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Support over the phone

Rachel184

New member
Sep 16, 2021
6
0
My dad is my mums full time carer and he will call myself, my sister or brother mainly in an evening during a crisis to chat with my mum to try and help the situation
When she is sad we can help quite easily but talking it through with her, telling her we love her but when she is more emotional, quite angry and talks of being frightened I really struggle to know what to say and feel helpless
I come of the phone feeling like I’ve not helped the situation and have left my dad to continue dealing with things
Any advice? Anyone used any help lines they would recommend?
we are early in our days of receiving support but the need seems to escalating quickly
Thanks lots
 

Midge155

Registered User
Jul 14, 2021
11
0
Hi @Rachel184 have you heard of ‘sundowning’? My mam suffered terribly with that - she was diagnosed only last year but has gone downhill really quickly and moved into a nursing home 6 weeks ago. As soon as it started to get dark she her mood would completely change and she would get very frightened, paranoid and agitated. She lived on her own so would be constantly on the phone to me. Because of her dementia there was no reasoning with her and it was extremely difficult to deflect and try to change the subject. I contacted the psychiatry of later life team (we Iive in Ireland) and the nurse and consultant came and assessed her and tweaked her medication. If I’m honest though nothing really stopped the sundowning especially in the winter months given that it is dark for so much longer. God help your dad, it must be very difficult for him. Take care.
 

Rachel184

New member
Sep 16, 2021
6
0
Hi thanks for the message and for sharing sorry to hear about how quickly your mum has gone downhill that sounds tough hope she is doing ok in the nursing home and settled in ok
My mum was also only diagnosed last year she has been showing symptoms for quite a while and it took us a long time to encourage them to get to the doctors
Sundowning is just such a hard thing to deal with isn’t it and there seems to be very little you can do about it from what I’ve read and researched
The phones call are so hard aren’t they? They bring such a rollercoaster of emotions in wanting to support them but also to turn your phone off 😢 tonight I had her hysterical and frightened then 2 hours later all calm and lovely you just don’t know what you are going to get mood wise

we are looking for ways to help my dad over the phone when we are not available or already in bed. We are waiting for some information on the CHAT helpline and maybe some evening care coming in

was your mum living on her own?
 

canary

Registered User
Feb 25, 2014
15,702
0
South coast
I'm guessing that your mum is not taking any medication for anxiety. Perhaps this is something to explore as it might make the sundowning more manageable.
 

nae sporran

Volunteer Host
Oct 29, 2014
8,238
0
Bristol
Hullo and welcome @Rachel184. That is so hard to deal with for you and your dad. Have you read the https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/ advice. I appreciate it is not always easy, but hope something on there can help you. For phone helplines the Dementia Connect run by the Alzheimer's Society is very helpful. I needed to get their advice yesterday and while you may have to wait a few minutes to get through they are knowledgeable and helpful.
on 0333 150 3456

If you speak Welsh, you can call our Welsh-speaking support line on 03300 947 400.

You’ll be offered regular calls so we can keep in touch, to find out how you are and offer support and advice when things change.

Support line opening hours​

  • Monday – Wednesday 9:00am – 8:00pm
  • Thursday – Friday: 9:00am – 5:00pm
  • Saturday – Sunday: 10:00am – 4:00pm
Good luck with setting up evening care.
 

Midge155

Registered User
Jul 14, 2021
11
0
Hi thanks for the message and for sharing sorry to hear about how quickly your mum has gone downhill that sounds tough hope she is doing ok in the nursing home and settled in ok
My mum was also only diagnosed last year she has been showing symptoms for quite a while and it took us a long time to encourage them to get to the doctors
Sundowning is just such a hard thing to deal with isn’t it and there seems to be very little you can do about it from what I’ve read and researched
The phones call are so hard aren’t they? They bring such a rollercoaster of emotions in wanting to support them but also to turn your phone off 😢 tonight I had her hysterical and frightened then 2 hours later all calm and lovely you just don’t know what you are going to get mood wise

we are looking for ways to help my dad over the phone when we are not available or already in bed. We are waiting for some information on the CHAT helpline and maybe some evening care coming in

was your mum living on her own?
Hi again, yes my mam lived on her own, has been a widow for 27 years and the most independent person you could meet up until probably 3 years ago. Her phone calls were extremely stressful to me also as being her only daughter (i have 2 brothers too) she relied on me for everything. Her phone calls are still causing a problem in the nursing home but I’ve been assured that she is settling and making good friends and engaging in activities but when she phoned myself or one of my brothers she gets extremely stressed so we don’t take as many calls off her now as it is doing no one any favours. Her short term memory is that bad anyways that she completely forgets even speaking to us after a minute or 2. It’s such a horrible disease and my heart really does go out to you, your dad and of course your mum although she is most likely in her own little world and it’s you and your dad that are feeling it. 😞. Don’t hesitate to get in touch again - I’ve found this forum an immense help since my mam went into the nursing. Take care. Anita x
 

Rachel184

New member
Sep 16, 2021
6
0
I'm guessing that your mum is not taking any medication for anxiety. Perhaps this is something to explore as it might make the sundowning more manageable.
thanks for much for the comment. She is taking citalopram and is on the maximum dosage of this since last year, is there anything you think we should be asking the doctor for to help with her anxiety? The citalopram helped massively with her emotions and brought her out of a very dark place last year saying she wanted to end it all and it was all too much. Luckily we have not got back to that stage but it has definitely taking a downward spiral over the last few weeks.
 

silkiest

Registered User
Feb 9, 2017
381
0
Hi @Rachel184,
citalopram is a simple antidepressant. It may be best for the GP to review her meds, rather than adding in anti anxiety medication it would be better side effect wise to change from the citalopram to a drug that has both antidepressant and anti anxiety effects such as mirtazepine
 

