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 Incessant phone calls 
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Incessant phone calls
I don't suppose there is much practical advice for this situation, but I am posting it anyway. At least it allows me to vent!

My mother, who has been in an SNF for a year now, has had a significant decline over the past couple of months and now is more confused, less able to understand what she is told, and unable to perform certain basic tasks--though she is still capable of "showtime" when the family calls.

Another change is that now she calls me incessantly. The calls come in spurts, sometimes a dozen or more in fairly rapid succession. My receptionist has been instructed to let the calls go directly to voice mail. I have a special ring tone on my cell for her number so I know when she calls and can let it go to voice mail. Then I screen for whether she really needs immediate help. If so, I call, and if not, as is more likely, I call during lunch or after work or when I have time. It's just about impossible to get off the phone with her in less than 30-45 minutes, so these measures are necessary or I would never accomplish anything. Also, if she is calling about something the nurses can and should handle, I call them instead of her.

She would be very hurt if I told her not to call me, and that's not what I want. I'd like her to stop calling incessantly for something that could wait. Oops, there I go again, trying to apply logic to an illogical mind.

This is also creating a strain in my marriage because the incessant calls drive my husband nuts. (He works with me so he's exposed indirectly to the workday calls in addition to the home/cell calls.) I keep reminding him that her mind is not functioning properly but it's not his mother so I can understand why it is even more aggravating to him than to me.

And it doesn't matter how many times I actually go visit her or call her--in fact, sometimes she calls more after I call or visit.

Well, I expect I will be told that this is the nature of LBD--and I get it. As I said, at least I got to vent. (But practical advice will also be welcome!)

Julianne


Mon Jan 10, 2011 2:59 pm
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Location: Ocala, FL
Post Re: Incessant phone calls
Welcome to my world, Julianne. Imagine that the calls are not on the phone but coming from the bedroom every few minutes. Dale thinks all I have to do during the entire day is come running. My only break is when he is sleeping. Then, I'm afraid to make much noise lest I awaken him and the demands on me will start again.

Dale often doesn't know who I am... so he thinks he has a care giver who he is paying to be at his beck and call. He told me that.

I've have told him that I have things to do and that I cannot be expected to come every time he has some thought. It makes no difference. He is no longer thinking rationally.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Jan 10, 2011 3:04 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Incessant phone calls
Vent away, Julianne!

On the practical side, I think that you are handling this admirably. Good job!

Applying logic to your mother is futile. Your husband, however, should be another matter. What would help him to be more supportive of you? I think that is what I'd focus logical attention on.

Hang in there! I hope you can take some comfort from the good job you are doing.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Jan 10, 2011 3:21 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Incessant phone calls
Julianne, your mother won't remember that she just spoke with you. My husband does not have a phone in his room [not that he would know how to use it if he did] but it might be time to consider whether your mother really needs a phone. Usually, the staff will make a call or take a call for a resident. You could tell your mother that the phone company has canceled service to her room or some other ridiculous story that she's likely to believe. Trust me, it's only going to get worse.

Leone said:
Quote:
so he thinks he has a care giver who he is paying to be at his beck and call. He told me that.
Yep--same here. When my husband saw me sitting down and reading he would get angry and tell me I wasn't doing my job. :|

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jan 10, 2011 3:53 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Incessant phone calls
This sounds so familiar! I wrote many, many frustrating posts about this last year because at the time my dad had a cell phone and the ALF room phone. I kept debating about "losing" his cell phone for months. The problem for me was that sometimes he had fallen on the floor and no one in the ALF knew he was on the floor. The emergency buttom was out of reach if a person was on the floor. DUH! So, he'd call me on the cell phone from the floor.
I was his lifeline. So, I felt guilty every time I'd get mad that he'd call me with a non-emergency, and the ALF and I finally worked out some things there so they were keeping a closer eye on him and he had one of those things that beeped if he fell out of his chair, wheelchair or bed. But then then he started calling constantly about delusional things, like "they forgot to take me to meals for 5 days, who's going to get me for dinner?" or "I need to be changed and it's been 2 hours since the CG said she'd be back to change me." His time was all screwed up so he had no idea how long it took the CG to get there, and no idea that he called me or my husband every 2 - 3 min. until he got what he wanted. It was a nightmare. If he couldn't get me he'd start calling his friends and asking them to come immediately to pick up the remote control from the floor, or get him a drink from the refrig. or whatever. His friends lived a minimum of an hour away from him!
He'd take the phone to bed and call us in the middle of the night, or he'd roll over on the phone and it would "butt dial" me, my husband, kids or one of his friends who was on speed dial. Then he wouldn't say anything when we'd answer and we'd think he was having a life-threatening emergency and have to call the ALF in the middle of the night sometimes.
People on the forum kept telling me to take the cell phone away. Just as I was about to do that it got washed in his pants pocket. He was confused and delusional enough by then that I'd tell him I was working on getting him a new phone and I just never did it. It reduced my stress level a lot, so I personally would say, do whatever you can to get the phone away. I was on the brink of insanity by the time that cell phone went through the washer and dryer, and he never did figure out how to use the room phone, thank God!
I still feel bad about it but it was horrible, day after day getting who knows how many calls, usually while I was in the middle of teaching a class or some other inopportune time.
My heart goes out to you. You need to get rid of the phone to maintain your sanity. And, maybe your husband could do some reading about dementia and the stress of caregiving, if he hasn't already???? Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Jan 10, 2011 4:23 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Incessant phone calls
Pat, Leone and Jeanne, thank you for your thoughts! And I am awed by the efforts you are making with your LOs, in comparison to which my efforts are almost inconsequential.

