I don't understand this.

[Deleted User]

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M1

Jennifer: what your mom is doing is very common for advanced disease. You and your dad need some help, obviously, and if he cannot function as het primary caregiver then she may be better off in MC. BUT you do not take her to visit, you just make the decision for her. She cannot reason, understand the need,or choose a place-you have to do this for her. The first time she sees the facility is the day she is admitted.

She cannot drive this bus. The reason she had a tantrum is because you are asking her to try to reason with a broken brain.Does your dad hold power of attorney for her? Someone needs to. If that hasn't been addressed, that is the first step.

Edited to add: i looked at your previous posts. This pattern of behavior is not new. She likely will be better off in MC as your dad is not functioning well as a primary caregiver and is overwhelmed. Perhaps he has cognitive issues of his own. But you never did say whether he or anyone has power of attorney. He will need this or guardianship to get her admitted to MC.

harshedbuzz

@jennifer1995

That sounds exhausting. I am sorry for the stress you are feeling.

It does sound as though your dad is burned out. He's turning to you as his support for help in processing what is happening to his wife and marriage, but it sounds like her needs more than that. I get a sense that despite living 24/7 with this condition, he doesn't understand it. My mom was similar initially, it was if she held dad to normal standards of behavior, she felt he'd rise to her expectations. He didn't and neither will she. This helped mom get beyond this behavior which was making the situation worse; it will probably help you and dad:

https://www.smashwords.com/books/view/210580

This sort of "time-travel" is very common in dementia. Memory is lost in a LIFO manner, so when a PWD become disoriented to time/place, they go back to their younger days. Often chronologically, so it makes perfect sense that she had a baby and then regresses further to a time before she had children. This is sad for both of you.

Does he have the legal paperwork to do this for her? If he doesn't already have the POA to do this, he may find he needs to go for guardianship. He is making the rookie mistake of trying to reason with her. He needs to pick a MCF and move her in. He should tour alone or with you, not mom.

HB

ButterflyWings

@jennifer1995 You got some good feedback here. Please review the article HB linked above. "Understanding the Dementia Experience" explains a lot. You can stop being frustrated with your mom and dad when learning that this is classic dementia behavior and she cannot help it - nor can she be treated like she should do better. She cannot.

She is not the same person now, because her brain disease has taken so much away. And it keeps going until it shuts everything down, I'm so sorry to say. In the meantime, it is very, very hard to deal with and to keep a PWD safe.

• Would your dad take a look at this forum to learn more? We can help provide some of the information and support that you wish he would not lean on you for. It sounds like he needs a sounding board at the very least.
• Would he call the Alz 24/7 helpline for a free, confidential, non-judgmental listening ear at these times? The care counselors are trained social workers or senior social work students maybe - very helpful 1-24/7 Helpline at 800.272.3900

[Deleted User]

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M1

Jennifer have you ever asked him if he wants to cede his powers of attorney to you? His behavior would suggest that he doesn't want to exercise it or isn't capable of it. Might be a relief for you to have control and for him to cede it. Just a thought.

It definitely sounds like your mother would be better off in MC and away from this caregiver who doesn't or can't learn what she needs.

[Deleted User]

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harshedbuzz

@jennifer1995 This sounds a bit like my mom.

Ugh. Dad was nasty and off-the-wall, but she was the more challenging parent with which to deal.

A few things that helped beyond, the "Understanding…" PDF-

Getting her a psychiatrist and talk therapist to give her someone besides me to help process this. Meds helped, too. Her anxiety and depression were working against her.

Getting her to an in-person ALZ support group meeting. Seriously. I explained best practices in managing behaviors and I modeled the best practices in my own interactions with dad and it didn't convince her. What helped was hearing her same age peers explain it to her. They would tell her the exact same thing I had, but for some reason coming from them it was gospel. Frustrating, but I'll take it.

And yeah, there may have been that Come-to-Jesus after the second emergency run to their home to calm the situation down in 3 days after she'd gone rogue. I sat her down and told her I would help, but if she were going to continue to ignore strategies to maintain the calm, I was done with the pair of them. Early in dad's dementia before I recognized it as a symptom of his cognitive shift, his mood became darker and even cruel. I checked in with mom regularly by phone but didn't see them (I didn't see dad for maybe 2 1/2 years— I'm their only surviving child and he'd also alienated his only sib and social circles in 2 states at this point) unless she came to my place, so she knew I meant it.

