decisions. As his primary caregiver and spouse you need to be given the respect to coordinate any visits or at least to know who is wanting access to him and why. On the one hand, trustworthy people visiting would be great unless it is upsetting or disorienting to him (my DH would not know who they were and might be overwhelmed or just thrown off, or at best oblivious -- in which case it wouldn't be helpful anyway).

Right now, I may be the wrong one to comment on your post as I have some scandalous, unscrupulous folks doing sneaky, then overt things (in court) trying hard to pull a fast one that would undo our marriage, invalidate POAs and establish a guardianship to take over property and person. As if something new has occurred and I am doing harm to my DH so they must reform their awol ways and rush in. I had no reason to expect this, but I guess you live and learn. I think you should trust your gut feeling. Better safe than sorry.

One of the early forays that I totally missed...an old "friend" and a family member were visiting with him 2 years ago and while I was out, I found out later they were happy to know "at least he can still sign his name". What?! So, they had him sign something. Who knows what. But how inappropriate, right? Even if just curious, that's not OK.

I agree with you, they should send things to you "so you can ensure they get to him" if/as appropriate. Asking to mail something provides the address that you wouldn't give them to visit. And it sounds like phone calls are not something that even makes sense now. (I went through that also. Accusatory statements like I was preventing him from phone calls -- his dementia was doing that). Some on these boards have had serious issues with PWD LOs getting in a loop with anxious phone calling and it gets out of hand. These absentee friends/family could trigger that and it would be your problem and the MCF's to fix). Could you offer a video visit with them the next time you are at the MCF with your DH, as soon as he gets more acclimated? In the meantime you could give maybe a short monthly written update to immediate family?

In addition to confusing him, making it harder for him to settle in, I'd be concerned that they might use unsupervised visits to overstep with soliciting information from the staff as well. Or giving instructions, or taking him out even for an excursion without your approval. No, no. You're right, this does sound fishy. Whatever they want to say or do, if legit, they should understand it needs to be coordinated via a single point of contact who is in charge of what's best for him at all times, and that is you. You may need to alert the MCF director to review any access approvals you have (or have not) provided to be sure they don't try to go around you. Sorry to co-sign your suspicions but if it quacks like a duck, it probably is. And defrauding disabled elders (and their spouses) seems like a thing these days. It won't hurt them to work with you. Its best for you & DH.

M1

Dio I have the opposite reaction to BW--but have not had problems with relatives. I have given out the name, address, and telephone number of our MC facility to a number of her friends (especially from her hometown and those out of town) and any who have asked--and in fact a number have sent her cards, etc. (more that than visits, but there have been a few) with no issues whatsoever. It's not a privacy issue for us. But every situation is different I suppose? I don't begrudge those who don't go--most people are uncomfortable visiting someone with dementia, let's be honest.

Joe C.

My own opinion for my wife is the more visitors the better. I believe that the residents that have the more visitors likely get more attention from the staff as well. DW likes people even though she no longer remembers their previous relationship and is happy getting any one on one attention. She has had friends, coworkers, church and family members visit her who did not visit when she was home. I do not question their motives but then again I don’t believe anyone even asked her to sign anything which she could not do anyhow. Maybe some people feel guilt about not staying in touch in the earlier stages of the disease or maybe they just want to say their goodbyes. To me their motives do not matter as long as they show love & compassion to DW.

harshedbuzz

Dio-

Do you have reason to be wary of these individuals or are you just angry they seemingly abandoned him?

I'm generally in favor of visitors, but I put my younger niece on the "no-fly" list at dad's MCF. She's a drug addict who keeps very questionable company who occasionally attempts to shake-down family for money. I invited her sister to escort her to visit if she wanted to bring the sister "for closure" but it never happened.

@ButterflyWings I wonder if the "friend" took out one of those "no medical exam needed" life insurance policy on your DH naming themselves as beneficiary.

HB

ButterflyWings

@HB - I do hate to be so cynical these days, but I tend to trust people until shown that I cannot, and I am really learning my lesson with the aggressors in this situation. Funny, the insurance policy thing did flash across my mind just last week, but I hadn't really thought such a policy even existed for diagnosed PWDs. Or maybe they intend to produce a different Will or other document at some point, but they would have to backdate it somehow. The main thing I'm learning is how long they seem to have been just biding their time with this disenfranchisement as a goal.

