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My mother has early dementia and is 86 years young. My problem is not with her it is with my older brother and youngest sister, my middle sister gets it! I have been taking care of mom for 9 years, the last 5 with POA. My parents built our house, it is a two story round Deltex home with the bottom half built into the side of a hill, able to withstand a category 5 hurricane. Mothers dementia has progressed to the point of not wanting to leave her home, it is her safe place. There are two types of dementia and Alzheimer's, I call them the stayers and the leavers. The neighbor down the street is a leaver, she walks away from her home quite often. My mother is a stayer, she will leave to go to the doctors, that's it! Every time it storms (We live in N. Florida) My brother wants to move her to his house 2 and a half hours away. Mother refuses to go, my brother and youngest sister thinks it is me wanting her to stay! Mother's doctor agrees with me and my middle sister's mom should stay where she feels safe, moving her against her will causes confusion and exacerbates her condition. Both sisters have experienced mom's melt downs when they have taken her away from her home! Let me tell you they are scary!!!


I have tried to tell them it is part of her disease to no avail. I have asked them to speak to her doctor, look up the disease on line and or talk to people who are caregivers, again, to no avail! Neither one visits her more than three or four times a year, when they do she is good at playing down her illiness. They are now taking me to court for POA. My middle sister, neighbors and friends, both of mom's doctors are on my side, I have a better case than they do. I am ready to shoot both of her slacker children! (Just a figure of speech!) My brother and sister talked about sedating mother to move her, it will be over my dead body! They believe that it is just an inconvenience to mom and nothing more. How do I convince them it is the disease stupid! And not me?

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I completely feel for you.

And so, I will put money on it, will the court. Your brother and younger sister - I would say, they have a lot to learn; but the fact is more likely to be that they don't *want* to learn and they would much rather believe that you are a control freak than go to the trouble of really understanding dementia. Which, let's agree, is pretty hard work.

They are not doing it to be evil, they are not doing it with the intention of making your life harder and more stressful, they sincerely believe that mother would have a *lovely* time and you are a spoilsport/wet blanket/dog in the manger etc.

They are ignorant as... all get-out.

Take deep breaths. Invite them to visit. Try one of the widely-recommended books, such as the 36 Hour Day; or put them on the Alzheimer's Society's mailing list. And then do your best to forget about it - heaven knows you have enough to deal with.

Or - I suppose you could tell them to Ask A Question (should we sedate and uproot my mother from the home she feels safe in? Surely that won't bother her much?) on here!
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Cecicando Aug 2019
Thank you for your suggestion.
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You can’t convince anyone of anything they choose not to believe.

I am sorry that you have to deal with their behavior. I hope one day they will be able to understand what the situation truly is.
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Cecicando Aug 2019
Thank you!
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Are you sure your siblings aren't actually after the financial PoA...? Just a thought.

On a related note: my 2 aunts in south FL (97 w/dementia and 100 no dementia) get taken to their nephew's house in the same town during hurricanes. He and his wife entertained the daylights out of them for 2 weeks during the last one -- aunties thought is was great fun! I too was nervous about them being taken. Turns out I had nothing to worry about. Next time they want to take your mom due to a storm, why don't you both go stay with them? If you are her PoA you have every right to request this.
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Cecicando Aug 2019
Thank you for Your reply, We lost electricity after Hurricane Michael, I tried to get mom to go with me to stay in a hotel room. I told her we could have hot bathes, lay in bed, order out and watch TV, she said, "No honey, but you can go!" I don't want to place mother in a situation where there could be repercussions. The last time my sisters took mom to meet the new great grandbaby 8 hours away, with mother knowing that she would spend the night. Mom had a complete meltdown when she realized that she wasn't coming straight back home. Not only did the sister's drive her back early but mom still tells friends and family that my sister's tricked her. Mother is even more suspicious and nervous about leaving the house, otherwise I would let my brother learn the hard way. I won't do that to mom, it could cause her to have a heart attack or stroke! If she is to die, then let her die in her own home where she feels safe. I am our mothers caregiver, I take that very seriously, it is not about them!
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You won't have to, the judge will. I am so sorry you have to deal with them. My mother is a leaver, we had to place her in a Memory Care home. She found a window in the first home and climbed out of it. Got out to a road and flagged down a car. One of my brothers thought we were being mean to her, came from 2 states away, I'm not sure what he thought he would find, but when he and his wife got to the home and tried to leave my mother chased them. It took several people to keep her in the unit. It is sad that your siblings don't want to understand. I often wonder why people think some of the things they do. Wanting someone who is happy where they are to move to where they don't want to be and put them to sleep to do it. Not even a healthy person could handle that. Oh wait, it's called kidnapping.
Good luck to you, sending prayers.
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Cecicando Aug 2019
Thank you Ravin1, so sorry about your mom.
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I would leave it to the attorney to handle. Sometimes ignorance is just inexcusable. I'd try to get reimbursed for attorney fees if they persist with unfounded claims.
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Cecicando Aug 2019
Thank you! That is exactly what I have done ! I am counter suing! This has cost me $5000.00 so far, money is dear to me because this is my job, with no money coming in no health insurance, leaves me at a disadvantage!!!
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Cecicando,

