Phone calls. Lots and lots of phone calls.

secondcor521

Hi all.

My 87yo Dad has mid-stage Alzheimer's/vascular dementia. Solidly stage 5 on the Reisberg scale. He's in a well-regarded and decent AL facility.

He suffers from boredom, and also has memory loss and confusion. This produces some low level anxiety. This, in turn, seems to result in phone calls to me. 14 phone calls today in the last nine hours.

There are more phone calls when there is something on his calendar. Today, for example, I put on his calendar that I'm returning from a trip. So he'll call to tell me that it's Saturday, and he's confused, but he's got a note that I'm returning from a trip.

The low level anxiety seems to be from being confused and a general feeling that he's expected or supposed to be doing something about whatever it is. For example, he might think that he needs to make sure I get picked up at the airport when I return to town.

I first started trying to respond by affirming the facts: Yes, I'm on a trip and I'll be back in town tonight, no need to arrange transportation I've got that covered.

Lately I've tried affirming the confusion and anxiety and reassuring: Yes, I understand you're confused and anxious. You're safe and taken care of, and you don't need to worry about taking care of me; I'm OK and can take care of myself (and you).

Periodically and especially in the early morning (he wakes up about three hours before I typically do), I've put my phone on do not disturb, but it will still ring through if someone calls twice in 15 minutes.

I also am just finishing my first respite trip today. About 10 days off, covered by my sister, after about 9 months of being on call. I'm going to continue those, but that is perhaps a separate topic.

Today he explained for the first time that the phone calls with me help with his anxiety. If they do, they only help for a little while; or it would be far worse if he didn't call me, which would seem to be an awful situation to be in.

Anyway, any general suggestions for either (a) how to reduce the frequency of the phone calls, and/or (b) how to address whatever need he has better?

Thanks!

M1

Hi. Not necessarily what you want to hear, but perhaps it's time to take away the phone? There's probably nothing short of that that is going to solve the problem. Could be the phone is causing anxiety at this point.

secondcor521

https://alzconnected.org/discussion/comment/191049#Comment_191049

I'm very hesitant to do so for several reasons.

First is emergencies. I guess that could be covered by his pendant button.

Second is he also uses the phone to call his girlfriend, who is one of the main things that keeps him interested in continuing living. She is priority #1 on his call list, so he probably calls her even more often. But she's his girlfriend and also has some dementia, so she is more patient with, and less bothered by, the calls.

Third is that is his main contact with my out of town siblings, who call regularly. As well as some other family members and friends who call occasionally.

But I will noodle on the suggestion more and may run it by the family and the AL facility; thank you for it.

Quilting brings calm

You do not have answer every call. The AL will call you if you are needed. So let some of the calls that ‘ring through’ go to messages. You can choose to listen to the message immediately or not. Will this always work? No, sometimes he will just keep calling. When you do talk to him, tell him you will call him tomorrow.

I suggest that you stop telling him when you are going to be out of town and that you definitely don’t write it on his calendar. As you commented, seeing it on his calendar triggers anxiety in him. I don’t always tell my parents my location- I do tell the AL staff so that they know whether I am local or not. When I call my parents, they don’t realize I’m on vacation as long as I find a quiet area to call them from.

mention his repeated calls to the staff, along with any pattern to them( day, time, after or before an activity). See if they will work on redirecting him into doing something else at about that time of day.

Marta

Have you considered medication for his anxiety? It would be a kindness if he (and you) could get some relief.

terei

Is his phone set to call you by pressing one button? If it is, disable it. If he questions why it s not working, tell him it must be broken + you’ll take care of it. Repeat, repeat, repeat + ultimately, the phone ‘can’t be fixed’. Also, how often is he calling his girlfriend? She might need some relief also. One or two calls FROM you a day, at your convenience, is more than enough to keep track of him. If there is an emergency, you’ll be called.

Medication may relieve his anxiety.

ButterflyWings

Is it possibly time for him to move from AL to MC? It sounds like he has a lot of time on his hands and maybe this is not the right level placement for him any more? If MC will provide more activities and proactive plans for his schedule, he may need that prompting now.

I definitely agree that putting things on his calendar sounds like it needs to stop as it is causing anxiety and confusion.

forbarbara

Phone-bombing seems to be a pretty common symptom for PWD. I was surprised how many people were getting multiple calls daily from my MIL. They only told me after her dementia became more obvious. (I was the lucky recipient of only one or two calls a day - around 3 am!)

I agree with others that it’s time to disappear the phone. Fiblets should help. Good luck with this.

M5M

Or could you let his calls go to voice mail, where you could insert a new, pleasant message….”hi, Dad, I can’t answer the phone right now. This message is to let you know I’m OK and will call you as soon as I’m available?” Or would a voice mail confuse him.?

GothicGremlin

I agree with the others who said that it might be time to make the phone disappear. Phones can be stressful things. My sister's personal best was a record 31 calls in one day. 31. Go Peggy! I was on to her though and turned on "do not disturb" on my phone.

Still, the phone was causing her such stress, I told her that it was broken and had to be taken to the Apple store for repairs. She never saw that phone again.

I know what you mean about a phone being necessary to have contact with others. I had this realization too, so I cleaned up Peggy's phone, got rid of all email, texting, and social media so that all was left was the actual phone. I put a different case over it, and I gave it to memory care staff to hold. When a friend wants to talk to her, they call the memory care front desk, and then memory care staff calls the friend back using Peggy's phone. It's kind of complicated, but it's worked out well for almost a year now.

I'm getting ready to take away the phone for good now because she is completely baffled by the phone, even if someone is helping her with it.

