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Overwhelmed23 Asked June 2023

Should a dementia patient keep cell phone if some callers agitate her?

My MIL just went into Assisted Living (had been living alone with a lot of help from us). She has moderate dementia and a lot of physical problems, falls often. She gets very difficult and paranoid with us, is very illogical and doesn't reason well.


We left her with her cell phone at AL, thinking it would be good not only to let her reach us and vice versa, but good for her to know she can still talk to the few people she calls several times a month or week. She doesn’t have a phone in the room otherwise.


However, I’ve been wondering if we should remove that cell phone or cancel service. She calls a couple of friends/relatives, one of whom we know for sure gets her agitated in various ways. MIL made claims no one is taking care of her, we’re out to get her, we’re “controlling” her money (as told to us by this SIL, who isn't here to see what's going on and believes everything MIL says). That was before she was in AL; now that she’s in, she begs to be taken home, says we’re stealing her money. I'm sure she says the same to the people she calls. The only one we're also in touch with is SIL, so no idea to what degree the others believe MIL.


This SIL has believed even the most ridiculous stuff and won’t listen to what we say. This even though she doesn’t come to visit, and in fact let’s MIL think she and her husband will visit her or that she can visit them, then tells us privately that her husband has washed his hands of his mom and doesn’t want to see her – but she continues to let MIL think otherwise and make offers she can’t/won’t keep. So SIL basically reinforces with MIL not to trust us and that we are awful.


MIL has just been in AL a little over a week. We need her to calm down and settle in; I’m sure these phone calls she makes/receives just work her up more against us and reinforce the feeling that she’s been done wrong by being in AL. I can check her phone records online and see her incoming/outgoing calls, so I know she’s been back at wildly calling a few people – including the one we know for sure gets her highly agitated against us and about her situation in general. The other folks she calls may do the same, we just don’t know.


I hate to take her phone away, as I’m sure it’s comfort for her to call these people. But it also puts her in a worse state of mind, from what we can tell. When she gets highly agitated and accusatory, I’ll check her phone records and often can see she just got off the phone with SIL.


We also want to be able to easily reach her to see how she’s doing, and to communicate details about doctor visits. She still needs to see specialists, most of which we’ll be getting her to or at least scheduling and letting her know the facility will be taking her to. It’s all easier if she has her own phone, I think. Otherwise, I guess we have to relay it to someone at the facility, then call them back to make sure they actually told her. We haven't been to visit her yet due to advice that it's best to let her settle a couple of weeks, to hang back.


The possibility of getting her to settle down about us and about living in AL, which already isn’t good, is worse if she calls SIL (and probably the others). Also worried she’ll start calling agencies/police to “report” us. It is all things that can be sorted out, but we really don’t need even more stress and crap to sort out with her. Before she moved to AL, she had called the police on my husband because he told her he’d be late with her groceries (the store had sent us a notice they were not ready and it would be delayed up to two hours). She called 911 again when her home phone was acting up and she thought my husband was doing something to her landline (her service provider was having intermittent outages that day).


 


Should we take the cell phone away? What are some options?

NeedHelpWithMom Jun 2023
Overwhelmed, I don’t think that you will have to wrestle with her to take the phone away.

Your idea of letting the time run out is good. You could also try telling her that her phone is having technical difficulties.

You’ll have to play it by ear for now. Wishing you and your mom all the best.

Fawnby Jun 2023
Can you quietly ask the people who concern you to block her? Or block them on her phone? They probably don’t enjoy talking with her anymore anyway.

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Overwhelmed23 Jun 2023
We've decided to leave her with the phone for now, but to monitor the situation. It's hard to tell exactly how much those calls rile her up without knowing what's said, though.

We can go in and take it if we have to, or just let the airtime run out (it's a prepaid phone). But it's got enough time for a while, and doesn't have to be topped up again until September. But if she starts making wild calls to 911 to report she's been taken hostage at AL or something like that, we'll have to take that phone. Hopefully she won't do that.

NeedHelpWithMom Jun 2023
My mom got to where she couldn’t use her phone. It annoyed her and she became frustrated. We felt it was best to remove the phone. She didn’t miss it. I think she was relieved not to have it.

Do a trial run without the phone. See how she does. If the phone is causing her stress, I don’t see the point in allowing her to keep it.

JoAnn29 Jun 2023
First, she needs to be in Memory Care with meds for anxiety.