So many people think they can ride out a storm but why go through that agony. My mom complained the entire trip to Houston from New Orleans when we evacuated for Katrina. It took so long. Traffic was horrendous due to so many people evacuating.

I am with you, be as comfortable as you can be while away with conveniences rather than being home in the storm without power.

So many people died in New Orleans because they didn’t evacuate. Katrina wasn’t an ordinary storm though. Horrible that mom lost her home but our lives were spared. That’s what is most important.

We were lucky to get a hotel suite. Hotels filled up quickly. I called my friend that lived in Houston. We were friends for a bazillion years before she moved there and I was so happy that I would be able to meet her for lunch.

She was so sweet. She has a huge home. She invited my entire family to stay with her in their home until it was safe to return to New Orleans. We gave her money for groceries and she wanted to refuse it but I insisted that she accept it. I shared with cooking and cleaning. She has a housekeeper but when kids play there is always picking up to do. Her kids and my kids get along well. Her husband is a sweet guy. He and my husband played golf.

My friend spoiled my mom. She even took her to her favorite hair salon to be pampered. She’s a great friend. We could see and hear from the news that mom’s home was most likely destroyed.

Mom didn’t have a home to return to. It was horrible. She had nine feet of water. There was only one thing left hanging on my mother’s wall, my graduation picture. My nephew said to me, “You’re a true survivor!” Hahaha He was cute and made me laugh with his remark. Oh well, there were a million stories like that after Katrina.

Mom only had the clothes on her back, the small suitcase for the evacuation she had packed and her purse when she moved in with us. I was amazed at the kindness of others.

When I was able to take mom shopping to replace her wardrobe the store manager would not let me pay for them. She told mom it was free!

I will never forget the kindness of my friend, everyone in Houston, back home. Some people did pull together and others acted like animals.

Every junkie went nuts in our streets not being able to get their fix. My friend who is in the National Guard was stationed in the super dome and said he actually had PTSD afterwards because he said they were withdrawing from drugs, fighting each other, stealing from businesses, not talking about people who stole diapers and baby formula because they had to. I’m talking about the people who were stealing televisions and that sort of thing. Just disgusting! So yeah, in some cases it’s best to evacuate.
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Cecicando Aug 2019
I know you mean well, but? Everyone was coming to our area to "evacuate! " We were supposed to only get bad weather! We experience bad weather at least once or twice a week, our house went through a category 3 hurricane with no problems! We lost one tree and some cap shingles that's it!. I set up our generators we had hot meals, air conditioning at night and running water. Look up Deltex houses, not one has been lost in 50 years of businesses. The first floor of our home that sits back into the hill is a shelter! Black Island was 5 miles away from where Hurricane Michael made land fall. The island took a beating but every one of the 12 Deltex round houses were intact. Do you honestly think that we would have stayed if I knew that we could have been hit by Michael? The storm turned at the very last minute, I can not predict the weather and we do live in Florida, that said, I can not move my mother every time there is bad weather. My parents built this house for a reason, this is not our first rodeo... I am sorry, but this is the same argument I get from my brother and sister, again we were in the area where Panama City and surrounding towns were evacuating to. My youngest sister lives 20 minutes away and she stayed. I stand by my decision to stay!
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Ceci,

