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My Mom is so upset that I didn’t tell her about my Dads surgery & believes we’re keeping it from her due to her dementia. This is truth. Dad & I were waiting till we got a procedure date to tell her as she won’t remember. She went on his private Kaiser site & discovered he needs hernia surgery & called me crying & angry that I would keep this from her. She hung up on me. I can only imagine what my Dad is dealing with at this moment. My biggest concern is losing her trust. I’ve always had a close relationship with my Mom…but her anger & sadness towards me (Im 59 yrs old) brought me back to feeling 5 yrs old again. I know we have bigger problems ahead with this disease but am at a loss on how to recover her trust from this. I was shocked at the level she went with this but understand she will have trouble regulating emotions. Any suggestions?

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Create a memory book for her. Put important dates and information in the book. This way she has access to important information that she is likely to "forget".

Contact her and explain that "you and Dad" decided to wait to tell her until there was a surgery date. Apologize for her discovering this issue in the way she did. Offer to start the memory book and that you and Dad will help to keep it updated so she will always be in the loop.
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You can't expect "to gain trust" from someone who has a broken brain. Perhaps you could post at the house a big note about the surgery.

My mother who is in hospice care cannot remember that her pain medication is to help her with pain. In my mind that seems so basic. Instead we visit her and she says she is in pain yet she refused her morning dosage. She tells us she didn't refuse it. I realize your situation is not as severe but you need to understand that you must lower your expectations considerably regarding her memory. Sadly it only gets worse. I say that with hope that your situation doesn't prove so. I have to lower my expectations every week at this point.
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She has dementia. Can she really remember for any length of time? Now that you have discussed it with her, if she brings it up again say, “I did tell you.” I think you’ll find that she will say you did not, because she can’t remember. Or, she may never mention it again. With dementia reality is changed for your mom, and you can’t bring her back. She will continue to do this until her disease progresses. In the meantime, just go along with whatever she does and says. Begin planning for her move to a memory unit. It’s not fair to your dad to have to put up with this everyday. Also, tell him to change his password to his medical information and don’t admit it to her.
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You gain back her trust the same way you earned it. You speak the truth and you do what you say you are going to do all the time. You watch how you speak, you use words that are appropriate for the situation, and don't make promises you cannot keep.

In many ways, it wasn't you that should have told her, your Dad should have. You need to have a conversation with your Dad and get him to own the fact that he didn't tell your Mom for whatever reason. Then the next time she brings it up in conversation, point out that it was your Dad's decision and she needs to discuss it with him. Don't let your guilt get the better of you. You have a lot ahead of you and you don't want guilt to be a factor of those decisions.

On his side, he has good reason why he waited to tell her. He needed a date for the surgery....that is a solid reason so neither of you should feel guilty about not telling her.

However, there is a lesson here. Your Mom may have the beginnings of dementia, however, she is much more capable than either of you are giving her credit for. She may have dementia in one area, and be totally fine in another. I think the lesson is that you both need to treat her as if she didn't have dementia and just that she is forgetful or having a hard time staying on task or anyone of the normal ills that befalls older people that could look like dementia.

Also, if she hasn't had her hearing checked or her eyes examined, please take her to a specialist for those things. There is a lot of research suggesting that hard of hearing leads to dementia diagnosis.
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Sherry3: There exists no logical thought processes when the individual has dementia, e.g. she would be angry either way/whether she knew about her husband's surgery or she didn't.
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If she is capable of going on medical sites and entering passwords (and navigating through all their windows), I would have her reevaluated for memory issues.

Are you their POAs? You might be trying to control things too early and she resents being left out of the loop?

Have you consulted with a Geriatric Psychiatrist to hold a family meeting?
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If your mom is “with it” enough to get on a computer and look into your fathers med info, than she is “with it” enough to be told things.

Just apologize and say you were waiting to tell her, and you were not keeping it a secret. Promise to include her in things. There will come a time where you won’t be able to include her, but right now, she seems to have a good understanding.

Remember it’s a progressive disease, just because she was diagnosed with dementia doesn’t mean she’s totally “out of it” just yet…it will come though.

Enjoy your mom and value her input while you can.
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If she can use the computer to look things up and understands what she is reading, I wouldn't keep things from her. You may have to repeat it down the road, but clearly she still has a higher level of comprehension.

