Repeated phone calls

[CeliaW]

Good evening all. I wonder if anyone has similar experience with an increasing problem I have with my mother making multiple phone calls to me - often only five or ten minutes apart? I live at some distance and have always provided her phone support whilst my sister and a local care agency provide her with the practical support.

I have had to resort to leaving my answerphone full so that when Mum phones and I am out, she gets the recorded voice saying that she is unable to leave a message and she seems to accept that. When she was able to leave a message - then she would leave them continually until she filled the machine - getting increasingly distressed as she seemed to think I was ignoring her.

Her calls now are getting more and more frequent and are especially difficult to manage in the evenings and weekends. Mostly they concern when her next carer will be in and if its arranged etc - or what she should do etc. I have tried reminding her regularly what is happening and when, saying what the time is when I call or she calls me as she is always reluctant to check this herself. I have tried telling her in different ways and asking her to tell me what she understands is happening etc.

If I ignore the phone ringing as sometimes I have to do if in the shower etc, she just keeps ringing and ringing until I answer.

I just feel there must be a better way to deal with this for both our sakes as obviously Mum is anxious and worried and I get increasingly stressed as the day/ evening goes on.

Any help much appreciated. Mum has vascular dementia, has what I believe is called sundowner syndrome and can be very rude and aggressive if she feels she isnt getting what she wants or if you ask anything she doesn't like. I love her to bits but not sure how much more of this I can cope with, especially if I get runs of night calls or early morning ones and so am too tired to do my job properly.

Thanks for taking the time to read this...

Celia

 

[Onlyme]

Hi Celia

I went through this and used to cry when the phone rang. MIL's record was 10 phone calls in 40 minutes when I didn't pick up. It felt like water torture and I hated going to bed due to night calls, leaving the house as I knew that the machine would be full when I got back but if I rang her when I got in even 5 minutes after the call she wouldn't know she had rung or what it was about. She had carers and even rang me while the carer was out of the room. They came back in and asked who she was talking to. She seemed to have a loop in her mind that she had to ring but didn't know why.

Its so difficult and I know the advice is to unplug the phone at night but I was afraid to turn the phone off at night incase she really did need me but it made it very difficult to function without sleep.

 

[jeany123]

There is a thread here that deals with the same sort of thing it might be useful to you



http://forum.alzheimers.org.uk/show...208&highlight=repeated+phone+calls#post301208

Jeany x

 

[CeliaW]

Thanks for the replies - I had read a couple of threads and looked at some of the help sheets but not seen that one.

In a small way it helps to write it down and find other people have the same issues - even if there are no easy answers.

Thanks

Celia

 

[Derek61]

I'm in the same situation, been looking after my parents for 8 years now, dad died 3 years ago with motor neurone disease, and mum has dementia/Alzheimer's. I live about 3 miles away from mum who is OK during the day. It is the nights that I dread. She has left the house on a few occasions, and I've been called by very (up till now) understanding neighbours, as she knocks on their doors at all hours. I end going around at all hours, 5am, 1 am, to sit with her and try to calm her down. I'm getting burnt out, I sometimes lose my temper, as she wants to go home, to the home she is living in now. I then feel so guilty, as nothing I say has any effect.

They say that people benefit from stimulation, but I find a very high correlation between outside activities and increased confusion and sun downing. Its a catch 22 situation, keep them stimulated and make sure they get exercise, but the effects are worse.

I'm dreading tonight, its nearly 10:30pm, and I just left 20 minutes ago. I'm on call 24 hours of the day, 7 days a week, 52 weeks a year, solid for the last 3 years. I'm exhausted, and don't know what to do next. She is usually OK during the day, but the nights. Would carers coming in at night help? or just cause more confusion? Do I ask for some other medication other than aricept? or is it time for a care home? I just don't know what to do.

 

[Grannie G]

However painful it is, these repeated phone calls demonstrate the anxiety experienced by people with dementia who live alone .

I know no one wants to make decisions too soon but those who live alone and experience this night time anxiety really do need residential care for their own safety , comfort and well being.

Please do not wait for a crisis.

 

[CeliaW]

Oh dear Derek - I know a bit of how you feel. I know SS can offer alarms that let you know if someone leaves a room / house - might that help?

