Phone calls

[magick]

My mum is 80 and has Alzheimer's, somewhere between stages 5 and 6 on the 7 stage scale. She has lived in a care home since last May, just over 9 months.

While she was living at home, she would make many phone calls a day to a small number of people (myself, my sister, my wife at work, my sister's husband at work and a handful of friends). We're talking lots of phone calls a day, up to 20 to each person. The calls would start at 6.30am and go on until late evening. We'd all just stop answering the phone after the first couple, but she's keep on ringing, over and over again. Even after a 24 hour a day carer moved in, the calls would keep coming. The calls were always very desperate in tone. She's always been a very 'needy' person and the AD has exacerbated this tenfold.

Now she is in a care home, the quantity of the calls has reduced, but only marginally. She's occupied during most of the day but come 4pm, they start. She doesn't have a phone in her room, but there is one in the nurse's office next to hers. Sometimes she goes into the room of other residents and uses theirs, either with or without their permission. She says: "I just wanted to hear a friendly voice" or "I have a headache" or "When are you coming to get me?" during her more lucid calls. Sometimes she's much more confused and disorientated.

She hasn't really settled into the home in the nine months she's been there. The other residents seem alot older than her, less mobile and spend their time asleep in the day room. She is totally physically fit and able. She's quite a contradiction to say the least. She's haughty, snobbish and refuses to make friends, yet complains of being lonely. She is her own worst enemy really. I had rather hoped that her moving into the home would have allowed her to be more sociable and given her the daily contact with people that she complained of not getting when she was living at home. But this hasn't happened. At least we now know she is safe and and looked after but she's not at all happy and this still manifests itself through incessant phone use.

I was wondering if anyone else had experience of dealing with high volumes of phone calls from a parent with Alzheimer's especially those who are in a care home, and how you dealt with it.

 

[germain]

Hello magick,

I haven't any personal experience of incessant phone calls as our Mum lost the ability very early on.
I do have a couple of suggestions tho' from others who suffered from this obsessive behaviour.

I think the phone calls are very common to some AZ sufferers and it doesn't seem to make any difference whether they are happy, lonely or whatever. They just make obsessive calls (thinking each time its the first call they've made that day)!

Don't know what kind of CH she is in but there must be something that can be done either by the home or the phone company.
Am quite surprised that residents have phones in their rooms - not at all common in homes I saw which took dementia residents.
Are these all separate lnes or do they go thro' a common switch board/line ?


Think the CH need to consider security issues - how does she get access to other people's rooms ? PIN numbers on the office phone (easy) and on all the other residents phones would help (and also guard against unscrupulous staff using residents phones ) Also - if they are aware that this behaviour starts after 4p.m. then they need to be on the "look-out" for it and offer distractions.
And if the volume of calls is still as high as before I'd ask the CH how come she's alone and unsupervised for such a long period !

Obviously you might not want to stop all her calls but possibly suggest that she is permitted just one a day etc.

Another thing that could be done is to "call bar" the recipients numbers on all the other residents phones but think this is highly technical and depends on the phone system used. I also think that the recipients could block the CH number and so not receive calls - again technical.

Its a difficult one for you but I think that this is behaviour that's down to the AZ and not her loneliness etc.

All the best with a difficult problem
regards
germain

 

[Vonny]

Hi Magick,

I also have no personal experience of incessant phone calls but I can imagine it can be very trying and worrying.

The fact that she is occupied up until 4pm suggests that she is happy enough most of the time. You'll find threads on this forum where the patient tells the relatives/spouse that they are dreadfully unhappy in the home, and yet when the relatives check with the staff, they discover that the patient is joining in with activities, laughing and happy when they're not around.

I agree the calls should be limited by the CH. Your mum needs the independence to make one or two calls per day otherwise she's likely to feel like a prisoner, but there should be a limit on it for everyone's sake.

Good luck and let us know how you get on

Vonny x

 

[maryw]

I can relate to this! I was inundated with phone calls from morning to night. My Mum lived independently in her own home with care coming in. Normally they were just short phone calls prompting me for a word she couldn't remember (cardigan ). Sometimes she would phone back 10 minutes after I'd answered the question!! Like yours my Mum was very "needy" and very anxious. I just saw it as a way of relieving her anxiety. All I could do was offer reassurance and tell her she was doing really well and we were proud of her. It was very, very difficult, but she did need that reassurance. I felt I had no choice but to accept them and limit their length.

 

[barbara h]

I can relate to lots of phone calls. My mam used to ring my sister and i at work and at home. Any little thing that happened she felt the need to tell us straight away even though i called in to see her every morning and night and she could have told me then. We tried telling her that she shouldn't be phoning us at work countless times but she took no notice. The worst calls were through the night when she used to get confused with the time and she would ring to ask where i was.

