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Mom is newly dx'd "unspecified dementia." Dx'd by the gerontologist in the trauma center where she was admitted after her accident. The dx is actually without behavioral disturbance. Which I find odd since her nurses had to keep her in the Geri chair by the desk because she kept trying to get out of bed with a broken ankle and would not comply. Also, I ended up having to take her cell phone from her because, apart from her calling people at 1,2, 3 in the morning saying she was being held prisoner, come get her, she was trying to call taxis. She's now in SubAcute care. Her first day there, within 20 minutes she was completely naked in her room, standing up. Within 2 hours she was moved to the memory care unit because she was screaming racial slurs at her care team. Within 2 hours of being on memory care unit, they moved her back to the SubAcute because her racial slurs continued, and they were concerned for HER safety on that unit. Her behavior was better yesterday, but she is begging to be taken back home to her (speaking her address) and wants her cell back. We've been telling her something is wrong with it. We suspended her network account because why pay for something that she's not using, and if she gets this phone back, we don't want her making calls to us in the wee hours or trying to call a taxi. Unfortunately, she'd still be able to 911. But I was wondering if her at least being able to access Facebook would be okay. She said she just wants to call people to say hi. Mom has NEVER been to just call people to just say, "hi." In fact, as her cognitive abilities declined, she socialized in all ways, much less, except Facebook. She wouldn't answer her phone if you called. She never called anyone. We think she might be trying to guilt trip us into giving her the phone so she can call a taxi. But we aren't sure. I've read a few articles that say that those living with dementia SHOULD have their cell phone. I really don't know what to do at this point. Any advice is appreciated.

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Clearly you aren’t comfortable about taking the phone away – or about leaving it with her. How about you do a trial run? Even an hour or so, or between visits. If it’s not being used appropriately, you find it needs to be fixed again and remove it.
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Can she access a wifi network? Potentially an “in-between” solution might be removing the phone’s SIM card. Then she could browse, email and use Facebook without the ability to make calls. Like using an iPad or tablet.
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I think you should consider the pros and cons and then decide. There can be an inbetween arrangement too.

It is good in general to have the elderly with dementia able to keep busy with activities they want to do and will do. So being on her facebook could be a good thing perhaps.

If the main goal is to get her back on facebook, then maybe give the phone back but with cell service disconnected? Assuming there is wifi in the facility, she can connect to facebook , websites, email, but with cell plan disconnected will not be able to call people.

for phone calls - if she is in memory unit, I assume its locked? So even if she called a taxi, they would not just let her walk out? something to consider.

Technically, the legal situation might dictate officially what can be done?. Is she considered still competent to make her own decisions? Do you have any official role, whether POA, or guardian? If she is considered competent, could one consider that its in a way her right to be in touch with people outside by phone etc? I dont know the official answer, but something to think about. on the flip side, if you have guardianship, then its your decision.....
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BlueEyedGirl94 Jun 21, 2024
@strugglinson - one point - yes even when they are still competent there are ways you can kind of get around this if there are enough issues with the phone. When the SNF called us to let us know that FIL's phone had been responsible for 911 calls we were not happy, but then to find out that he was giving it to other residents who were calling - it just raised the problem significantly.

What we did was tell him there was something wrong with his phone and we had to take it to get it fixed. This wasn't hard because he had already tried to call "0" and find his internet browser to find the customer service number for his cell carrier - because he didn't want to admit to us that he had messed his phone up again (first) and then when he did and weren't going to be back up there for a number of days to fix it (second). So we just ran with the "we need to get your phone fixed" line and took it out of the facility. Any time he asked about it we just told him they were still working on it.

He at that time was still considered legally competent. But his ability to actually manage his phone was completely gone and it was causing more problems for everyone than it was worth.
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I wouldn’t. And keep in mind that ANY phone will work for 911. Even if it’s not on any phone carrier (AT&T, T-Mobile, etc). It’s not uncommon for demented elders to call 911… be it accidental, or thinking they need to call 911 for help to the bathroom or that they’ve been kidnapped!

Also, the phone can easily lead to scams. The “you’ve won a prize, we just need $100 for fees” or “your daughter’s been in a bad accident and she needs $500 right now to get treated at the hospital!”. Those scumbags are relentless!
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NO.

We let my FIL take his cell phone to the SNF with him - we too were told it was good for him to have it, to be able to interact with others, etc.

It became a nightmare. He managed to delete all of his contacts (with no backup) within the first few days. That was a blessing - because something he did about once a month - going through all of his contacts to say hello - became a DAILY thing - all day and all night. I literally mean he had contacts in his phone like the realtor that had looked at his house once, a loan officer, people who frequented a restaurant he hadn't been to in years - and my personal favorite - the man who rear-ended him several years earlier. He was calling them all - so deleting the contacts list - God send!

TECH SUPPORT - what we could easily help him with at home- not so easy from an hour away. And we couldn't expect the staff to spend time working on his phone when he accidentally deleted apps etc. So I took the phone one day and hid everything except what he actually used, locked icons down so they couldn't be deleted, and forced the volume to stay up - unless he dug into settings - which he had to go about in a different way because I even hid the settings. He liked to "play" with the phone and would regularly manage to undo what I had done - mute the volume, log out of Facebook, etc and call me 10-15 times a day at work asking me how to fix it.