I think, from reading other peoples threads here, that you have to discuss all this with the SS and GP/ Consultant and ask for help. I am sure they could at least offer respite - I don't know the position re overnight carers but there are many experienced people here who will.

I hope you get some sleep but I know how it feels as you can't really relax and you sleep with one ear ****** - if that's possible!

Take care

Celia

 

[Derek61]

Yes that is how I go to bed, with a phone on the bedside table, waiting for the call, hopefully falling asleep. I appreciate what granny G says, but a care home is a huge one way step, and she is fine during the day. The burden of guilt is huge. My brother offers little in the way of support, and I just could not face moving in with her to look after her, selfish I know as I live alone, at the moment, but my now ex-girlfriend left to move in with her mum, who has very advanced Alzheimer's and she often just wants to run away, or just die. I just could not face that. I've already given up my career, to work self employed so that I have more time to see to mum, and it has impoverished me. I'm going to call the nurse from the memory clinic tomorrow to discus.

So I have huge guilt problems, and consider myself selfish. Mum always used to say when she was fine, If I ever get like that put me in a home. But now she says she is fine where she is, and there is no way she is going in a home. How could I face her if I did do it? Hopefully a good nights sleep will help clarify things.

I have read that melatonin can calm sundowning down? is it any good?

 

[FifiMo]

When my mother was up and about all night and phoning me at all hours, I spoke to her GP who had the following to say:

1. Can't give sleeping tablets etc because she lives alone and would put her at greater risk than she is now.

2. Get careline phone installed and get her used to using the pendant. This can now also include various alarms being installed in the house and if they go off then it goes straight through to the careline provider etc who can get the appropriate help.

3. That I had a right to have a decent night's sleep. He said that his advice would be to make a night-time recording on the answering machine along the lines of - Mum, it is now nighttime and I am in bed so can't answer the phone right now. Go back to bed and get some sleep and I will phone you as soon as I wake up in the morning.

All of the above was sound advice, with a few snags in that you have to tell neighbours etc not to phone you but hit the careline button instead if they find her outside wandering around etc. You also have to get over the guilt of not answering calls before you can even sleep - mine was the - "I hope there isn't a real emergency - should I get up and answer it anyway.... The clincher for me was when I asked my mother why she hadn't called my other 2 sisters - she said oh they are busy and work hard so I don't like to bother them! Grrrrrrrrrrrrr ! LOL

Fiona

 

[CeliaW]

Derek - hope you got some sleep last night and good luck with talking to the memory clinic nurse.

Celia

 

[CollegeGirl]

This may sound really daft, but I've been trying to think of something that might help you.

Could you buy yourself a really cheap mobile phone and give that number to your mum, saying that you've changed your phone number? Or programme her speed dial, or whatever she uses, to ring only that number?

You could then record a personal message to your mum, offering any reassurances that you think she might need, bits of information, etc. (maybe allowing her to leave a message if she wants to [in case she really does need help] or maybe not if this causes problems) and then leave the phone on voicemail, with you checking the phone at an interval that is acceptable to you, say once an hour or every two hours, whatever you are happy with. You don't need to tell your mum that this is what you're doing, just let her think that you're out if she's happy with that. You could then ring her at times you're happy with in order to check that everything's okay.

I know this isn't foolproof and it would be difficult to use this system through the night (unless you were prepared to set your alarm for once during the night so that you could check for messages in case she did genuinely need you?)

Not sure if this will help but I can understand how anxious you must feel, getting these phone calls all the time.

Fortunately I don't have this problem because my dad is always with my mam, but even if he wasn't, she's not capable, I don't think, of making a phone call unassisted. However, that throws up other problems if an emergency occurs!

Good luck, I hope you get sorted one way or another.

 

[fluff]

However painful it is, these repeated phone calls demonstrate the anxiety experienced by people with dementia who live alone .

I know no one wants to make decisions too soon but those who live alone and experience this night time anxiety really do need residential care for their own safety , comfort and well being.

Please do not wait for a crisis.

