Edge of danger

[Splashing About]

I identify with this as well. Not being able to enjoy activities (in case they were curtailed), frightened to plan nice things (cancelled last minute), couldn’t be separated from my phone (I’d miss a call), expecting bad news all the time....I could go on.

It got really bad one year and I took a holiday against my gut instinct. It was great. A completely different location, change of scene and I reset my head.

 

[Starbright]

I feel this too @kindred...do you think it’s all part of this whole nightmare (( sometimes)))we as carers find ourselves in.. I’m always waiting for the next crisis /hallucination /angry outburst and sometimes aggression. Having a word with your gp is good advice as has been said.

your posts have helped me on many occasions so thank so much. Do take care ((( Hugs)))) A x

 

[kindred]

I identify with this as well. Not being able to enjoy activities (in case they were curtailed), frightened to plan nice things (cancelled last minute), couldn’t be separated from my phone (I’d miss a call), expecting bad news all the time....I could go on.

It got really bad one year and I took a holiday against my gut instinct. It was great. A completely different location, change of scene and I reset my head.

Oh thank you. It is so helpful to know that others have this as well. I do agree about a change of location and scene or even experience. with love, Geraldinex

 

[kindred]

I feel this too @kindred...do you think it’s all part of this whole nightmare (( sometimes)))we as carers find ourselves in.. I’m always waiting for the next crisis /hallucination /angry outburst and sometimes aggression. Having a word with your gp is good advice as has been said.

your posts have helped me on many occasions so thank so much. Do take care ((( Hugs)))) A x

Oh yes, thank you, it is part of the whole nightmare and the excess of responsibility. Thank you for your lovely words about my posts. I think my beloved Keith was particularly destructive (opposite to his usual constructive self …) and I had to handle so many domestic emergencies and am still repairing things even now. I have not heard a lot about this kind of destruction on here. It got me to the point where every flicker of light meant another fuse, every shadow was a wet patch … oh you know …
Thank you so much for your sharing. with love, Geraldinexx

 

[Splashing About]

Can you take a short break and go somewhere away...to friends, with friends?

 

[nellbelles]

According to my GP this is what we are doing!
https://www.medicalnewstoday.com/articles/320844.php
Wish I knew how to stop it anti anxiety medication takes the edge off but I’ve not found a way to stop it..
Am open to suggestions

 

[kindred]

Can you take a short break and go somewhere away...to friends, with friends?

Thank you, not really at the moment, owing to needing to work right up to Christmas but I do have lots of little breaks with close friends. I'm really pretty grounded, and I don't quite know what made me burst onto here with this business but I obey my instincts and I am so glad I did, it's so healing to find out how not alone I am! Thank you so much. with love, Geraldinexx

 

[Splashing About]

https://www.nhs.uk/apps-library/category/mental-health/
That’s a link to some NHS apps

Worth exploring

 

[kindred]

According to my GP this is what we are doing!
https://www.medicalnewstoday.com/articles/320844.php
Wish I knew how to stop it anti anxiety medication takes the edge off but I’ve not found a way to stop it..
Am open to suggestions

Well, yes, I suppose we are catastrophising, BUT what happens when one dreads the worst and then it frequently happens! It is a lot more complicated than catastrophising. I think only an accumulation of positive experience stops catastrophising and when we are in the middle of caring for someone with dementia this is not very likely!! In fact, the reverse is true. I think this dementia carer anxiety should be recognised as a separate mental health condition and given a higher profile. It really is good to talk about it like this, thank you.
with love, Geraldinex

 

[kindred]

https://www.nhs.uk/apps-library/category/mental-health/
That’s a link to some NHS apps

Worth exploring

Very many thanks. Whatever they come up with, I am finding this talking on here the most healing thing I have done, apart from talks with the GP. with love, Geraldinexx It is so wondrous that I am getting all this response and so many people share this feeling, and want tohelp.

