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Old 01-19-2012, 09:17 AM   #1
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Ah, the phone... thoughts welcome

My topic is moderate dementia (with a lot of delusions and confabulation) and the phone.

At my aunt's residence, they subtly discourage her from using the phone. They put it to the other side of the bed, where she often forgets about it. She does not really know anymore how to use the phone and if she really wants to make a call, they help her dial the phone.

Sometimes her phone rings, she does not even realize what it is. If I am there or an aide, they will pick it up for her and get her to the phone. But when she is alone, she does not even realize it is the phone ringing.

In addition, she is rarely in her room, because she cannot be left alone.

Occasionally, on a good day, she will ask me for her phone book. I am holding it at home because in the past she has stayed up all night (she is not well oriented to time anymore) calling everyone in the book (including the numbers of people who have passed and bothered strangers who just happen to have that number now), not only disturbing innocent people but agitating herself greatly.

I do not bring the book back when she asks, but I keep the key numbers on my phone, so I can say, who would like to call, we can call them now. That way, I can make the call, "prepare" the person on the other end, and graciously end the call when it gets past the "thinking of you and the good old days" phase and could start to become agitating to both parties. (Like when she tells them they don't feed her, they hang her on the cross at night, and lock her in the vault on the weekends.)

Sometimes when I ask who she wants to call, she cannot come up with the names of people she wants to call.

I have told family and friends that she is not in her room a lot, and that even when she is, she does not really understand the phone anymore. I have suggested that if they get no answer, they can call the nurse station, ask for her, and they will check her room and pick up the phone or even place the call back to her. They will even go downstairs and get her from "therapy" and bring her to her room to take a call (they are really good there). They can also inform them if she is having a really bad day and if a phone call would not be advantageous.

I have repeatedly told them this... and I and my sister do it all the time... but the others don't bother and are giving me a hard time about this. They feel I am isolating her and they think I should get her a Cell phone that she can carry around with her! (She had 4 at home in the past two years and couldn't use any of them and now cannot even understand how to make a call, but I should get her a cell phone!!!). I have told them no, I have tried to explain that this is not a normal "hospital" situation, where you pick up the phone, make a quick call to someone who is sitting in bed all day. I have explained that a cell phone is way beyond her at this point, and that if you want to call her, there is a reliable protocol in place. It takes an extra call to the nurse station, so you can't just squeeze it in in an off moment, but it is not that onerous and only takes a second phone call to make the arrangement.

I spoke to occupational therapy about this and they feel I am doing the right thing - they said my aunt can still talk on the phone although she occasionally gets confused when she hears voices coming out of it and cannot understand there is a real person on the other end... but handling a phone and certainly a cell phone is out of the question.

I understand the need for her not to be "cut off" and I appreciate that others are trying to reach out to her.... but the others who are well need to realize that the ease of phone communication no longer exists for her and that they who are able need to make a bit more of an effort - while she is still able to enjoy a short phone call. When she isn't or when it consistently causes her agitation, then I will have to draw the line at that too.

How I WISH my aunt were still at the point where we could pick up the phone, call her cell, check in and have a nice chat. But she is not, and they have to just adjust to it. What my aunt "wants" sometimes is not always what is actually good for her, and I think we need to keep that in mind too.

I would like to know if others have experience of this, your thoughts... or any alternate suggestions.

 
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Old 01-19-2012, 09:28 AM   #2
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Re: Ah, the phone.... thoughts welcome

Quote:
Originally Posted by Suzy0513 View Post
My topic is moderate dementia (with a lot of delusions and confabulation) and the phone.

At my aunt's residence, they subtly discourage her from using the phone. They put it to the other side of the bed, where she often forgets about it. She does not really know anymore how to use the phone and if she really wants to make a call, they help her dial the phone.

Sometimes her phone rings, she does not even realize what it is. If I am there or an aide, they will pick it up for her and get her to the phone. But when she is alone, she does not even realize it is the phone ringing.

In addition, she is rarely in her room, because she cannot be left alone.

Occasionally, on a good day, she will ask me for her phone book. I am holding it at home because in the past she has stayed up all night (she is not well oriented to time anymore) calling everyone in the book (including the numbers of people who have passed and bothered strangers who just happen to have that number now), not only disturbing innocent people but agitating herself greatly.

I do not bring the book back when she asks, but I keep the key numbers on my phone, so I can say, who would like to call, we

I have repeatedly told them this... and I and my sister do it all the time... but the others don't bother and are giving me a hard time about this. They feel I am isolating her and they think I

I would like to know if others have experience of this, your thoughts... or any alternate suggestions.
Suzy,

This is a common problem for people with moderate dementia.
Well my FIL has severe stage of AD (Alzheimer's disease.) Now he is in the nursing home for memory impaired, the directors don't recommend that we install a phone in his room in case he calls 911 or 411!! We have to call the home's phone number and the caregiver will give him the portable phone to talk to us. It takes a little time because they have to move him away from the noisy place at times.

Back home (he had stayed home alone from 10/2004 to 7/2010), it is a long story. yes, his phone was next to him. Every time the phone rang, he picked it up. My husband used to call him everyday back home. There were caregivers next to him but he got the phone himself.
Well, he called 411 and had spent some fees on that just for friends in the local area beause he does not remember the numbers. He told the friends that he was hungry while he just ate... The friend didn't believe him. Since we have caregivers next to him, we don't worry too much as the person can watch and make sure he is OK.
Once he got the phone list on the wall (we put it up for him) and called everyone because he was upset with the caregiver. Well he never used to be able to dial anymore that year and suddenly he dialed the numbers one by one! OK this neighbor got it and came over. The neighbor wanted to make sure if he had 24 hours care...