If it was me, I would lose the phone. Its not good for her to have one at this point. Others may not agree with me about the phone but you are suffering because the SIL relays all this to you and believes everything MIL says because she doesn't understand Dementia or she refuses to. I think MIL needs to get use to where she is and for now the phone needs to go. Turn off the service and when she complains the phone does not work, tell her u will take it to get it fixed. When she asks were it is, tell her it could not be fixed. Hopefully her short-term is such she forgets about the phone. Tell the RN or administrator that you have taken the phone. My DD says when a phone becomes missing at her NH, a report needs to be made and the phone looked for. Only to find that the family took it with them.
Overwhelmed23 Jun 2023
Thanks, all good advice. She's not at the point she would forget having that phone, and she will feel lost and alone, I think. She seems to remember a lot, though at times gets fuzzy on the passing of time (what day is it? Thinking she's waited forever for someone who actually came when they said they would). Sometimes not sure if she took her meds, that sort of thing. BUT those are hazy periods, she is not like that all the time. She'll seem ok for a couple weeks, maybe a little longer, then boom, fuzzy and foggy or angry and accusatory hits. Or thinking someone broke in and moved things, or that some health problem she has was caused by some odd, unrelated thing that makes no sense.

We're going to keep an eye on it. When the time comes to remove it, I like the idea of shutting it off or letting it run out of airtime, and telling her to give it to us to get it fixed, then saying it can't be.
southernwave Jun 2023
Well, I mean you can always take it away for 2 weeks until she settles in and then you can decide if she can have it back.

In other words, whatever you choose to do doesn’t have to be a permanent solution.
Overwhelmed23 Jun 2023
Ugh, I just imagine going in and wresting the phone from her hands! It would be an awful scene. She refuses to leave her room, won't go down for meals or activities, so it would be hard to sneak it out, and freak her out if we did so without her knowledge. We could perhaps coordinate with staff a time to go in and get it.

I know she would be so upset and feel hopeless if we just came and took her phone, she probably already feels that way. I'm having such guilt and regret about putting her in AL, but with all her problems plus her being unwilling to discuss AL or other options for help for her (besides only us), and paranoid of us to boot, we were in a bind. I just hate this whole situation, I want so badly for her to be back in her apartment, but to be willing to let us get health aids in, and manage her meds, and for her to wear her medic alert necklace, and to stop accusing us of vague, sinister things all the time. But we can't have that, she can't stop doing that.
AlvaDeer Jun 2023
I think only YOU can make this difficult decision.
It sounds to me as though MIL is coming close to the time when ALF won't be enough and she will need MC. It is more rare to have phones there, and usually the staff helps residents make calls when they need to with the community phone.

If a phone is causing more distress than happiness to MIL I feel it is time to get rid of it and communicate with visits, with calls to those who WILL visit, with writing down appointment information on a board in the room, and with making calls helped by the staff.

At my bro's facility there were several residents without a phone in the room or a cell phone, and they were assisted with calls.

Just not certain which is the best move here, so afraid I am as flummoxed as you are as to what to do.

Overwhelmed23 Jun 2023
We do have dpoa. She is not at a stage to forget she had a phone and that we took it away, it will be upsetting to her. This whole thing has been upsetting to her - she didn't know we were putting her in AL, we moved her there directly from rehab after a surgery. She had refused to talk to as about AL or other measures for a year, we didn't know what else to do. But it was a terrible shock to her, as it would be to anybody, and my heart breaks for her.

I want her to be able to call friends, and us (unless it continues to only ever be begging to go home), and I want us to be able to reach her. But I fear it affects her mental state and may make more problems for us to have to deal with. I suspect SIL in her ear this whole time made things worse in every way, though they still would've been bad, I'm sure.

MeDolly Jun 2023
My stepmother is in MC, she had a phone landline & cell while in AL, we had to remove them as she kept calling us asking us "Did you call me", endlessly day & night.

When we moved her to MC that ended the phone deal, if we want to TT her we call the MC Admin and she is put on the phone. She never calls us anymore, this is good.

Some call 911 all the time, my friends mother did this, claiming that the people in the home were beating her. Goodbye cell phone or goodbye mother, the home was going to evict her, all is calm now.

Neither of the above do not even remember that they had a phone.

Your SIL is a troublemaker, hope that you have a DPOA for MIL.
southernwave Jun 2023
Oh, wow, my mil does that too… calls us to ask us if we called her. I thought it was just an excuse to call.

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