But maybe you can do something like what I did? It might work for awhile.

housefinch

What @ButterflyWings said. He may be signaling with this behavior that he is not receiving sufficient support/scaffolding in assisted living. It would be interesting to see if, in memory care, with no anxiety medication, he was calmer and happier. And with no phone or pendant. I wonder if someone making those calls is past the point of knowing when/how/why to use a pendant?

dancsfo

I agree with the points made by others, but I also want to consider a different point of view:

1) while getting many calls may be disruptive (especially at work, or when you are busy), but ...

2) one may long for the days when it is possible to talk on the phone with a PWD and have any conversation. A day may come when he is unable to use a telephone without help or even carry out a meaningful conversation.

3) There may be anxiety, but since he's your dad, maybe he's trying to "help" or "take care" of you, even while confused. (i.e. the example of when you need to be picked up at the airport)

Regarding getting lots of calls and avoiding them, such as your phone ringing when "do not disturb" focus setting is on, if called twice within a few minutes, if you have an iPhone, one can create a custom "Focus" (i.e. setting separate from the built-in ones, that you can set as "No early calls from Dad") that you may try, but still allow emergency contacts through (i.e. doctor, AL contact, etc.) You can try that for early mornings, for example. Similar settings exist for an Android phone. You need to be careful to avoid having other people screened out, and to not forget turning that setting off.

https://support.apple.com/en-nz/guide/iphone/iph21d43af5b/ios

JazzyJ5

I would not take away the phone. That’s his only means of contact and communication. I think that’s a little harsh. I think some posts have great insightful comments, read those and I believe you will find your answer. 🙏👍

Emily 123

Hi,

It sounds like seeing notes on the calender makes him think he's responsible for something and that makes him anxious.

Because he can't recall what the event means for him, and he can't recall any of your phone conversations, he's going to call you each and every time the annotation catches his eye.

Since the PWD can lose awareness of time passage, they can become anxious if they think they have an upcoming event. Make sure to put specific times for his activities (walk at 3:30). Don't put open-ended annotations ('Joe returns'). If this still causes him anxiety, then don't place annotations on the calendar. Sometimes caregivers may not even let their person know about upcoming things because they get too focused about preparing for them over and over.

harshedbuzz

@secondcor521

It sounds like dad has some significant anxiety and has lost the cognition to process it.

A multifaceted approach may be needed. It sounds like the calendar is more of a trigger than scaffold for him rather than a tool you planned to orient him. PWD lose their orientation to time. I'll assume he can still decode the note, but her probably can't recall the context and will have forgotten what it said within moments of reading. This is why the repeated phone calls- his memory is shot.

There comes a time when accommodations and tech can no longer replace human prompting. It sounds like you dad is on the verge of that. I'd be looking for the next level of care as you'll likely need it soon.

If you aren't ready to remove the phone, consider getting a burner just for his calls. Put a reassuring out-going message on it and answer it only when it works for you. Do you know if he's burning up the phones of your siblings as well?

HB

secondcor521

Thanks everyone!

I realized that I left some other things out originally that probably impact the context of the situation. His AL facility just went through a significant COVID outbreak (50 out of 65 residents positive, including him) about a week ago, which meant meals in his room, being fatigued and confused from COVID, not being able to see his girlfriend, and no activities. That obviously didn't help.

I am feeling more comfortable with putting my phone on "do not disturb" when I need to. Everyone is right - his call is either not critical and I can call him back when I'm available, or it's critical and the AL facility will call me. I had gotten hung up on trying to be the perfect kid, which is my problem, not my Dad's.

I did ask the AL facility about it, and they indicated that they are fielding many inquiries from him daily of the same nature, and they're doing essentially the same thing as I am (except they obviously can't put him on "do not disturb").

I don't think he's burning up my sister's phones. If he is, they haven't mentioned it. They're both out of state, so his pattern seems to be (a) AL facility staff, (b) girlfriend, (c) me.

I have started not putting things on his calendar and not telling him about upcoming things. When he was more capable, the right thing to do was to keep him informed. Now that he isn't, the right thing is to not burden him with that information because of the anxiety it induces.

I did talk with his NP about depression meds for depression and anxiety. She thought it was a good idea and suggested it to him, but he declined for now. That's probably something to bring up again later.

His phone is not actually set to one button to call. He has to press 14 buttons in order to call me and still mostly retains the capability to do so. For whatever reason, he doesn't leave messages on my voice mail - I usually just get 10 seconds of silence.

MC is not an option currently. That would make it anywhere from very difficult to impossible for him from meeting his girlfriend for dinner daily, which is the highlight of his day. When she moves away in the spring (to be closer to her family), it may become more of an option.

@dancsfo's second point is applicable here. I'm acutely aware that I am in the process of losing my Dad; it is happening nearly daily in front of my eyes. If I could somehow pace myself accurately that would be helpful, but as we all know his future with this is not ascertainable.

I have noticed that his ability to use his calendar, and the phone, and to keep track of time has been declining over the past two weeks or so. He had started using the calendar on his own accord to keep track of things, and I had just been keeping that going since it had been working well...again, up until a week or two ago.

Who knows if it was the COVID, or me being gone, or the lockdown, or the winter weather, or a coincidence - I guess it doesn't matter. But now I see that we have had a stepdown.

I have had preliminary discussions about MC with the AL staff. It does have the minor positive of more people being around and probably a higher staff/resident ratio. But it's more expensive, and it's a lockdown facility. They said that since my Dad isn't wandering or violent or having hallucinations or anything, that he doesn't really need it (yet). The nice thing is that he is in a CCRC-type facility, so the MC wing where he might go at some point is just the next building over from the AL wing he's in now.

Thanks again to all for the good ideas and comments. They were all very helpful.

dancsfo

Glad to read that you have some options in the future and that you are taking a balanced viewpoint.