Tell her how much time/effort I am putting in?

Rishonah

My 91 year old mom is probably at the MCI stage. Memory, cognition, understanding, word retrieval have all declined.  She acknowledges she has some problems but doesn’t realize full extent. She understands enough to ask questions (“what is streaming TV? What does this section on the phone bill mean?  Which way will you go to the doctor’s office?”) but not enough to understand or remember the answers.  She also has gotten quite frail and unsteady. 

We have 24/7 aides so the day to day dressing, bathing etc is taken care of. But ANY phone call or interaction takes way longer and much more effort than it used to. She does not hesitate at all to call with any question or issue she wants to discuss, and always assumes that I can always go on any errands she wants to run or get her to activities she wants to attend. I also am handling finances, appointment scheduling, etc  

She clearly has no idea how much time and energy this takes. I don’t want to make her feel like she can’t turn to me or that I am rejecting her. 

So if anyone has suggestions about how to tell her this I would love to hear it. Or should I not even try because it will only cause upset instead of understanding?

CatsWithHandsAreTrouble

Hi and welcome to here. You've come to a good place.

A lot of people on the forum have had similar experiences with the neverending phone calls. Most suggest getting rid of the phone (if it's safe to do so!) and saying that it's getting repaired and the parts are on backorder. 

Is she living by herself? If she is, she might be needing more care than the aides are currently able to provide. It's often suggested to spend a couple of days with her to see what's going on day to day to get a better understanding of her situation and what needs addressing. Sometimes when PWD (people with dementia) need higher level of care, they often reach out like this. If you do live together, then perhaps just get rid of the phone. I'd wait for other's advice before taking mine since I'm repeating second hand.

And as you suspect, it's almost a moot point in telling her how time consuming it is to interact over the phone with her. Either she won't remember, feel bad for being a burden, or lash out thinking you're rejecting her, or a combination of all three. You know her best so you probably already have a good idea of how she'd take it. 

Come up with a script to tell her when she asks for something you can't do that you wouldn't mind having to say over and over. "Thanks for letting me know mom. I'm in the middle of something right now but I will get back to you soon. Take care, I love you." You could also only answer her calls at designated times and only respond to the latest one. 

Good luck. My mom doesn't use any electronics anymore so I've managed to miss out on this experience.

Ed1937

I don't think you should tell her how much time and energy it takes. I just can't see any positive coming from that. If there are things she calls for that are unimportant, you can just let that go. Tell her you have too much going on right now, but you'll get to it later. The bottom line in dealing with someone like this is always to bring about a positive outcome.

harshedbuzz

Hello and welcome.

I am glad you found us but sorry for your need to be here. 

Has your mom been diagnosed? I can appreciate not wanting to subject a 91-year-old woman to a complete dementia workup, but has her PCP run a blood panel and ordered basic imaging to rule out treatable causes of her cognitive shift? 

So often people think about dementia solely in terms of memory loss and not so much about other common losses that also happen fairly early on. You are, IMO, seeing evidence of 2 of these. The first is anosognosia which is the inability to sense or fully appreciate that one has had a change in cognition that is impacting their abilities in any way. Trying to convince a PWD otherwise will feel like gaslighting and only agitate them. The other is that empathy tanks quite early in the disease process. Everything becomes about them and what they want and need. This can lead to a caregiver feeling quite put-upon as there will be no recognition or gratitude for the additional work their disease is causing you.

What is your goal in telling her?

I wouldn't go there.

She is no longer wired to remember the conversation for any period of time. You could tell her and she will go right back to this maddening behavior in hours if it even takes that long to forget the conversation ever happened. In the moment the revelation that you feel she's a burden will only serve to either hurt her feelings or agitate her. Even if she forgets the actual message, the strong emotional content of it may persist for some time. 

Since she's already having word-finding issues, you can assume that other aspects of speech and language are impacted as well. I noticed that both my dad (ALZ) and son (ASD) turned to questions as a way to attempt to connect when their pragmatic (social use) of language was weak. Her questions may be "making conversation" in a bid for attention. 

Some people find they need to disappear the phone if it becomes relentless and interferes with you getting through your day. Another approach is to let the calls go to voice mail and return them later at a time when you have settled yourself to deal with her new quirks. A few folks even get a burner phone-- with the ringer turned off-- on which they record a personalized out-going message for their PWD and then return the calls at a time that's convenient to them.

Good luck with this. You have my sympathy.

HB

You mention that she has 24/7 care. Are they dementia-trained and routinely trying to engage her and keep her entertained to the degree that she can be? Would adding a few days of a day-program for PWD to her routine help?

jfkoc

Do not try......

Gig Harbor

How about this: when you see it is her number calling answer the phone as though you are the answering machine. “Hi you have reached Jane, I can’t come to the phone right now but if you call back at 2pm I can take your call. Thank you.” After that don’t answer her call until the specified time. Might be worth a try.

Rishonah

Sorry for my delay in acknowledging. Thank you all for the comments.

Rescue mom

Just to support what others, especially Harshed Buzz, said. There’s virtually no point in talking about how much time and energy you expend, because she will not understand it. 

Empathy, or concern for how others feel or are affected, is usually lost very early. It’s all about her, now. Her wants and needs are all that matters now. (There’s a lot in this forum about how hard it is when the caregiver is sick, and the PWD is clueless and doesn’t care.).

You mentioned she has regular  aides. Can’t they help ensure any serious needs are  met? But it sounds like these aren’t serious issues, in reality. Many family members have learned to let voice mail take over, or somehow limit such calls. Or, as others said, tell her you love her, you’ll talk later, “but I have to go now.”