If you're close enough, go there and talk to them both. You might try telling her there wasn't a date set up yet and both of you didn't want to worry her until appts were in place. Assure her that this won't happen again
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My Mom makes me feel like I'm 5 years old sometimes, too! (smile) I've been caring for my mother with dementia for almost 4 years. I would have told her about the surgery then written it on her calendar, to which she refers regularly. And, I would expect to remind her about the surgery in the days prior.
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Dementia causes processing errors. You had no concrete info to share. She has jumped to conclusions. Explain, the doc recommended it, but it has not been scheduled. Please ask her to do you a favor and keep checking the portal for the details and tell you when they are posted. Unless your father said you can share HIS health info, you really can't. Firm boundaries are needed in the future.
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It is your father's responsibility to tell his wife, not yours.

I wouldn't get all worked up over this, she will get over it, she has probably already forgotten the entire matter.

If you get upset with every little thing relating to a person with dementia you will drive yourself to an early grave. This is only the tip of the iceberg.
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Caring for our parents becomes complicated at times, doesn’t it? It isn’t always possible for us to see things objectively.

I took care of my parents too. I helped my father after his stroke and after he died I continued to care for my mother who had Parkinson’s disease and dementia.

Mom moved into our home and as you know it is challenging to share a home with our parents.

You are in an awkward position living with your parents. No one likes to be placed in the middle of other people.

Even though you are trying to help by being concerned about each of their desires, it is vitally important to start planning for their needs for future care from a complete staff.

If your parents were living in an assisted living facility you would be free from the daily responsibilities.

Stepping away will force your parents not to place you in the middle. They will learn to handle their situations with the help of others or figure it out for themselves.

Your mom most likely feels abandoned by you and your father. Your dad will have to decide what is best for each of them and act accordingly.

Give your mom a chance to process her feelings and I would think that in time she will understand that your intentions were not meant to hurt her.

You deserve to be home with your own family.

Wishing you and your family all the best.
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I would have Dad change his password on the portal, then she cannot get in. He has right to keep his health information to himself. Even a wife has to be on HIPPA paperwork. Because of his deafness I really don't want my husband involved in my care without mt daughter present. He misses too much in conversations. It only takes one word to change the meaning of a sentence.

I would have done the same thing. Not told Mom until all the info was in. And yes, it was done because of her Dementia. Even if she had no Dementia, your Dad did not have to tell her till he was ready.

Sorry, you are the scapegoat it happens.
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You could have told mom and run the risk of her freaking out. So you didn't tell her and she found out anyway and freaked out.

Here's the moral of the story: we all lose when dementia is running the show. No matter what we do, we're wrong.

It seems to me your parents need Assisted Living and you need to move back to your home full time. Trying to juggle the care and management of two sick parents is nearly impossible. I wound up having both of my parents placed in AL after dad broke his hip and it was THE best decision ever. Trying to be Superwoman rarely works out in the long run.

Dementia, as it progresses, wreaks havoc on everyone like you can't imagine. If it wasn't for the excellent care my mom got from "her girls" in Memory Care, I shudder to think how things would've played out.

Please take your own well being into consideration when you make decisions concerning your parents. Most of us are not qualified or equipped to nurse TWO elders thru such health issues at home, in reality.

Best of luck
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It's Dad's place to tell Mom, not yours. You might point that out to her then tell her you'll wait for her apology.
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BarbBrooklyn Feb 2023
I wouldn't wait for an apology, lol.

I WOULD go back home.

First I would call the local Area Agency on Aging and get a needs assessment. Then, I would call a "Senior Care Advisor" or geriatric care manager to manage these folks into a facility.
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I understand why you'd want to protect both of them. What you haven't grasped (yet) is that you need to protect yourself as well.

You don't have to give up your life for your parents. That's something that parents might want you to do, but you're a grownup with responsibilities of your own. You don't have to become a child to make them happy. You should lovingly make clear to both of them that some of their needs are to be met by themselves. One example: Dad being honest with mom. He wasn't, you went along with that, and now everyone suffers.