Oh sorry, I misread it. I thought you wanted to evacuate when you were talking about a hotel room. Some people just like to get away during the storm and look at it as a vacation. It’s about doing what is best for your personal situation. We have to consider different things, the elderly, our pets and so forth. My little schnauzer was always a pain to travel with. She was a nervous Nellie in the car. My greyhound did fine in the car but he was such a big dog. He was 85 pounds. I had to board him because I didn’t think the hotel would want a large dog. Funny thing is though, he was more laid back than my little one.

Same here in Louisiana. Many, many times people were able and are able to stay home or as some say, vertical evacuation, just go to an upstairs location if flooding is a concern. Like I said, Katrina was a unique situation, a different kind of storm. Our levees broke and so much of the city had horrible flooding. That was a mandatory evacuation.

I am so glad that your area is okay. Generators are so helpful too. My daddy grew up in Panama City Beach. I went every summer as a kid. I love it.

I wasn’t accusing you of putting your mom in danger. Of course, I understand that you know what is best. I have crappy brothers too. I get that as well.

Sorry if I misunderstood your post. I have been stressed out lately and I misread it.

So happy that you are in a safe spot. Florida, Mississippi, Alabama and Louisiana have all taken their hits from the hurricanes. I’m thrilled you aren’t in a vulnerable location.
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You got this. You know what's best for your mom and you are following dr. order. I hope you get back ever cent you have to spend to protect your mom. Sheltering in place sometimes IS the best thing to do. I lived in Florida for years and the worst for me was Ivan. But both my house and I did fine. You are right on what moving your mom during a storm (most of all cause more dementia) is abuse. Good for you on sticking to what you know is best for your mom.
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Cecicando Aug 2019
Thank you!
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Why not ask siblings to visit for at least one week to "help" mom while you take a small vacation? Maybe then they will get a clearer picture of mom's state of mind.
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Cecicando Aug 2019
They have done that! This is about control, I have it they want it. This is what breaks my heart, they are selfish and self centered, this is not about her welfare. I asked my middle sister how do we make them love mother? It's so sad and insane!
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Typical - siblings who have no idea- interfering without wanting to check facts first! Frustrating isn’t it?-Especially when you are trying to do your best for your mum.

Just a thought, but your doctor may be able to provide a written report to counter your siblings views. Plus have you considered informing them of all the time it takes from you? Do a diary for a month and put everything in it. It will sound depressing when written like that but may be one way to let them realise what is really involved in caring for your mum in the way she wants. Not what they think she wants, based on a few, limited visits a year, which doesn’t sound suitable for your mums disease/ needs.

Her doctor may also be able to vouch for the way you are handing her affairs and managing her needs.

Personally your siblings need a kick up the bum for putting you through this at such a time. And sedating your mum?! What do they think she is - no way to treat a lady that’s their mum- besides that puts her at increased risk of falls due to sedation and can induce further confusion. How much longer before they just want to palm her off to a nursing home to visit instead?!