HB

Quilting brings calm

I am a little confused at your terminology.
Durable owner of attorney and power of attorney both refer to legal and financial authority. They give you the authority to write checks, handle finances, sell real estate, talk to people on your mom’s behalf. Durable means that the authority continues even if the grantor( your mom) is incapacitated.

Medical power of attorney refers to authority to grant permission for medical care. My state’s MPOA has checkboxes to indicate always or only when the grantor is incapacitated.

I don’t know which one ( DPOA or MPOA, maybe both) grants a person authority to place the grantor in a AL or MC. Someone here will know.

I think your father needs evaluated. He may be having cognitive issues or he coujd be suffering from anxiety, depression and caregiver burnout. He may not listen to you about your mom …but he might listen to a male peer. Is there a male friend or family member in his age group you can think of that is dealing with this in their own family?

In addition - it might be helpful if you suggested to your dad that you come over one or two evenings a week for a few hours so that he can run errands or just go anywhere alone for a few hours? He probably needs time to himself.

[Deleted User]

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[Deleted User]

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ButterflyWings

It sounds like he should not be leaving her alone, fiblets or not. But as a homebound solo caregiver for 2+ years, I can understand your dad trying to reach out for help and commiseration (though it is overwhelming you and you have a right not to be the one who serves as the outlet for him, especially if he won't/can't listen to you).

Wondering if there is a way to introduce an aide or companion caregiver even from the senior volunteer ranks? Maybe someone that could visit with you the first time or two and then (hopefully) still be welcomed by your dad (and mom) as a solo visitor after that?

This won't last forever at least, but it get worse before he will have no choice but to do something different. On an emergency basis probably because dementia will drop the other shoe sooner or later. I agree that maybe he is experiencing some cognitive decline as well. HB's experience with this kind of parent/spouse denial, and the ultimatum she eventually gave her mom may be the path for you. Maybe putting your foot down if you think dad can still reason?

Not sure what the ultimatum would be, but it can't be an empty threat so be sure you are ready to follow through if you decide to go this route. Like, work with me or don't call me again. Don't leave mom alone - allow an aide, or APS will be alerted. I still feel for him, since I walk in his shoes every day. But I have some weekly help at least and have had a couple of longer respite periods.

If you or someone could give him a regular respite as suggested, you might find him behaving less desperate. Leaving her alone is not the same as having someone there supporting her needs while he is out. She is likely more anxious, agitated, and more work when he comes back if he has no choice but to leave her alone. He must be near the breaking point. I would be.

Could you or the Dr. insist she needs to do a 2 week or 30 day respite stay? At the MC he already likes? Then go from there. They might adjust so well that this extends to the permanent placement that seems best.

jfkoc

Carefully read the documents. It will tell you exactly what powers are covered.

[Deleted User]

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M1

Jennifer, that brings us back to HB's point. It would be hard, but you may just have to put your foot down, so to speak, say you're done, and don't see them or answer calls. it's the only power you have in the situation, the only behavior you can change is your own.

H1235

Is she in danger in her current living situation? Sounds like she might be. Could you call adult protective services?

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H1235

I don’t know your whole story and I know life is complicated. But I want to try and maybe show you a different perspective. In 2022 I was trying to get my mom diagnosed with dementia and moved into a safer environment. At the same time we had some very severe mental health issues in my home. Between the two police were involved, multiple hospital visits, my mom was living in filth and both lo were refusing help…. I was a basket case. I could barely function dealing with both of these things at one time. When I called my daughter to talk (because I really needed someone) she didn’t want to hear it. It was too stressful for her. Yet I was living it 24/7, but just listening to me talk about the absolute chaos that was my life was too much for her. I probably should have found a professional to talk to, but I didn’t have the strength to even think of that or the ability to take the time for it.
I would encourage you to go to the board for partners and read a few posts. If you feel stressed over a few phone calls imagine how he must feel living with it 24/7. Even if he isn’t the best caregiver he is probably still stressed, heartbroken, and maybe confused about how to handle all of this.
Again I know I don’t know the whole story, I’m just trying to give you a different point of view. Hope I didn’t overstep here.

[Deleted User]

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Quilting brings calm

There’s a sad saying in the forums here - “Sometimes you have to wait for the crisis”. After reading your responses to our questions and comments, I think that is where you are. Your dad is unwilling to call in help or to place her in a staffed facility. He wants someone to tell him what to do and you are fed up with telling him what to do. Your sister wants to be in charge from 2800 miles away ( where she is totally insulated from the actual daily life).