He would hand over his phone to residents who didn't have phones - how to win friends and influence people. And they would call 911. Fun fact - any time 911 is called from a SNF - they have to respond. Every single time.

It just got to be too much - he would not plug it in - forgetting or not be able to do actually do it- and it would go dead and we wouldn't be able to get in touch with him. He would call screaming into the phone that we had to help him, he was being held hostage.

We finally got to the point where we had to let the SNF do their jobs. If there was an emergency - they would let us know. He just wasn't able to use the phone properly any longer.

If she can't use it properly , she shouldn't have it. It will just cause you and others more problems.
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She needs to be fully examined and diagnosed as to the cause of her mental decline. With that, decisions about where and how she lives can be made. Right now, it seems to be reactive rather than having a care plan in place.
My mother had significant dementia along with many medical conditions and she was also deaf. We communicated by texting when apart. She also had a Facebook account. When she became abusive with FB, I closed her account. I eventually took her iPad saying it needed updating and I never gave it back, Whenever she asked for it I told her it was being repaired.
Don’t give her a phone if she’s unable to properly use it.
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No way, she does not need the phone, we had to take our step-mothers away as she was calling us constantly.

We told her that the phone was broken and that we were not replacing it, she accepted the answer.
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No. Most assuredly no. She can have the phone back when she is well enough to have the phone. She should be told that she is having behavioral issues and problems that no one can explain and she is having testing and that right now she is not able to use her cell phone.
That simple. Answer is no. You yourself acknowledge that she is not better. So this should be fairly clear. I am so very sorry for all this and hoping you get some sort of definitive diagnosis.

Do I understand that before her accident your mother was actually well and without mental deficits?
She was capable of properly using a cell phone? She is clear of any UTI from any catheters that may have been places? Did she have anesthesia to set an ankle? Did she have a blow to her head? Are MRI scans done? This sudden change makes me think there is something other than dementia involved here. This is just too sudden.

I sure wish you luck. I would say, however, that a cell phone is out of the question, and the least of the problem. She is simply seeing that as some means of escape at this point, I fear.
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Giving her old phone back will cause more trouble and create more problems for you. Unless she can learn to use a restricted phone as another post has suggested, no phone.
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Was Mom screened for delerium?

Dementia is not sudden onset.
Delerium is.

"kept trying to get out of bed with a broken ankle and would not comply"

How recent was this accident & broken ankle? Fractures can cause delerium.

Wanting to leave, call a taxi etc is very typical delerium behaviour btw.

I don't know what your Mom was like before the fracture. Did the Geri Doc in the Trauma Centre?

Were you aware of a dementia dx or dementia-like behaviour before her accident? (Doctors are trained, yes, but you know her much better than a Doctor she just met).

But to answer your question.. if cannot use the phone approproately. No.

PS IF this WAS delerium & it passes, that is very different.
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mommabeans Jun 21, 2024
Mom has been declining and we've been begging her to go back to her doctor and talk to them about her "memory issues." She's had trouble recalling new info, learning new things, her memory can't be jogged either. If she doesn't remember it, it didn't happen. Period. She's been having trouble following conversations, managing her money all gradually getting worse, could NOT be reasoned with about any of this, ...but she stopped seeing her doctor and absolutely refused to go back, PARTICULARLY if anyone said they'd go with her. I think they may have mentioned something they FINALLY noticed, she reached a point that she couldn't even showtime for her doctor, so in her failing brain, she figured no diagnosis means she doesn't have it. We all knew the dx was coming. We were just hoping it would have been under better circumstances. She lived alone, didn't like visitors, didn't want to talk to anyone, just wanted to be left alone to practice her daily routine the way she wanted. I'm thankful that the diagnosis didn't come with a worse situation than what did happen, but what did happen was bad too. We tried so hard to prevent it. She just would not budge. And seeing how she's behaving now, I think if we'd try to force her, that would have ended badly too and she'd have no one on her side right now.
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Easy: no.

In my experience, loss of ability to manage or appropriately use their phone/the internet was an early symptom of their dementia. Just what you described: calling people at all hours, calling 911 for no reason, messing up their contacts, being easy targets for scammers... none of those LOs "got better" at using their phones or navigating the internet appropriately.

I recently replaced my Mom's broken flip phone with a Raz Mobility phone. It looks like an iPhone, but is 100% controlled by the caregiver through an app. I populated her phone with contacts who want her to call them (immediate family, grandkids, a certain neighbor) and the button to call is a large picture of that person. I can disable the keyboard so she can't call unapproved numbers. She can only receive calls from approved contacts. 911 calls go through my phone. My Mom has a tendency to forget how to use the appliances in her home, believes they are broken and procedes to call and torture their Customer Service people so I put an end to that. She has been able to adapt to this phone and gives her a sense of security BUT she does not have the problems your Mom is having. She lives next door to me so managing her phone issues is easier than for other caregivers.

Do not get your Mom a phone until she is 100% stable. Even then, it may just be something she has for a day and then loses or breaks it.
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