Aides at care facility have asked that I no longer say no or that isn’t possible, or I can’t because it agitates her so much and winds her up. They say to just play along. I’m fine with this but her latest demand is that I petition the court to alleviate my older brother of guardianship and take it on myself. She thinks this would bring her back to living independently with help. Even if it were possible, my brother has been doing an amazing job, I agree with all his decisions and frankly I’ve also seen her treatment of him for doing the best thing for her (a lot of angry voicemails) because she just doesn’t understand her own condition. So anyway, I’d like to just dodge the question somehow. My father thinks I should say something like I can’t, so I don’t get her hopes up. And when this happens, she usually threatens any inheritance being removed even though all her finances are under the purview of my brother. He thinks I should just say something like, I trust your judgement and do what you got to do and thank her for the times she has helped me out. Worried though that might further diminish her mood since my dismissal of that would take away what leverage she thinks she has and cast her into a hopeless state. If there is some way to avoid the conversation entirely, I am all ears. Thanks.
Tell her that when she can demonstrate to her doctor and the judge that she can do all her ADLs then they will review the guardianship. Tell her it's not in your control. Then change the subject or walk out of the room and go home.
The person with cognitive impairment doesn't get to drive your bus.
I get why the facility is asking you to just go along with her, it makes her less agitated during and after your visit. And since it sounds like she has some level of dementia if guardianship was established, you cannot argue with or reason with dementia.
In my opinion, the fewer details you share with a someone with dementia, the better off you are. Because you never know WHICH details they will forget and which ones they will just randomly remember and assign to a different topic altogether and take completely out of context. So in this case, less is more so to speak.
I'll give you an example. My FIL was in a SNF the last 8 months of his life. At Thanksgiving that year, we had several conversations with him we wouldn't be with him at the facility ON Thanksgiving Day (because for 30+ years MIL preferred to celebrate the holiday the day before or the day after - and BIL and my families had adjusted everything for holidays around that schedule.) That BIL and SIL were with his family on the day and that DH and I were with my family on the day. But that we would come to the SNF the day AFTER and bring him a big plate of food. We had this conversation MULTIPLE times.
On Thanksgiving night, we got a frantic and very upset call from my FIL's sister, who lived 10 hours away and hadn't spent a holiday with him since they were children. She hadn't even seen him in 10 years in person. She calls yelling at us because we "abandoned" him in the SNF and didn't even bother to visit him on the holiday and how could we and blah blah blah. We told her that wasn't what happened, that we had prepared FIL over and over of what was going to happen. And that we were taking him a full meal the next day. She finally stopped yelling and hung up.
Not long after that we got a screaming call from FIL about abandoning him and not visiting him and how dare we not come see him and all of this diatribe about how my DH and SIL were terrible children blah blah.
We explained to him again that we were coming to see him the next day and bringing him food etc.
The ONLY part of what we told him multiple times that actually stuck - was that we weren't coming on Thanksgiving Day. That is what he honed in on and that is what he told anyone he talked to.
I think maybe if he we hadn't even mentioned it at all - and just shown up with the big plate of food and "Happy Thanksgiving" - given the fact that he refused to leave his room for meals, there is a good chance we could have avoided the entire situation.
Dementia is a hard disease.
You can be honest while realizing the goal in communicating with her is to keep her as calm as possible. So, there is NO ACTUAL LYING when communicating with a person inflicted with dementia. You tell them what will hopefully, possibly keep them feeling safe(r) and calm.
- and it is important to not over-explain. You say something once then change the subject.
- I often would say to a client 'that is a good idea, I'll think about it and get back to you.' Then change the subject.
Consider most important behaviors dealing with dementia:
1. Non-verbal communication:
--- voice tone
--- facial expressions / making eye contact), smiling
--- gentle touch
2. Re-directing: conversation.
3. Reflective listening (with dementia, you don't have to go into this much if at all - as they cannot comprehend) - although it is a good tool / skill to have.
* You repeat back to the person "I hear you saying xxx" -
4. YOU TELL HER WHAT SHE WANTS TO HEAR in very vague terms:
Okay, I understand (they want to be heard and this validates that you are listening = respecting them)
Ah yes ! ... that's a good idea, I'll check into that.
Then re-direct ... offer hand massage or something / a distraction.
I direct everyone to go to TEEPA SNOW's website ... take her webinars, watch her You Tubes, buy a book or two.
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You need to realize that you cannot diminish or change her mood. She will do that regardless due to dementia (fear / confusion) due to brain changes.
Yes, she will go through mood changes.
This is to be expected.
Possibly medication can help.
Mostly ... or equally, you need to learn to be assertive WHILE being compassionate.
You appease her as much as possible. i.e., keeping her calm, saying:
"Yes, I understand you completely and will take care of it". End of story.
No more explaining. Change the subject.
Do not speak about any legal or otherwise specifics (as much as possible).