Keep up the good fight and thank you on behalf of your mum. Let us know how it goes.
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Cece55 Aug 2019
Good reply. My Mom can get up for a weekend or holiday visit and appear to be pretty with it. But if you stay with her for a full week you begin the see the issues she has with memory self care eating etc. She can fool you for awhile but the ones who visit and do the least always want to run the show. Of course they know best. I see it all the time
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Bring a Good lawyer, You have good Case..Shame on them all...
I admit Mom should be Looked after and it seems you are doing this Job, Living NEARER.
As long as mom is Not a Risk to Herself, Keep it Going and Flowing, angel.
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Cecicando Aug 2019
Thank you so much!
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Good doctor, good lawyer, good friends and neighbors - all of them can help tell the others that she is OK and better left with you. If they take you to court, let them bear the cost.
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Cecicando Aug 2019
Thank you!
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I hope you will continue to speak on your mother's behalf. Understanding dementia is hard and convincing others that what you are doing is for her. It is very hard to get used to the fact "the brain isn't functioning and responding logically anymore" and changes are terrifying for them.
I moved my husband for what was to be temporarily and not understanding his dementia. His doctors all gave the okay. He was in the the hospital the very next day and went downhill from there. "It was scarey!" He was hospitalized 3 times, went through several bad months, then went from the last 2 week hospital stay to a home that specializes in allowing him the life style, activities and medical assistance he needs. I feel fortunate all has turned out well for now and he is happy. But the move definitly took its toll on everyone.
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Cecicando Aug 2019
Bless you for understanding, this exactly what I am trying to prevent. Thank you for sharing and I am so happy it turned out well for both of you. Mom's doctor is absolutely against moving her unless it is a dire emergency, then he will step in to make sure it goes as smooth as possible but we have not reached that point yet. All of my siblings are on mothers doctor's list of contacts, at anytime they can ask him for any information, have they they done this in 9 years? Hell no!! This is one of the things I have asked them to do.
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Ostriches don't always live in Africa - if they won't educate themselves then you can't do anything about it - ask dr to put it writing & send copies to sibs - if they proceed inform them that they will bear the court & lawyer fees when they loose for both sides - that letter will show it is not you making the decision but medical advice
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Cecicando Aug 2019
Honey we are way passed that! I am waiting for the trial now. Trust me I am ready. Thank you for answer.
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Cecicando, I hope that your attorney asks for compensation for undue distress caused by their actions and a restraining order to stop them from continuing to harass you after they lose.

I would tell my attorney that I want it to kick their butts so hard it creates precedent.

I am sorry that you are having to fight their control issues while caring for your mom. Some siblings aren't worth the powder to blow them up. Lucky you, you got 2 of them 🤯.

You will prevail, her doctor will be the winning witness. Be sure and keep him/her informed and make sure that they are willing to testify. I have heard of some that won't. Believing that they will happily protect your mom.

Well done for caring enough to do the hard job and fight the hard battles. Great big hug!
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Cecicando Aug 2019
Thank you so much, I am humbled by the support from this website and the wonderful people on it. It gives me hope and it cheers me on.
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It sounds as though you need to apply for POA and for the two applications to be heard together. Get letter from her Dr in support of what he believes. One can completely understand Mum wanting to stay where she is, I totally fail to understand why brother thinks she would be better moving - is his wise trained in elder care nursing, or are the hurricanes less likely to attack his house. Perhaps next time he comes to see you you could take him to a memory care home where the people are in a later stage of dementia - maybe seeing the disease would help him understand. You have all my sympathy on this because there just seems no point to it and no advantage to anyone especially your Mum. I can only suggest you go on Amazon and buy each of brother and sister a copy of the book "dementia the one stopguide" or something similar. Or maybe your Dr has some guides available.
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disgustedtoo Aug 2019
OPs description of the issue includes:

"I have been taking care of mom for 9 years, the last 5 with POA."

The secondary issue is that the siblings could apply for guardianship, which would override POA.

Courts do not grant POAs, only guardianship/stewardship. POAs have to be assigned by the person who needs it, generally through an attorney and before they are too far down the dementia road. Sounds like mom might still be able to agree to POA, but again, OP already has that and the siblings are going to court, so they are attempting to get guardianship.
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As someone else said, there are "stayers" and "leavers". Nothing to say that one cannot transform into another, at some point in the progression of the condition!