I'm afraid it is premature to take the phone out of my mother's room because all the other siblings and relatives live far away and would still want to call her, not to mention how outraged my mother would be no matter what excuse I gave her.

I was looking at an Alzheimer's online store that sells a regular desk phone but without any kind of dial or numbers. So the person can receive calls but not make them. What a temptation! I guess if things get much worse, I might talk with my siblings about whether they would be on board with me switching the phone to one of these--though I would still have to take my mother's wrath.

She doesn't call anyone but my sister and me anymore, and we call her every day, so as a practical matter, her being unable to dial out would not be a huge issue, though she would think so. She is still having significant control issues and adjusting poorly to the SNF.

My mother has always been pretty demanding but things got a lot worse about three years ago when I orchestrated the cancellation of her driver license because she was a danger behind the wheel. She reacted by making darn sure she called me to take her wherever she needed to go (small town, no cab service). Then of course she held me accountable for her SNF placement--why, I do not know, as her own physician got the ball rolling on that one (I was still trying to find ways to keep her at home). So it is not surprising that I receive most of her calls. If my sister tries to intercede, my mother usually won't talk with her about her concerns, insisting that she must speak with me.

I guess my current methods of restricting her access to me are about all I can do, as I can't reason with her. I do have the comfort of knowing that the SNF will call me if there is actually something seriously wrong!

My husband has been so patient with all of the things I have been through with my mother. It is just this current phase that has him on edge. I remind him that it will not last forever, but some days it feels as if it will. Best solution is to make extra efforts to maintain our relationship so he knows he is still special to me!

Thanks again,

Julianne


Mon Jan 10, 2011 5:19 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Incessant phone calls
Lynn, your message was posting as I was writing my previous message. Obviously, you have "been there" and then some. So far, my mother has not taken to calling in the middle of the night (though we don't have a home phone anymore, just our cells, so if she did I could just turn off my phone). At least I can sleep. I am not on the brink of insanity yet but if it gets any worse, I could get there.

My mother is not totally delusional or confused. She lacks insight into her behavior and she can't have a rational discussion, but she doesn't know that she can't. It is a difficult stage. She would never understand why the phone is gone. I am not quite ready to take it out yet but I am close.

My husband does understand the stress of caregiving. He has tolerated all kinds of intrusions into our lives by my mother but there is something about the incessant phone calls that just drives him crazy. It's probably a good thing because his frustration is what got me started in taking steps to limit my availability to her.

Thanks,

Julianne


Mon Jan 10, 2011 5:42 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Incessant phone calls
It sounds like your mom and my dad were similar in cognition when the phone issue first started for us. He didn't know his behavior was getting irrational and he wouldn't have understood at first either. When he went into the ALF he was pretty high-functioning a lot of the time and it just killed me to think about taking his phone away, even though it was extremely stressful for me, since I was the one who got most of the calls. At one point I programmed his cell so that if he had an emergency (lying on the floor, etc.) he could call the front desk of the ALF. Of course that got abused after only a couple of weeks and at the next visit I checked his cell and that no. had been taken out of the speed dials by some unknown CG. So, the calls started coming to me again. As he became less and less mobile via wheelchair, the real emergency calls became fewer and the annoying calls increased.
Not only did I feel guilty not replacing his cell phone after it was laundered, but it was a double guilt trip because my dad paid for the cell phone family plan for me, my sister, my husband and me. So I really felt awful not replacing his phone but it came down to his phone or my health.
He eventually forgot about having a cell phone but a few months ago said to me when I called one of my kids to speak with him "I think I used to have one of these." I agreed that he did, and he asked me what happened to it. I told him it went through the washer and dryer and was in 50 pieces. He just said "oh" - end of conversation, thank goodness! It will come to an end at some point but I really know how awful it is to get endless amounts of calls and not know how to be able to stop it. You have my empathy! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Jan 10, 2011 6:08 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Incessant phone calls
Lynn, it does sound as if my mother is at about the same level that your dad was when the phone issue started for him. I read an article on line about mid-stage dementia that described my mother perfectly: "At this stage people with dementia increasingly see themselves not as confused in a logical environment, but as oriented in a very unfamiliar and confusing environment." My mother always believes that she is correct and other things are broken or other people are in error.