At this point, I think what you want most is for you to be able to interact with the situation when you can ( as in outside of work or transitioning to home). You want him to be the caregiver and leave you out of it. And to feel it’s ok to limit your interactions to what you feel you can do. So probably the best move is to put your phone on do not disturb during those times and checking it when you can. And waiting for the inevitable hospital visit for your mom to get someone to place her for your dad.

mommyandme (m&m)

I’m so sorry for what you and your family are going through. It sounds like you are genuinely “between a rock and a hard place”!

I don’t have much to add but thought if your dad could journal in a sudden way, if he really wants to call but shouldn’t, just to get it off his mind for the moment. Probably not practical I imagine but maybe?

This dementia journey definitely thickens the skin of caregivers yet your dad isn’t even close if he even ever will be. It seems to me we all start a bit soft but eventually harden up. I wish I could be of more help. They are fortunate to have you in their corner.

[Deleted User]

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H1235

https://alzconnected.org/discussion/comment/211152#Comment_211152

Things make a bit more sense now. I would find your total and complete lack of control over all of this beyond frustrating. My brother also believes lies are wrong. It makes me want to scream. To upset mom just so he can have a clear conscience and know he has not lied. QBC might just be right about having to wait for the crisis. It’s heartbreaking. So sorry.

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SiberianIris

This might be a longshot, but is there any chance your dad would listen to a podcast done by a man (Ken Cardita) whose wife has ALZ? It is an excellent podcast, and I especially like the way Ken speaks. It is very soothing to listen to, informative, and I always feel better after each episode. (My Mom has ALZ, and it was the first of many dementia podcasts I follow.)

I think the fact that the speaker is a man whose wife also has ALZ might really resonate with your father. Maybe you could listen to the first one with him. Here's the link: https://ascending-minds.com/blog/post/

housefinch

Nothing left to add except I’m very sorry you’re facing such a difficult situation. It sounds beyond stressful. I was at my wits end over my family member’s refusal to see reality and take appropriate steps to keep our PWD safe. And yet I was really emotionally exhausted 24/7 carrying that burden. I finally had a wake up call about my own health and stopped being available for my mom. Suddenly she had to solve her own problems. It hasn’t been perfect, but wow do I feel better. I am in much better physical and emotional health, too. At some point, particularly if you have your own mental health condition, you have to put your own oxygen mask on. I turned my mom’s texts to silent and choose whether to answer her calls. Hugs to you.

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harshedbuzz

Is dad OK?

His need to "unburden" seems very different from the way many people (men especially) operate. I think my dad had already died before I had a full picture of some of his behaviors in the middle and even later stages which came out over time, often over a glass of Chardonnay.

Often when a person has a mental health issue, it's because the little apple didn't fall far from the tree, so to speak. I dodged the Bipolar and psychopathy of dad's people but was blessed with mom's family's anxiety and a pinch of ADHD. My poor son is an Alphabet soup kid who got some of everything.

His rigidity in being truthful and having it blow up in his face and not learning from it is worrisome. You could be looking at a subtle or early cognitive shift on his part. This is fairly common in older couples where the less progressed one or the one with copious cognitive reserve flies below the radar for a time.

This is a really difficult situation. At the end of the day, you need to take care of Jennifer. You may not be able to change dad's behavior. Perhaps he can't change because of the way he's wired or was brought up. Or maybe it's the result of a family dynamic where a man of a certain generation isn't going to a defer to any child, much less a daughter.

Is there a way you could trick him into therapy where he could not need to tell mom? Perhaps you could line something up and propose it as being for you and the therapist wanted dad to come and support you? If not maybe you need to disengage.

I know your heart is with them, but you may need to accept that there is nothing you can do to remedy the situation and that on the balance sheet destroying your own health for no benefit is pointless. You also have to consider whether your involvement is enabling him and delaying care. The ER as access to a geripsych admission would get mom meds to help with her agitation and delusions in the fastest manner possible. If you didn't come in to calm the situation, what would happen? Would mom go to the ER and get the care she desperately needs? Would your dad get a couple of days to recharge and process next steps?

