My mother has been having twice weekly visit's from our CPN, the week before last she got very anxious, tearful and nervous at their visits. I live with Mum and always phone home at least twice a day. When I phoned home on the Tuesday she was very upset and crying she was upset by the CPN visit, on the following Friday she wouldn't even open the door to the CPN. I asked that they stop the visit's. My GP has told me to re-install the visits and not not phone Mum at home during the day, I cannot bear to hear so upset and tearful. Has anyone else had a similar problem and how do you over come this issue ? I love her too much too have her distressed and feel that the doctors and CPN's have no compasion
Not sure what to do
- Thread starter purplesadie1932
- Start date
Hi PurpleSadie
I'm so sorry you haven't had any replies to this thread you posted yesterday.
I promise you it's VERY unusual for one to "slip through the net"
I'm sorry I don't have any direct experience of the problems you have described but hopefully someone will be along soon who can help, now I've "bumped " your thread back up to the top.
I'm so sorry you haven't had any replies to this thread you posted yesterday.
I promise you it's VERY unusual for one to "slip through the net"
I'm sorry I don't have any direct experience of the problems you have described but hopefully someone will be along soon who can help, now I've "bumped " your thread back up to the top.
Purplesadie I don't really have any advice because I wouldn't know what to do either in your situation, but just wanted to say that please don't feel you are so alone and do keep posting because people here do want to help and there are lots of people with lots of good advice on the forum. I don't know why your post hasn't been answered - maybe it's just that no-one yet has read it that can offer anything practical. I myself hesitated to answer for instance, because I don't know what the answer to your specific problem is. But even if I can't answer, I can listen and offer words of comfort, and that sometimes helps too.
Take care and I hope things improve and that someone one with more experience of these things will be along soon to give you some practical advice.
Take care and I hope things improve and that someone one with more experience of these things will be along soon to give you some practical advice.
Hello purplesadie
I saw your post last evening but held back from replying in case my reply might upset you.
Do you think it`s possible you could do what the GP suggests, just to show you are being cooperative. Then if it doesn`t work at least you can say you have tried.
I found with my own mother, there came a time when phone calls increased her confusion.
I saw your post last evening but held back from replying in case my reply might upset you.
Do you think it`s possible you could do what the GP suggests, just to show you are being cooperative. Then if it doesn`t work at least you can say you have tried.
I found with my own mother, there came a time when phone calls increased her confusion.
Hi purplesadie,
I can only tell you my thoughts based on our situation and hope this may help you with this difficulty.
My Mum also hated CPN visiting but I do not think it was anything to do with the CPN but more to do with the fact that the illness made Mum upset by all visitors. In our case the CPN was a great help as the illness progressed. Not all people with Alzheimers get the access to a CPN and some might feel that this level of visiting would be a great support if they could access it.
Our CPN was professional and compasssionate.Perhaps we were lucky but I am so glad she was there.
Mum is now in a care home and I stopped phoning her as it seemed to do nothing but upset her and I felt calls were no helping either of us however I do understand that you must feel keen to phone home to see how your Mum is. Have you had any contact with a local carers group who might be able to help you with this.
Wishing you all the best.
I can only tell you my thoughts based on our situation and hope this may help you with this difficulty.
My Mum also hated CPN visiting but I do not think it was anything to do with the CPN but more to do with the fact that the illness made Mum upset by all visitors. In our case the CPN was a great help as the illness progressed. Not all people with Alzheimers get the access to a CPN and some might feel that this level of visiting would be a great support if they could access it.
Our CPN was professional and compasssionate.Perhaps we were lucky but I am so glad she was there.
Mum is now in a care home and I stopped phoning her as it seemed to do nothing but upset her and I felt calls were no helping either of us however I do understand that you must feel keen to phone home to see how your Mum is. Have you had any contact with a local carers group who might be able to help you with this.
Wishing you all the best.
When I read that I could tell you were hurting, for yourself and also on behalf of your mum. I am so sorry. I read your post yesterday and, like Sylvia, held back from replying because I didn't feel that what I could offer would be what you wanted to hear. I don't think you can prevent your mum from getting upset, it is part of the illness. Of course your first instinct was - the CPN visit upset mum, so I must stop the CPN visits.
But what if your mum gets upset over getting washed and dressed, or eating a meal - does this mean that only you can provide her care at the times you are at home? Sometimes someone with a disability needs to accept help from a support worker or medical person, even though they don't like it. The main thing is to ensure that your mum is treated with compassion and sensitive care. I was stumped in answering your post because you didn't explain why these people are lacking in compassion, so did not feel able to advise. Only you know whether the GP and nurses are kind to your mum or not.
Sadly there are so many things that can so easily upset someone with dementia, including things over which we have no control, such as post coming through the letter box, or the bin lorry arriving, or the telephone ringing. I wish we could wrap our mums in cotton wool and keep them from ever getting upset, but a sad fact of this illness is that they DO get upset and unhappy on a frequent basis, often because they feel out of control of things going on around them. However, they also forget most of these occasions very quickly, while we fret for ages about something about which they themselves have no memory.