We have no choice. m-i-l has been making these calls for the past 2 years, but she refuses to be moved and cannot be moved against her will. It seems to me that the sicker she becomes, the more determinded she is to stay in her own home. It is a constant worry, she has carers come in 4x a day but really needs 24 hour care. It may sound awful, but we are longing for the crisis that will force the move.

 

[fluff]

So I have huge guilt problems, and consider myself selfish. Mum always used to say when she was fine, If I ever get like that put me in a home. But now she says she is fine where she is, and there is no way she is going in a home. How could I face her if I did do it? Hopefully a good nights sleep will help clarify things.

Derek - the only thing I can offer is sympathy and recognition. My m-i-l would have been horrified at the situation she is now putting her family through. If she had watched it from the outside she would have been convinced that the only sensible move would be to put her in a home. But now she is 'fine' too and there is no way she will be moved. She is due for an assessment soon but last time we were told she understood her own decision and until that is reversed we have no power to act.

One thing I am convinced of though is that your mother would not want to destroy your life. You are not being selfish, in some way you are following her real wishes.

 

[Chemmy]

I'm with Granny G on this one. Care homes are not just about nursing-type care, they're also about supervision and companionship and your mum would seem to be becoming anxious about spending prolonged periods on her own. During the day, neighbours and carers are about and perhaps she still goes out if she needs to be in company.

You are certainly not selfish for not wanting to move in as her full-time carer. I applaud you for having the courage to draw up your own personal line in the sand - your ex-girlfriend's experience is not uncommon, as she has learned to her cost.

Caring is a compromise and your mother's needs are no more important than yours. If it all gets too much, don't be too big to admit it. If I was in your position I would be looking around at potential CHs. You might not need one tomorrow, or next week..or even next month.. but having Plan B up your sleeve can be very reassuring.

 

[Onlyme]

However painful it is, these repeated phone calls demonstrate the anxiety experienced by people with dementia who live alone .

I know no one wants to make decisions too soon but those who live alone and experience this night time anxiety really do need residential care for their own safety , comfort and well being.

Please do not wait for a crisis.

I begged SS to come out and when they did MIL told them she was fine and they decided she was. She refused to talk about a home and screamed at us if we mentioned it. SS managed to close her file twice and, as some will remember, it took a most dreadful crisis to end her living hell.

 

[LKay]

I know this feeling all too well! My grandma has had Alzheimer's for four years now, and this has been a constant problem ever since the start of it!

It's infuriating, one day she called about 25 times in 2 hours - in the end I had to turn the ringer off the phone as I was trying to do college work and it was impossible to concentrate with the constant calls!

Just today she's called up asking 'What's happening today?' about 5 times this morning, and this evening she's called up a couple of times complaining that her house is too cold and how does she turn the heating on... her house is small and very rarely cold. We have also had to remove all sources of fire/heat (other than radiators) from her house as a couple of months ago she forgot to turn her electric blanket off and nearly sent the house up in flames.

It's insane. We just try to laugh it off but it is incredibly frustrating!

 

[Portia]

We too had increasing amounts of phone calls, usually just after the carer had left,
and through the night too. To me it indicated that, despite wanting to be at home (after a long hospital stay), Auntie was in great distress when left alone, and took no comfort from being in her own home.
We would arrive to find her curled up in a chair too frightened or exhausted to move.
When she did move it was to empty drawers, move furniture and roam aimlessly. It was awful for us to see her so distressed & full of anxiety, as we thought she would improve when in her own home.
I think the fact that she couldn't function like she used to just overwhelmed her.
After a few weeks she was admitted to hospital again, on medical grounds, and her anxiety immediately improved. That was when we decided that a CH was the best option, as her safety was the most improtant thing, and we had seen with our own eyes that being in her own home had given her no comfort whatsoever.

ps. she has vascular dementia

 

[CeliaW]

I think with Mum its a mixture of feeling lonely and being muddled as to what is happening/ time of day - particularly in respect of when next carer is due. Sadly, for the moment, getting her another carer visit or sitting service is on hold as she refused it saying she likes her own company and sits and reads (she has limited vision and can't manage large print even) and so was fine. After SW was gone she told me she didn't want a stranger coming in to say she couldn't manage and so would get her "put away" - and she "wasn't stupid, and not falling for her tricks" - referring to my sister. We talked for quite a while and I tried to explain it wasn't a trick and just to give her more company and a little more help. She finally agreed that I could tell the SW why she had said no but I don't know if it will be accepted.