She can never accept that she made a mistake and she gets very upset if anyone suggests that she has. Yesterday, my sister called her for several hours without getting an answer so she called me and asked if I had gotten through. I called the SNF and it turned out that my mother had turned off the ringer on the phone. When I explained that to her, she refused to believe that she could have done that. So it would be impossible to explain to her that she is calling too often. Of course, another part of the reason for that is she would not recall having made the phone calls!

I know that eventually I will have to do something, probably the first step being to get her a phone that only receives calls.

Anyway, it helps to know that you understand! Thank you.

Julianne


Tue Jan 11, 2011 10:46 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Incessant phone calls
Julianne - that quote summed it up perfectly. I remember at that time my dad saying "Dr. so and so says I have dementia. Do YOU think I have dementia?". He still saw himself as very much in control of a logical mind and anything odd that happened or the few times he hallucinated, it was someone else's issue, not his.
His sense of time went totally crazy. If a CG at the ALF took more than about 2 seconds to get to him when he called, he thought it was an hour, and thus he'd call me constantly to see why no one would come change him, or take him to his meals, or whatever. I'd tell him to please be patient, that they cannot be there every second and they'll be there soon. His response was "they have terrible service here. This place is not what they advertised. It takes hours for them to get to my room." Any rational explanation was useless, and thus he would call and call until someone came in his room. If it took them 10 min. to get there I might get 6 calls in that time. :roll:
He also turned the ringer off his cell phone daily when he still had one. Then he'd call me or my kids and be really mad because we hadn't called, and we called him daily but couldn't get through. He wouldn't answer the house phone at the ALF so we didn't bother to call on that. He'd say he didn't know how the ringer was turned off, he didn't do it!
What a hard role, being a CG! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jan 11, 2011 5:17 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Incessant phone calls
Lynn, I can't begin to express how comforting it is to know I am not on this path alone! So often my mother's behavior is, by rational standards, so outrageous and incredible that I am speechless (not a common problem for an attorney--LOL). But I am getting better at dealing with her alternate reality! Most of the time, I manage not to argue with her (which, again, does not come to me naturally). It makes it so much easier to keep the peace to just shut my mouth or find a way to answer that does not disagree. I keep reminding myself that she will not remember the conversation anyway. I do so want whatever time I have left with her to be as pleasant as possible.

Thanks,

Julianne


Tue Jan 11, 2011 7:47 pm
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Location: Minnesota
Post Re: Incessant phone calls
Quote:
I do so want whatever time I have left with her to be as pleasant as possible.

Good goal, Julianne!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Jan 11, 2011 8:35 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Incessant phone calls
I hear you! It is hard not to correct them, not get into an argument, not to do anything that could agitate them more. Some days there was literally NOTHING that I could do or say that wouldn't get my dad more agitated. Then I'd get really resentful and think "I left my own family, home, work, friends, etc. and drove 500 miles FOR THIS?!!!" Like the "I want a milkshake" days. So, I'd drive an additional hour from my dad's house to the ALF, he'd want something, I'd go out and get it, and when I got back he'd get mad and say "I didn't want this. It tastes horrible. You know I hate this stuff." This, after I'd just gone to the trouble to get one of his lifetime favorite foods.
It was really hard not to feel hurt and angry at times like that. Once in a while I'd leave the ALF early and go back to my dad's house. With an hour's drive each way, I'd have time to think and then I'd feel kind of mad at myself for getting upset with him. Afterall, he was sick with various diseases that no human being should have to endure, especially my formerly kind, loving, generous father. But it's really hard to always be "up" and always have to watch what you say and do, not knowing what irrational way they are going to interpret our actions.
Sending everyone out there a giant hug, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Jan 11, 2011 10:33 pm
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Post Re: Incessant phone calls
Yes, it's getting to be a daily occurrence, doing what she says and then it's not what she wants, or not being able to drop everything and accommodate every wish. She asks for toothpaste and I bring her some, but then it is the wrong kind. What kind does she want? Turns out she wanted denture cream, not toothpaste.

Now she has lost her glasses. The SNF have looked everywhere but cannot find them. I wonder if she threw them out or something. She is wearing her spare pair but is furious because I could not drop everything and cancel my appointments today to take her to the optometrist. Every outing with her is extended by her increasing mobility challenges so I will have to block off an afternoon to do this. She has no idea why it is such a big deal, must have forgotten that I have a job, too. So my answer of maybe later this week is just not good enough.

Remembering her limitations is a challenge even though I know she does not intend to be so difficult. My sister and I both struggle with adjusting to this new person inhabiting our mother's body. No doubt everyone reading this knows what I mean, and then some. Thank you for allowing me to vent!

Julianne


Tue Jan 11, 2011 11:35 pm
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Location: Ocala, FL
Post Re: Incessant phone calls - glasses - Julianne
Dale always wants to wear his glasses in bed at night. He wants to be able to see the people in the room. Is he the only one who wants to 'see' his imaginary people during the night?

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Jan 11, 2011 11:43 pm
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