You are VERY FORTUNATE in that your brother is doing a great job.
And yes, I agree with the staff: Do not say anything ("truthful") which will upset and scare her. Remember, she is very frightened of the unknowns, losing independence and her mind.
If you get rattled, leave for a minute and regroup. These are NOT easy territories / situations to manage. It is trial and error, knowing you are doing the best you can in any given moment.
I have (99%) always been 'honest' in that I may say
I don't know, I'll check into that.
Your response has to fit the situation, of course.
Remember, too, the key is to keep them calm by giving them H O P E.
If you think in those terms, it will help you know how to respond.
You are doing very good. Give yourself a lot of credit.
Gena / Touch Matters
I was a professional caregiver for 25 years and a supervisor at a very nice AL. There is a way to avoid the conversation entirely. That way is to refuse to discuss it with her. When she brings it up, tell her plainly that you're not talking about it anymore. Then stop talking about it with her. Try to redirect her onto something else and only give her the answer of 'we already discussed that' or 'I'm not doing that' if she persists. End a visit or phone call if you have to.
Your mother is not going back to living an independent life where she does what she wants and goes wherever she wants to. Giving her false hope that you're fulfilling her demands and that will result in her going back to her former life, will ruin whatever quality of life she can still have. She won't allow herself to acclimate to where she is now even try joining in with social activities if she fixates on you getting her out and she's only there temporarily. She'll likely get in a dementia loop with this and she'll obsess about it every minute.
Don't play along with that delusion. It's not your job or the family's to make the staff's job easier in the moment by going along with your mother's demands. None of us are working for free and your mother may need to be on anti-anxiety medications. This is something to discuss with your brother.
So I would tell the facility that you will not be lying to your loved one. That you will tell them that--for instance: "No, mom. George is doing a great job and honestly I simply am not capable of it, so he will be continuing to manage these things. He loves you and he has only your best interests at heart, and he always talks about all the decisions."
It is going to have to come to her understanding that she has suffered a huge loss, and to you acknowledging that loss and how deeply it hurts you to see her so in pain over it, but that some things just can't be changed.
Now, certainly you can TRY it their way. And you can simply tell them that it A) makes you uncomfortable to lie and B) makes her angry to be lied TO, because no matter how far gone she is it isn't far enough to know people are "playing her".
So you could TRY saying: "You know Mom, I think George and I will be talking later in the week and I will talk to him about that, but I think I really don't have enough time or knowledge, so we will see; I will let you know"
or "I will talk to George" and later "Well, I just couldn't get George; so let's talk about what you had for lunch"....................
But you know, being dishonest just goes on and on and on. And I think NO ONE is helped by it, that I can see.
Following your advice would lead to constant fights and arguments that serve absolutely no purpose and are emotionally/mentally unhealthy for all people involved, including the one with dementia. Why? Because (in cases like this one) the fight/argument/disagreement resulting from truth and not sidestepping will be forgotten by the patient... sometimes as soon as the next day. Then, at that point, the person raises the issue yet again, and you go through the entire fight/argument/disagreement all over. That makes no sense at all to put anyone through. (Again, we're talking about requests or demands that can't be met or are unrealistic.) How does that improve the dementia patient's quality of life?
Theoretical but realistic example: My mom wants to go home — to the condo she sold three years ago — and puts up a huge fight when told she can't. The therapeutic lie to delay (like saying the place is being cleaned/repaired, etc.) totally prevents the fight and leads to a nice evening of conversation otherwise. On the other hand, the "no lie, no sidestepping" approach leads to the big fight and will continue to do so and never end, visit after visit.
I hope this explains why it is not "wrong wrong wrong" to lie and sidestep in some situations. There will be no hope or anger or disappointment because the person with dementia will not even remember the next time the issue comes up. (And to be clear, I *am* talking about people with this level of dementia... but this is usually the case with someone who is making unrealistic demands that they continually forget they're making.)
Last, your advice "It is going to have to come to her understanding..." ignores the basics of dementia. At the level we're talking about, they literally cannot "come to an understanding." Their brains are damaged such that this isn't possible, at least not regarding unrealistic things they keep asking for. It's like asking someone paralyzed from a stroke to walk up the stairs.
Not saying what you should do, but for me I telly mom everyday that I want nothing from her. Zip zero, not even a rock, that way my whole family can't hold anything over my head, I do what I do because I care, I don't do anything out of expectations, no one can telle what to do, and I have the security to know I can walk anytime I need to
That is just me and how I feel, not everyone feels like I do but just wanted to tell you, that this is an amazing free feeling!
Best of luck
". . . she usually threatens any inheritance being removed even though all her finances are under the purview of my brother."
Anonymous' certainly does NOT seem to be worried about being taken off the inheritance. Her entire post had nothing to do with inheritance except for mentioning in one sentence what her mother said. How many of us have heard those very words over the years? The person speaking them is manipulative, and I believe OP is well aware of that manipulation.
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