As for the not knowing what to do or what is happening, I don't know any solution to that as it is so variable and although I try different ways to give her information about time of day (relating it to what has happened, encouraging her to look at clock etc) - how well it works and satisfies/ comforts her is very random.

LKay - how well I know your comment about Whats happening today? That is one of Mums and also "What do I do now?" (Sister interprets this as I tell Mum how to organise her day...) In response to the latter - I try suggesting things in pairs - saying what is on TV / Radio, suggesting a drink, that we have a chat or singsong on the phone, sitting enjoying sunlight when the weather allows etc - but I can't give many options or she then can't decide and gets fussed so we work our way through discounting the ones she doesnt fancy - decide on one - maybe the TV - she switches it on - phone hung up.

Ten mins later - phone rings... No sound of TV - "When is the next carer in? what am I doing now?" We have a joke now when she keeps doing it - I suggest she stands on her head and sings the national anthem - that makes her giggle and she tells me I am daft and sometimes that breaks the cycle and she can chat about something else and then hang up and appear to be quite happy again.

At least it keeps my ingenuity gene in good practice!

 

[craftyviola]

I agree with previous posts from Grannie G (Sylvia) and Chemmy. Mum was always on the phone to me when she was living in her flat because something was causing anxiety. Sometimes every five minutes when she'd forgotten about the last call on the same subject. Being so far away was so frustrating since I couldn't pop round when she couldn't work the TV or when she couldn't find something or even be directed towards the missing object.

No matter how "fine" our loved ones are during the day, it is during the twilight and small hours when these anxieties tend to surface and it is constant assurance that they need which unfortunately cannot always be provided at the other end of a phone.

Personal safety and wellbeing is such a crucial factor for our relatives living alone - whether it is the risk of falling (and not having the presence of mind to summon help) letting unknown people into their home, being taken in by scams and unsolicited phone calls etc etc.

As recently as last November, if anyone had suggested that my unsafe mother should not be living on her own because of these risks, the lack of company (which I think may have been the trigger for the late night repeated phone calls) I'd have said (and I did on one or two occasions) that she could manage with the support she was being given. I also said I did not think she was "bad enough" to be in a care home.

Now six or so months later she is settled into a care home close enough for me to visit daily if I want to, there is absolutely no anxiety. There are caring staff to reassure her all the time, 24 hour round the clock care, someone to help her with the most basic practical everyday needs, people who know her likes and dislikes, people of her own age.

I did not wait for a crisis. I can now sleep because I am not worrying. The flat will have to be sold to pay for the care fees. I hope she lives to a ripe old age and our inheritance is spent on her care.

There is a phone which we had installed by her bed. She has never picked it up to ring anyone, unless someone is with her and suggests she rings a relative for a chat.

 

[CeliaW]

Craftyviola - I hear what you are saying and I do think Mum would be better off in a care home although she is bitterly against it.

Late last year my sister, who has POA etc was saying that after her birthday on Christmas Day then she would look into Mum going into care - yet that has all now seemed to change - even the SW doesn't seem to think that Mum needs to leave her home and they are talking about maybe her having extra visits in October time when the nights draw in...

Part of the reason Mum is resistant is because she has always had my sister saying about getting her "put away" and part because she has a dread of a home - maybe as someone said in another post, seeing it as a workhouse type scenario. When she had three days respite when my sister was on holiday - it was badly managed as she wasnt told why or when going - a friend of my sisters dropped her off and picked her up as sister was on holiday etc etc. This could have been an ideal gentle intro to the idea but a missed opportunity.

The temporary SW has been very helpful in terms of the key issue and I am just holding fire until the main one returns from sick leave and hope to continue to build up a relationship with her so that Mums best interests are served - and I do think that includes a move to a care home sometime in the near future but I have to get support for this from the SW as it seems sister has changed her view about the need - does she fear Mums small amount of savings disappearing? loss of carers allowance? I don't know - maybe I am being unfair...