Rachel184

New member
Sep 16, 2021
6
0
thank you so much for the information and taking the time to reply. My mum is 3 weeks into starting Memantine which we planned to start but it got delayed and then it was started in response to a change in her moods and emotions. We are therefore not sure what could be causing this increased need. could it simply be a decline in her illness, sundowning, a blib then heightened by the effects of the memantine. it's so hard to know. the calls were often received in an evening maybe 3-4 times a week but for the last 4 weeks we are on daily calls starting from around 4pm and it has also moved to morning calls now and mid day calls. my dad is just not coping bless him and I think he feels he would be failing if he admits this.

we are going to call the doctor and memory clinic to update them and will mention her anxiety to see if there if we can organise a review of her meds. the memory clinic is out on Wednesday anyway to review her meaentine. thank you for the anxiety suggestion.

Midge155 so glad your mum does seem to be settling in. It seems the right decision to not take the calls but it is so hard isn't it to not pick up. I have never experienced such a rollercoaster of emotions in the space of a few minutes like I do with this disease.
 

Midge155

Registered User
Jul 14, 2021
11
0
thank you so much for the information and taking the time to reply. My mum is 3 weeks into starting Memantine which we planned to start but it got delayed and then it was started in response to a change in her moods and emotions. We are therefore not sure what could be causing this increased need. could it simply be a decline in her illness, sundowning, a blib then heightened by the effects of the memantine. it's so hard to know. the calls were often received in an evening maybe 3-4 times a week but for the last 4 weeks we are on daily calls starting from around 4pm and it has also moved to morning calls now and mid day calls. my dad is just not coping bless him and I think he feels he would be failing if he admits this.

we are going to call the doctor and memory clinic to update them and will mention her anxiety to see if there if we can organise a review of her meds. the memory clinic is out on Wednesday anyway to review her meaentine. thank you for the anxiety suggestion.

Midge155 so glad your mum does seem to be settling in. It seems the right decision to not take the calls but it is so hard isn't it to not pick up. I have never experienced such a rollercoaster of emotions in the space of a few minutes like I do with this disease.
@Rachel184 hope you can get somewhere with the memory clinic on Wednesday. You’re so right it is just a rollercoaster of emotions which nothing prepares you for especially in the early stages. I have 3 young children and I found that I was having to drop them to friends/in-laws at very short notice to rush in to my mam. I took my voicemail off both my house phone and mobile phone as I was so traumatised by listening to hysterical voicemails that she wouldn’t even remember having left when I phoned her. Keep posting in this forum and reach out for help, if there’s one thing I learned it’s not to bottle things up and go it alone. The Alzheimer’s society in Ireland run an online carers course which I found so helpful as it was people the very same as myself sharing their experiences and you realise that you’re not the only one going through this awful time. Not sure if Alzheimer’s UK run the same kind of thing but I’m sure they do possibly? Anyways please let us know how you get on and Wednesday and please also take care. X
 

Kittkat

New member
Sep 20, 2021
3
0
@Rachel184 . Just talking on the phone can be very difficult for both carers and the person with dementia especially after late afternoon. I have found it easier to video chat (although my dad lives on his own and it once took 8 mins to get him to successfully remove a roll of paper towel from in front of it😅)
Try the Amazon Echo with the display maybe? That way you can always see what's going on as well. Much sympathy to you and especially your father. This disease is nothing like the smiling aged people seen drinking cups of tea on the covers of Dementia info leaflets. It's cruel and unforgiving but you are not alone x
 

Rachel184

New member
Sep 16, 2021
6
0
@Rachel184 hope you can get somewhere with the memory clinic on Wednesday. You’re so right it is just a rollercoaster of emotions which nothing prepares you for especially in the early stages. I have 3 young children and I found that I was having to drop them to friends/in-laws at very short notice to rush in to my mam. I took my voicemail off both my house phone and mobile phone as I was so traumatised by listening to hysterical voicemails that she wouldn’t even remember having left when I phoned her. Keep posting in this forum and reach out for help, if there’s one thing I learned it’s not to bottle things up and go it alone. The Alzheimer’s society in Ireland run an online carers course which I found so helpful as it was people the very same as myself sharing their experiences and you realise that you’re not the only one going through this awful time. Not sure if Alzheimer’s UK run the same kind of thing but I’m sure they do possibly? Anyways please let us know how you get on and Wednesday and please also take care. X
thanks Midge155 it does help hearing about other people's experiences, like you said realising you are not alone and sharing stories, ideas and coping methods we are trying to encourage my dad to do this too. Memory clinic visit went ok on Wednesday they are happy with how the memantine is going, they don't really want to change any other medication now to allow the memantine to settle a little more first which makes sense. Just all taking time now to get assessment done by adult social services and all the other things we need to tick of the to do list!
 

Rachel184

New member
Sep 16, 2021
6
0
@Rachel184 . Just talking on the phone can be very difficult for both carers and the person with dementia especially after late afternoon. I have found it easier to video chat (although my dad lives on his own and it once took 8 mins to get him to successfully remove a roll of paper towel from in front of it😅)
Try the Amazon Echo with the display maybe? That way you can always see what's going on as well. Much sympathy to you and especially your father. This disease is nothing like the smiling aged people seen drinking cups of tea on the covers of Dementia info leaflets. It's cruel and unforgiving but you are not alone x
thanks for the echo suggestion we will look into that, it made my chuckle about the roll of paper towels I could see something similar happening with my parents! You are so right about the cover of dementia info leaflets!!