My FIL used the phone to buy vitamins which he forgot to finish, he used the phone to change the phone co. twice and I had to run around to change the bills to pay... We are lucky he never called 911!
Also, my husband told him a cell phone is good. So my FIL bought one himself. Guess what? He lost it in 2007!!!

You are doing the right thing. No phone next to her side. She does not need a phone book. Just a list on the wall for emergency. I would say it helps if she can call a little bit for urgent matters. But it is hard to control it if no one is next to her 24/7. The only way is to take it away from her unless you watch her all the time.


I know how you feel. However, many friends knew that my FIL was not making any sense anymore. Maybe when your family realize that your aunt sounds strange or funny on the phone, they will stop bugging you.

The thing is we cannot believe in anything they say - my FIL said he was hungry - well, he just ate!! He said he was alone or blah blah blah and it was not true - the caregiver was there!!

You are doing the right thing so don't worry about it.

Hugs,
Nina

Last edited by ninamarc; 01-19-2012 at 11:52 AM.

 
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Old 01-19-2012, 11:38 AM   #3
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Re: Ah, the phone... thoughts welcome

Suzy, I had the very same problem with Mom when she was in AL and first arrived her. I had the phone completely take out after she called 911 and had the police respond. She reported their van stolen... by her daughters... in the middle of the night She too was unable to make calls or answer the phone herself in an effective way. Like you the facility was great about making or taking calls for her. Like your Aunt, Mom didn't have the cognitive ability to "learn" now to use a cell phone. Like you I got flack from those that didn't understand. I just told them... I am not trying to isolate Mom or be ugly. The disease is limiting her abilities and she can't do what she could in the past. I wish you would just go see her instead." I explained that they could call the facility anytime but don't expect Mom to be able to be who she used to be. Sometimes I was blunt with them but right now it's NOT about them. It's about your Aunt and what she needs. My thoughts, if the phone is not there then they have to go through the proper channels. That is just how I handled it Remember... this is about your aunt and not all those others that are soothing their own fears and guilt with a phone call they want to be "normal".

Love, deb

 
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Old 01-19-2012, 11:53 AM   #4
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Re: Ah, the phone... thoughts welcome

Let me reiterate what Deb said.

This is about what your Aunt needs...not what the others need. She is the most important person in this story.

Love, Meg

 
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Old 01-19-2012, 01:10 PM   #5
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Re: Ah, the phone.... thoughts welcome

Well thank you kindly for this response.. I do not feel nearly so bad now.

I truly understand the frustration you describe about the people who are called believing the person - that has happened all along with my aunt, one of her neighbors called me dying and in a panic because she believed whatever story my aunt told her.

But hearing your story is very helpful, and I want to say thank you again!!

 
Old 01-19-2012, 01:12 PM   #6
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Re: Ah, the phone... thoughts welcome

Deb, thank you so much for your thoughtful reply. I feel a lot better after reading the responses.... I know that eventually, probably sooner rather than later, I will have them remove the phone, but in the meantime, reading these experiences and responses has proven very helpful.

Thank you yet again!!

Suzy

 
Old 01-19-2012, 01:14 PM   #7
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Re: Ah, the phone... thoughts welcome

And WOW! The following statement you wrote TOTALLY hits the nail right dead center of the head!

" this is about your aunt and not all those others that are soothing their own fears and guilt with a phone call they want to be "normal". "

 
Old 01-19-2012, 01:15 PM   #8
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Re: Ah, the phone... thoughts welcome

Another great response - and another heartfelt thank you from Suzy!!!

I do not know where I would be without this board!!!

 
Old 01-19-2012, 08:18 PM   #9
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Re: Ah, the phone... thoughts welcome

The person with dementia is very confused and so he/she will do strange things on the phone. Often people don't realize that and they want to contact the person with ease. However, the person with dementia can no longer use a phone like regular people. So we have to consider the person's need and take away the phone or call for them.

In a way it is also 2-way street. If 911 people are called with false alarm, sometimes there are fees or sometimes they would knock down the door and the family would end up paying for the repair... (My FIL pressed the lifeline wrongfully before he left his home and 911 came to break into his back door!) Sometimes if the friends misunderstand the stuff the person says, there would be a lot of misunderstanding. Taking away the phone or supervising the phone call is actually better for everyone - the person and people around him/her.

Nina

Last edited by ninamarc; 01-20-2012 at 06:51 AM.

 
Old 01-20-2012, 03:50 AM   #10
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Re: Ah, the phone... thoughts welcome

Let me agree to what everyone else has written about it not being about others convenience, but about what your aunt needs. People who haave not walked the walk can not understand the situation. Please don't feel guilty about doing what is best for your aunt. Others will just have to make a little more effort if they want to communicate with her.

 
Old 01-20-2012, 06:52 AM   #11
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Re: Ah, the phone... thoughts welcome

What I do is just to tell the family the fact and quote some incidents so they can gradually understand. Or let them try to call and find out what kind of strange stuff she tells them on the phone... They will see it for themselves. Don't set things up for them. You do this for your aunt, not for them who don't live there!!
My FIL used to have this lady friend who had lots of judgments on how we should do things and she even told us when to sell the house and blah blah blah. We just got one offer and hope it sell it for good. His neighbors also told us what to do.

The point is: ignore them and do what has to be done.


Hugs,
Nina

Last edited by ninamarc; 01-20-2012 at 06:54 AM.

 
Old 01-20-2012, 09:58 AM   #12
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Re: Ah, the phone... thoughts welcome

Quote:
Originally Posted by meg1230 View Post
Let me reiterate what Deb said.

This is about what your Aunt needs...not what the others need. She is the most important person in this story.

Love, Meg
so simply said,

judy,

 
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