My mother has frontotemporal dementia and lives in a memory care home in Ontario. I visit her almost every day, sometimes twice. And she still calls me multiple times throughout the day asking when I'm coming. Sometimes I have just left the parking lot when the phone rings.
The calls are not only about visits. She calls asking about the plan for the day, what time she will eat, where she will eat, when she will see me again. The same questions, cycling through the day, every day. She does not remember asking. Each call is the first call from her perspective.
This is what I have read is called dementia separation anxiety. The anxiety resets with every memory gap, which is why answering one call does not prevent the next one.
I answer as many as I can. I have a job, young kids, a marriage, and other family commitments. I have never been able to bring myself to block her number. The guilt of a missed call is already hard enough, and I know she cannot help it.
I have not tried scheduled call times because I do not think it would change anything. The calls are not because she has not heard from me. She hears from me constantly. The anxiety that drives the calls resets regardless of what I do.
I am not asking about call-blocking apps. I have looked at TeleCalm. I have also read about simulated presence therapy as a clinical approach to separation anxiety in dementia, but I have not found anything that applies it practically for phone calls.
And honestly, has anyone figured out how to handle the guilt? Of not always answering. Of sometimes dreading the phone ringing from your own mother. Of wondering whether you should just take the phone away even though that feels completely wrong.
What actually helped your family? Especially anyone whose loved one has moderate stage dementia and is still in the repetitive calling phase, not yet past it.
You are running yourself ragged for someone who has no short-term memory and no concept of time. Your there every day and she does not remember. She is being well cared for. Live your life.
With this level of repetitive and circular thinking going on, your mom would likely benefit from medication to relax her mind. And you would benefit from letting your calls go to voice mail, at least during working hours. Allow yourself days off from visits to mom too, so you can spend time with your family who do remember those times fondly.
"Your own mother" is no longer the woman you know and love. She's lost that part of herself to dementia. You need to remember that and realize she's not registering the visits or the phone calls in her brain anymore. Only YOU are worrying you're not doing enough. She's not even aware you're coming by. That's the ugliness and brutality of FTD and the Long Goodbye you're dealing with. Don't torture YOURSELF along this journey, my friend. Plan a way to visit for a bit and then cry on the ride home. Then find joy in your family and in your life w/o taking on moms disease yourself. You didn't cause this, you cannot control this and you cannot cure this. Mom is safe and cared for and fed where she's at, and she's unaware of what's going on also. If the phone causes too much grief, it's got to go. My aunt with Alzheimer's was calling 911 to the point they were going to charge her. My cousin had to remove the phone. She never even realized it, my aunt. But her agitation was reduced quite a bit as a result.
I'm sorry you're going through this and wish you good luck and Godspeed with a difficult situation.
He had a lot of repetitive behavioral symptoms that ranged from severely irritating to downright dangerous to himself and others (he was never institutionalized). Compulsions and obsessions are a hallmark of FTD as I’m sure you know.
The only thing that reduced these unwanted behaviors for my dad was calming meds. In his case, Seroquel and Trazodone.
Sometimes, he could be distracted from the obsessive behavior, but only very briefly. So don’t think that would work in your situation.
After time passed and his condition deteriorated, he lost the ability to use devices.
good luck!
I should say I posted this question because I needed a sounding board from people who understand this from the inside.
I hear the advice about letting calls go to voicemail and cutting back visits. I understand why that advice makes sense. What I want to say is that for me, the calls are not the problem. My mother calling me is not a burden. She is reaching for me because I am her person. That matters to me deeply. What I cannot do is physically answer every single call while working, parenting, and being present in my own life.
That is a different problem from wanting fewer calls. I do not want fewer calls from my mother. I want every call to be answered in a way that is genuinely good for her, even when I cannot be the one to pick up.
That is what I have been exploring through the clinical research on simulated presence therapy. The idea is that a familiar voice resolves dementia separation anxiety in a way that voicemail or silence cannot. The anxiety resets with every memory gap. She forgets she called. She forgets the relief. A 2024 peer-reviewed trial showed significant reductions in agitation and caregiver burnout when a familiar family voice responds to repetitive calling in moderate stage dementia.
The guilt piece is the part I still do not have a clean answer for. I think it lives alongside the grief rather than resolving separately from it.
Thank you for being here.
My recommendation would be anti-anxiety medication and more effort by the memory care staff to involve her in activities that she might find enjoyable and distract her from the telephone.
Never in my life did I imagine my mother loving to sing and play music the way she does now in memory care. Before dementia, she never would've tried this. It was only through the staff's continued effort to get mom out of her room and involved did this happen.
I am not sure the “guilt” ever gets better as I know I want to do everything possible for my mom but now the burnout is so real I am having to take some days away from being with her in person daily to relying on at home caregivers for her so I can regain some energy. I feel horrible about it, but I am forced at this time to do so. Sometimes we need to just be able to say we are doing our best for our loved ones and accept that - and it sounds like you are doing just that. Blessings to you and your mom. 🙏🏻