Maybe it is time to put some distance between you and the situation. It's doesn't sound as though your well-intentioned efforts are making and lasting improvement to the situation. If your mom can't use a phone consistently and is sundowning 24/7, her orientation to time is not reliable. She won't know how long it's been since you talked or came by. Mom and I used to rotate visits with dad— I'd go one day and she'd visit the next. To hear him tell it I was there "all the time" and she "never comes to see me". And my uncle who made one drive-by visit the entire time her was in the MCF? Evidently, he lived right down the hall and they met for drinks nightly.

In any case, I would suggest a Plan B for you. When mom was blowing off a need for dad to be evaluated, I found the Memory Center where I wanted him seen, started touring MCFs and even found a CELA (they had no paperwork aside from Wills). I knew I'd need to move them closer to me and started looking for a place they could live. When the shoe dropped, instead of taking dad to the craptastic local hospital, I had mom load him into the car and drive him 3 hours to the ER associated with the Memory Center where he got his diagnosis. Once he was diagnosed and we dealt with the moves, I strengthened my Plan B so that I had a place dad could be admitted on-the-fly if death or illness prevented her from being his caregiver.

That was a really hard time, but knowing I had a shovel-ready plan got me through it and simplified life when the shoes eventually dropped.

HB

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harshedbuzz

@jennifer1995

Families are hard. They can make dementia an even bigger challenge than it already is. This is going to sound ghastly, but sometimes it was a relief to not be navigating dad's dementia with my sister who had passed 25 years earlier. She was "daddy's girl" and would have sacrificed mom's health and wellbeing for a potentially larger inheritance.

TBH, your dad sounds a bit like a man on spectrum to my ear. I have a 30-year-old-son with what used to be called Aspergers and much of his behavior sounds familiar.

You truly don't have a lot of options if you aren't willing to walk away on mom. When dad was on my no-fly list, I was able to invite mom to come visit me and we sometimes traveled to see her family without dad on tow. It wasn't all or nothing for me as it might be for you.

A CELA is a certified elder law attorney— my folks hadn't done any planning of this type as dad was paranoid that I would "put him in a home" and take his house. I did manage to get him placed, but I haven't stolen the house yet.

There aren't a boatload of geriatric psychiatrists anywhere. But I imagine there's one within an hour's drive of your location. Waiting lists can be several months long and insurance can sometimes be tricky as not all take insurance, and you have to pay out-of-pocket. That said, with the kind of distress you are describing, it would likely be worth every penny if you can make it happen. Dad's geripsychs were the most important part of his care team aside from mom. Neurology is great for getting a diagnosis, but geripsychs are the ticket to a better quality of life. That said, if mom won't take meds, it doesn't matter who she sees or what they prescribe. Medicine that remains in the bottle is going to be ineffective. Are the meds something that could be crushed and hidden in her morning juice and evening ice cream? One member here hid mom's meds inside the raspberries on her daily oatmeal almost like a pill pocket for one's pet. A pharmacist could advise about crushing or compounding into a suspension.

A Plan B for you would be to pick the place for mom if something happened to dad. I hope you don't share POA duties with your sister.

HB

Emily 123

Hello,

I agree with HB. It sounds promising that your dad's testing the waters in terms of getting mom into a facility where she can have the 24/7 oversight. It's good that he can recognize that her care needs have outstripped what he can reasonably provide. He sounds like he's teetering on having panic attacks.

It's unfortunate that he's very rigid in how he's able to interact with her reality and with how he tries to receive validation from you, but it doesn't sound like this is something he can manage well, for whatever reason.

Since he can't retain that she's unable to reliably make decisions for herself, his healthcare provider's recommendation to take her to the ER for assessment and discharge to MC might be the easiest route to take, rather than all the drama of visiting facilities she won't remember. I would not dissuade him from that, as it may be that the requirements for making the move are beyond his capabilities at this point, either mentally or emotionally, and taking it out of his hands will expedite things—that may be where his provider was going with the advice to utilize the ED. It will also allow the parent with dementia to be moved first and then the other parent's needs can be assessed once the dust settles.

You both sound overwhelmed by the effects of your mom's care requirements and moving forward with placing her would help resolve a lot of the stress and conflict. Greyrocking your dad may be the only way to handle him, but as you note that's not helpful for your mom, and of course that doesn't feel good to you. I'm so sorry that you're in this difficult situation. I'd lean towards the provider's advice because it will take the placement process out of your dad's hands and get your mom moved with less input from him. HB's advice about a plan B is good.