Call a family meeting with dad, mom, and you presiding. Everybody get it all out on the table - dad's cancer and upcoming surgery, your mother's treatment for dementia, and your needing help and relief from caregiving and drama. The meeting leads up to your insistence that they need in-home caregivers, if that is the wish, or facility care for one or both. Your leading of the discussion should be aimed toward consensus - not conflict.

If you don't get help and fall apart when their health conditions become worse, you're doing them no favor. Then it really is worse for them, and you've already brought up the questions about who would care for them and starting the process for in-home care.

They may be shocked, they may rant and rave, especially mom. But you clearly cannot handle all of this alone anymore. What you CAN do is take charge and be strong. It seems daunting, but lots of people have to do that, and you'll feel better once you stop deferring to their now diseased and distraught thought processes.

Wishing you luck in this sad situation.
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Barb is right. Why didn't your Dad tell your mom?
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From your profile:

"My Dad who is 81yrs old was diagnosed with throat cancer in June & I have been caring for him through all of it. I’m living with them & go home for a total of 15 hours per week. I have discovered that my Moms dementia has significantly escalated & my Dad didn’t want to worry us as he was managing her care. I can see that once his cancer treatments are finished, there is no way he can care for her. The mood swings, OCD behaviors, confusion, depression. I’m now on a path of discovery & just starting the navigation process through all of this. I had my Mom see a neurologist who put her on Aricept, & we have a psychiatry appointment to address her depression. Some days are so difficult. I’m confused, & scared about what’s ahead & the decisions to be made. Will I be able to go back to work? Who will care for them? Why do I feel so guilty because I want my own family life? Do we start process for in home care? How long can or should we do that? Assisted Living? This forum will be so helpful for me with others who have or are experiencing elder parent care. Hoping to find answers."

Well, why is this on YOU to tell your mom?

It's dad's surgery, right?

Why didn't HE tell her?

Is she mad at him too?

I'm glad you have a geripsych appointment to address her mood swings and depression.

I would STRONGLY advise you NOT to move in with them to provide full time hands on care. Keep your job.
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Wow. I don't blame your Mom. She is well enough/with it enough to go on his Kaiser site? But here you are hiding this?
The best thing, in my humble opinion as an old retired RN, to know going into "this disease" is to maintain honesty and dignity as a prime imperitive. What could happen if she knew about the surgery? She could worry? Normal, right? She could cry? Normal, right? She could ask questions? Normal, right?
There is already going to be a level of paranoia with any demenia. Feed that paranoia and you create a raging beast.
I believe in honesty. Lose the trust and it is really difficult to regain.
So time to sit down with Mom and Dad, and to tell your Mom "I am so sorry. I used what I thought was good judgement not to burden you before things were all set up and ready; I was trying to spare you and instead I made things 10 times worse and may have lost your trust. I can only tell you that I won't do that again. I will be honest with you. It was a lesson to me. I hope you can forgive me. I hope I can regain your trust. I did something out of love, but I was wrong."
You cannot do anything about dementia. About how it progresses. About how your Mom will react. But if you are honest you will at least know that YOU aren't to blame for added pain. In this instance you are.
I am 80 and have no (that I know of, hee hee) dementia, but I would LOATHE being treated as a child, with my own child deciding for me what it was best I know or not know. Your Mom is experiencing loss upon loss upon loss with age. Now she is being treated like a helpless infant.
Therapeutic lies they call them. There is NOTHING therapeutic about a lie. Just my humble opinion.
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Sherry3 Feb 2023
You are cold hearted & your words sting like a fat needle!!! Everyone else here had solid advice & gentle sternnesses. As a caregiver your words are cruel & not supportive! I have resolved the issue with my parents. Forgiveness & understanding have taken place. There is lots of love in my family & I treat my Mom with utmost dignity & great respect! Ive made a mistake in my dementia caregiver journey as most people do. I see that plank in your eye! Matthew 7:3-5. Please DO NOT EVER comment on my questions or concerns again…& may peace be with you.
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Well I guess count this as a lesson learned huh? You thought you were protecting your mom by not telling her, yet she had the wherewithal to go on her husbands doctors portal to only find out things for herself.
Her dementia obviously isn't that bad yet if she can figure out how to do that, so until it does get bad(and it will)just tell her what she needs to know and if she forgets well so be it.
So just be honest with her as to why you didn't want to worry her needlessly and apologize, and move forward from there.
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