Our mother was becoming a "stayer", but I did have concerns about that changing. How dementia affects the brain and thought processes does change over time! Mom refused to move in with anyone and absolutely wanted nothing to do with a facility (AL/MC not NH), even though before dementia it was part of her "plan." The first 9 months she hounded my YB to take her back to her condo. Then she forgot the condo and focused on the previous residence! Additionally, a UTI can throw a spanner in the works! She got one and was adamant that she needed to get out and go to that older home, because she had guests coming! YB initially insisted she would prefer just AL, but because he had no clue how dementia works, this would NOT have been a good idea. When I said there is no one to stop her walking out the front door, his reply was 'she doesn't do that now.' No blunderboy, because she is becoming self-isolated in her place. This would NOT be her "place" and she would probably wander off looking for her "place" (so many time she told staff she was going to walk to her place, my place, her mother's place, clearly she WOULD have become a "leaver!")

As for the two siblings understanding - not likely they will. As someone else called them - ostriches! Too many family members do NOT experience the whole scenario and have no clue what it entails. You say mom is in early dementia, and too often they can muster up enough to appear mostly "ok." That WILL change.

Neither of my brothers understood anything much about dementia. When I tried to provide information, I was called a know-it-all. Due to "sticker shock" at the first place we checked out, they both said "for that kind of money, I will take her in!" Neither did. OB isn't local and the last time he was up to help with condo, he visited once without me and refused to go again, as he "didn't know what to do with her." THIS from someone who was going to move her 2 days away and care for her himself?????

As for educating them - you can try. Have the doctor send something, have flyers sent to them, add them to email listing for dementia sites, etc (they probably won't appreciate that and will likely just ignore/unsubscribe.) You say they have visited and cared for her, but since you indicate she is only in the early stages, it is hard for the ignorant to understand where this all leads to. In their eyes, mom might just be a tad forgetful or whatever. I don't think either brother saw past that initial stage (I had started reading up on it myself, to know what to expect.) We can only provide the information, we can't make them read it, understand it or accept it.

Although it is sad that you have had to shell out your $ for fighting them, your attorney could petition the court to have them reimburse you when they lose their case! Typically the person's assets are used to pay all the court costs, but this may be different, if they are suing you. I would discuss all that with your attorney. I would also, if he thinks you have a good case (most likely you will, there is no abuse, mom is being cared for and her wishes are being honored by you), perhaps someone could "enlighten" the two clowns that they will likely have to pay for their "parade." They should also be warned that the court could appoint a 3rd party guardian, removing all decision making/control from all of you!

Wishful thinking that we had a magic wand or magic words that could enlighten all the people in the world, in this and all situations!
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Cecicando Aug 2019
You are so right, mother was diagnosed with early onset dementia, this will be her 9th year with the disease. I, like you keep up on all the new treatments and info out there, I do a lot of reading. Mother is on two heavy duty medications for dementia as well as antidepressants, two blood pressure meds, bladder control and bowel control problems, cholesterol and two shots of Prolia for osteoporosis per year, I give her a B12 shot for anemia once a month. Which is really hard for me because I have a fear of needles!!! I also have a weak stomach, when I have to clean up her accidents. You are so right, both of my siblings have no idea what I do and like you I don't think they care, this is what makes me sad. I worry about the out come of this trial and you are so right the courts could take mom away from all of us. I am living a fricking nightmare, I am so thankful for my sister Becky, she lives in Alaska but she totally understand what I am going through, without her help and support I wouldn't be able to do this. In Florida you can not use any money's or assets of the person you have POA over, this is my personal money so yes I am counter suing. Thank you for suggestions.
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Get her doctor to put it in writing about the effect a move would be. If you can't get the horse to the water, bring the trough to them. Or arrange a conference call with dr and siblings and ask him to explain what he told you.
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Cecicando Aug 2019
Thank you, I have a beautiful letter from mom's doctor and he is willing to do an affidavit if needed. I have never missed an appointment in 9yrs and mom is clean, well groomed and happy. I have neighbors and friends of mothers who have offered to come to the courthouse with us and two have written letters, I've that covered, thank you.
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Put her Alzheimer's in writing from her physician and give it to the siblings.
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Any update about the circus Cecicando? Have they proceeded
with the court nonsense or backed off?

I used to ask at work, when do the elephants arrive... when I would get the perplexed looks, I would then state 'the clowns are already here!' Your clowns are there... hopefully the elephants never arrive!
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