Frequent telephone calls to your mum might have been established as a good habit but may no longer serve the useful purpose they once did. Only you can judge this. Consider the scenario of a child at school, or a relative in a care home, who can get very upset by speaking to their nearest and dearest on the phone but return to being happy a few minutes later. It's an instant emotional reaction "I want to be with you, you're not here, so I'm soooo unhappy." But then, if that person is being cared for appropriately, they can be distracted to more positive thoughts and activities. A person with dementia lives so much more in the present moment than do you or I.
I hope I'm not upsetting you be being frank, but you said TP was letting you down by people not giving you our thoughts and advice, so I have to take that risk.
All the very best, Katrine x Dear Purplesadie,
My mum used to get 1 visit from her CPN every 3 months, which used to just consist of a general chat rather more than anything else.
Your mum seems to be having a lot of visits - do you know why that would be and what the CPN might do during that time that might upset your mum?
It might also be an idea for you to be there when the CPN visits - I was sometimes able to be there, but just kept silently in the background and let the two of them converse, occasionally having some input myself. I found that useful in being able to monitor how mum was changing over that time, and to see how she presented herself to professionals. I'm sorry if you are working full time and that is not possible and I have got the wrong end of the stick.
Best wishes
My mum used to get 1 visit from her CPN every 3 months, which used to just consist of a general chat rather more than anything else.
Your mum seems to be having a lot of visits - do you know why that would be and what the CPN might do during that time that might upset your mum?
It might also be an idea for you to be there when the CPN visits - I was sometimes able to be there, but just kept silently in the background and let the two of them converse, occasionally having some input myself. I found that useful in being able to monitor how mum was changing over that time, and to see how she presented herself to professionals. I'm sorry if you are working full time and that is not possible and I have got the wrong end of the stick.
Best wishes
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I wish we could wrap our mums in cotton wool and keep them from ever getting upset, but a sad fact of this illness is that they DO get upset and unhappy on a frequent basis, often because they feel out of control of things going on around them. However, they also forget most of these occasions very quickly, while we fret for ages about something about which they themselves have no memory.
I'm afraid I agree with what the others, like Katrine, have suggested. You're likely to get more help from your GP if you at least try what he suggests.
And even if it is upsetting you, maybe you need to put a brave face on in front of your mum. If she sees you getting distressed or angry, she probably won't understand why but it's likely to compound her anxiety. That may even be what the CPN is doing, just being very matter-of-fact about things, which your mother, in her confusion, is interpreting as uncaring.
Does you mum get upset about other things on days when the CPN doesn't visit?
Thank you
Thank you all for you comments and advice. I am not upset at all by your posts, your post's have gave me a lot to think about thank you. I have tried not phoning Mum today until I was on my way home and she didn't comment or realise that I had not been in contact with her has usual. The reason why the CPN's where visiting twice a week was to get Mum used to when Social Services will visit, but because I live with Mum and look has though we are coping Social Services don't see us has though we are priority. I visited my GP last Friday she told me to start looking for a home for Mum. Her last point was less see what this winter brings your Mum will have a crisis and then she will have priority. What a cruel world we live in
Thank you all for you comments and advice. I am not upset at all by your posts, your post's have gave me a lot to think about thank you. I have tried not phoning Mum today until I was on my way home and she didn't comment or realise that I had not been in contact with her has usual. The reason why the CPN's where visiting twice a week was to get Mum used to when Social Services will visit, but because I live with Mum and look has though we are coping Social Services don't see us has though we are priority. I visited my GP last Friday she told me to start looking for a home for Mum. Her last point was less see what this winter brings your Mum will have a crisis and then she will have priority. What a cruel world we live in
Dear Purplesadie,
Thanks for coming back with an update.
I do hope that the CPN has seen what you may have been hoping s/he would to understand how things are at home and give you the help you need with your mum. It may be that seeing your mum at her worst is part of that - but I do realise that might worsen things for you both if those visits really disrupt home life by unsettling your mum.
Whilst many try to keep their loved ones at home and care for them alone, it really is incredibly difficult. It sounds as though you have been asking for help but aren't being really listened to. Yes, sadly, it often takes a crisis for that help to materialise because of the way "the system" works.
It certainly can be a cruel world, and dementia is a cruel illness. And trying to look after someone you love with it really takes everything out of you and often hurts. Sadly I just don't think the infrastructure we need is yet available in the support services that are so vital to trying to cope with this in the home to the standard needed - but don't give up trying to get what you and your mum need.
Best wishes xxx
Thanks for coming back with an update.
I do hope that the CPN has seen what you may have been hoping s/he would to understand how things are at home and give you the help you need with your mum. It may be that seeing your mum at her worst is part of that - but I do realise that might worsen things for you both if those visits really disrupt home life by unsettling your mum.
Whilst many try to keep their loved ones at home and care for them alone, it really is incredibly difficult. It sounds as though you have been asking for help but aren't being really listened to. Yes, sadly, it often takes a crisis for that help to materialise because of the way "the system" works.
It certainly can be a cruel world, and dementia is a cruel illness. And trying to look after someone you love with it really takes everything out of you and often hurts. Sadly I just don't think the infrastructure we need is yet available in the support services that are so vital to trying to cope with this in the home to the standard needed - but don't give up trying to get what you and your mum need.
Best wishes xxx
I do think that's sound advice. Forward planning puts you back in control. You may not need to take action anytime soon but if a crisis does occur, you'll have done your homework and will be in a much stronger position when you need to discuss things with social services.