When she went into the care home the phone calls stopped because i think she was too confused by then to think about phoning us. I think the care home should maybe be doing more to stop the calls being made to you so often.

My mam died in July last year and it's strange when i think back about the phone calls because i would give anything to speak to her on the phone again - but speaking to me as she used to be before her vascular dementia changed her.

Good luck with everything
barbara h

 

[magick]

Thanks for all your useful and kind words. It all rings so true (excuse the pun!). The problem is that I eventually lose my temper with her. I just don't have the patience to answer the same question over and over again. And of course, she thinks it's the first time she's rung me, so she can't understand why I am so grumpy. Interestingly, if I do shout at her (and I'm sorry to say that I do sometimes), then she won't ring me again that day.

She's in a home that has residents with dementia, but the unit she is on mostly consists of older residents that have mild dementia or none at all. At 80, she's pretty much the youngest in there.

I think that your idea of asking the CH to put a code on the office phone is an excellent one though it might drive her into other residents' rooms if she can't get access to one phone in particular. My sister and I would need to make more of an effort to call her daily I think, so she didn't feel totally abandoned.

She is always ringing to complain that I never come and see her. Last weekend, she rang one hour after I dropped her back at the home (I had taken her back to mine for Sunday lunch and the rest of the afternoon) to ask when I would be coming. She had completely forgotten that she'd just spent 5 hours at my house! I find that very frustrating that no matter how much I see her or talk to her on the phone it's not enough for her.

 

[Lynne]

Hi Magick

Two things occurred to me when I read your post -

1/ Is it sundowning which kicks off this evening behaviour.

2/ Is it (as said above) that she is happily occupied, despite her claims to the contrary, up until teatime.

Have you (or perhaps your sister or wife) mentioned the frequency of the calls to the CH Manager, and asked his/her advice? I'm sure this will not be the first time this behaviour has been experienced.

Would it be possible to arrange visiting (perhaps a rota, as you are not alone in your care for Mum) in the evening rather than the daytime, when other distractions are available?


You describe her as follows -

She's haughty, snobbish and refuses to make friends, yet complains of being lonely. She is her own worst enemy really. I had rather hoped that her moving into the home would have allowed her to be more sociable and given her the daily contact with people that she complained of not getting when she was living at home.

and I do not doubt that this is how she was when she was able to live at home (her home/your home?). But Alzheimer's Disease can & does cause character changes in those who suffer from it. Have you ever been able to observe her in the CH without her knowing you are there, to see how she does interact with other people? You might be surprised - or she might genuinely be lonely & isolated by her attitude.

Forgive me for being blunt, but you contradict yourself in the following statement.

She had completely forgotten that she'd just spent 5 hours at my house!
I find that very frustrating that no matter how much I see her or talk to her on the phone it's not enough for her.

Yes, she HAD completely forgotten. Alzheimer's steals away the normal brain function which allows intelligent people to remember things, an ability which 'normal people' take for granted. She is not wilfully pretending to forget your kindness & hospitality, just as she is not pretending to forget the 1st (& 2nd & 3rd) phone call of many in an evening.
So she does not understand your anger when you receive the Umpteenth phone call but, perhaps because it makes a deep emotional impact, she stops calling that night.

I also used to lose my temper with my Mum; believe me, I understand that you do, & why you do.
Her neediness is beyond your ability to satisfy it and the frustration makes you snap sometimes.
I understand your position because in some respects I have been there.
I can only imagine how frightening life with Alzheimer's Disease, no short-term memory, loss of security, total loss of control over her life, must have been for my Mum,
or yours.

Best wishes

 

[Cl13]

Mum as been living with us a few months now, but your post reminds me of the numerous call I would have off mum, she would ask, is it frid almost every day but frid, that was hairdresser day, I couldn't understand how she never knew what day it was but never missed her hair appointment, she never knew if it was 10 AM or 10 PM always checking what the time was, but was always at the hairdressers on time as well, we had SKY put in for her after dad died thinking she would always have something to watch in the evenings, BIG MISTAKE LOL, I spent hours telling her how to get to the chanel Heartbeat was on ect although I had written out all the chanel numbers, cut out a picture of the control with little arrows indicating what all the buttons did, it made not a scrap of difference.
Now mums with me so the calls ofcourse have stopped, but that lost, confused panick I dont think will ever go away, now she wants the taxi number after tea because " I wont find my way home in the dark", never knows what day it is, knows my name is Lynn but doesn't know I'm her daughter, and so it goes on,
by4now Lynn