So, dementia is already stealing our LOs away day by day, and now real live thieves have shown up to literally try to take him. I don't plan on allowing it, but we will see what unfolds. I wish I had been much more careful with their access though, so that is what I am sharing here.

@Dio - one of the really great things about this forum is there are so many people who have lots of experience with anything that comes up here. So, with the vast number of forum friends having LOs in MCFs, you have the benefit of perspectives and reassurances from those who know. My comments hopefully reflected that:

1) I have limited direct experience in that regard (respite only)

2) I feel ideally it could be good to have visitors once a LO is settled in,

3) but with some guardrails,

4) as there are unfortunately some parties who are just up to no good,

5) and that you should trust your instincts

I promise not to be Debbie downer for the next weeks and months as we continue to fight predators for my husband (and our home, marriage, and independence per his advance directives which were properly and timely executed). I believe the vast majority of people are good, honest, human beings. Hoping your friend/family callers are in that bucket!

toolbeltexpert

Dio as a pastor I had a congregant who had a grandchild come to the hospital and tried to intimate him to giving her money. I even tried to intervene which didn't help at all. She was eventually successful in getting him to give her money. She followed us from the hospital where he was visiting his very sick wife.

I think it wise to always be on guard, you are the first line of defense.

The movie I CARE ALOT was really an eye opener to the possible ways someone could be defrauded.

Only you know.

Ed1937

If you haven't seen the movie Stewart talked about, see it.

"5) and that you should trust your instincts". I think that is sound advice. There are a lot of bad players out there, and there are some good ones. Look at the difference between BW and Joe C. I think Joe's relationship got stronger with his DIL after his wife developed dementia. I'm sure he feels lucky to have her. Just be careful.

Dio

Thank you, all, for your candid responses. This support group is simply invaluable!

ButterflyWings, thanks so much for sharing your plight and the confirmation on bad things that can happen! I've heard so many other cases where either a family member or friend has swooped in for various reasons and caused legal and emotional turmoil for the spouse/caregiver. Hence, I'm well aware of the bad that can happen, which is why I am on high vigilance. As the first line of defense for our LOs, I strongly feel it's our duty to be the guard for both of us. I don't think you're cynical nor a Debbie-downer at all but, rather, a realist. And I am so sorry you're having to go through more troubling hoops. I wish for a happy and smooth outcome for you.

M1, so glad your situation is all things good. And there are indeed more good people among us, but the few rotten apples will ruin one's life. I don't begrudge anyone who doesn't want to visit DH. I just can't help but wonder why this group won't respect and accept my wishes. All of DH's close friends have; they even asked for permission before taking DH out to lunch when DH was home. And they completely understand when I tell them I don't want DH to be agitated by unannounced visits.

Joe, I'm so happy for you and your wife who enjoys having people around her. Sadly, my DH is the opposite. Even before Lewy Body, he'd rather be alone to recharge, as he so fondly claimed. After LBD, his mood fluctuation was, simply put, unpredictable and downright scary. He screamed at me in the parking lot of a restaurant when he thought dinner with 3 more people turned out to be a party of 10 total, which I had no control over since I was not the host.

HB, I'm definitely not angry with this small group nor feel that they've abandoned DH; they're not that close to begin with. But I am appalled that they didn't have the courtesy to ask/confirm whether it was okay with me to contact DH at the MCF and disregarded my request to be patient, and instead kept on pressing. So, yes, I may be offended by that. And my guards are now way up.

Stewart, thank you for sharing your experience. I do want to see the good in people, but given our dementia lot and the hand that has been dealt, I must be more guarded than ever. If I get the chance, I'll check out your movie recommendation.

Ed, thank you for your always wise advise and knowledge!

I think if this small group had just backed off a little, I might not have been so suspicious. One of them is known to be an imp of sorts, who stirs up trouble for the sake of "having some fun," or "get a rise out of you" or God knows what. He's one who doesn't think before opening his mouth (and I'm being nice here). Even if this group doesn't have any ill intent, saying the wrong thing to DH or having some fun at DH's expense is unacceptable to me.

I hate being so suspicious. I hate being so guarded. I hate LBD.

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