 

[Lirene]

Being a carer is definitely a separate mental health condition!
I have today been to see my mum in a nursing home where she has been for the past 11 years with Alzheimer’s and various other conditions, she has no idea who I am now. Over the years with her I have been made to feel the worst daughter, most uncaring person and shouted at most days and totally ignored at others, and I still have guilt feelings even now for putting her in there.
My husband was diagnosed 13 years ago but had Parkinson’s symptoms years before so I have been caring for him. So after mum , I then went to hospital 3/4 of an hour each way, to see my husband who now has advanced Parkinson’s, dementia, psychosis, paranoia and hallucinations! He also has broken his hip for the 2nd time (same hip) and he is unable to undergo any further surgery.
I have been bullied, shouted at and made to feel completely worthless. My husband thinks I am the worst wife in the world.I honestly cannot repeat some of the things-he has said and allegations he has made.
I feel like a ball on a pinball machine being knocked from pillar to post.
What about a little caring for us carers?
Love and hugs xx

 

[Sunshine2*]

Being a carer is definitely a separate mental health condition!
I have today been to see my mum in a nursing home where she has been for the past 11 years with Alzheimer’s and various other conditions, she has no idea who I am now. Over the years with her I have been made to feel the worst daughter, most uncaring person and shouted at most days and totally ignored at others, and I still have guilt feelings even now for putting her in there.
My husband was diagnosed 13 years ago but had Parkinson’s symptoms years before so I have been caring for him. So after mum , I then went to hospital 3/4 of an hour each way, to see my husband who now has advanced Parkinson’s, dementia, psychosis, paranoia and hallucinations! He also has broken his hip for the 2nd time (same hip) and he is unable to undergo any further surgery.
I have been bullied, shouted at and made to feel completely worthless. My husband thinks I am the worst wife in the world.I honestly cannot repeat some of the things-he has said and allegations he has made.
I feel like a ball on a pinball machine being knocked from pillar to post.
What about a little caring for us carers?
Love and hugs xx

 

[Sunshine2*]

Always remember that you are a strong, kind, caring and wonderful daughter and wife! Best wishes.

 

[Lirene]

Thank you so much xx

 

[Bunpoots]

@ kindred I recognise the feelings you describe. It's horrible while they're there but in my case they lessen as time goes by.


It's 10 months since my dad died and it is getting better although I'm not over the trauma yet.

Stay strong. It will pass

 

[charlie10]

OH yes Kindred.....I think catastrophising must be my middle name! I'm not really a handson carer for a pwd, and it's my FiL , we're not very close, but I have a (now adult) child with MH problems..... a few years ago we had frequent late night phone calls which involved ambulances and dashes to A&E. Thank goodness it has all calmed down over the last few years, haven't had to do that for a long time, but even so my heart still thuds when I hear the phone ring and I constantly have a 'feeling' in the back of my mind.....this extends to everyone I care for, intermittently (they take turns on my worry list!) and I have to give myself a stern talking to Keep thinking I ought to learn to meditate.....

I'm sorry so many others also have this mindworm.....comforting as it is to find you're not the only one, I wouldn't wish it on anyone either

 

[Joyt]

Well, yes, I suppose we are catastrophising, BUT what happens when one dreads the worst and then it frequently happens! It is a lot more complicated than catastrophising. I think only an accumulation of positive experience stops catastrophising and when we are in the middle of caring for someone with dementia this is not very likely!! In fact, the reverse is true. I think this dementia carer anxiety should be recognised as a separate mental health condition and given a higher profile. It really is good to talk about it like this, thank you.
with love, Geraldinex

I absolutely agree with this. There is so little help for carers mental health in the aftermath of the disease. Once the carers job is done there is an assumption that life is ok again. I wish.....

 

[Joyt]

I should add too, that someone told me recently that they only regained their loved one after they died, and they were very grateful for that. Up to that point the illness ruled and got in the way.

 

[Joyt]

Oh yes, thank you, it is part of the whole nightmare and the excess of responsibility. Thank you for your lovely words about my posts. I think my beloved Keith was particularly destructive (opposite to his usual constructive self …) and I had to handle so many domestic emergencies and am still repairing things even now. I have not heard a lot about this kind of destruction on here. It got me to the point where every flicker of light meant another fuse, every shadow was a wet patch … oh you know …
Thank you so much for your sharing. with love, Geraldinexx

Oh yes to the ‘helpful’ DIY and the damp patches. The day I found petrol all over the garage, and a fixated loop on bonfires was a particular low point. A friend described it as like having a toddler with a chainsaw. Yep.

 

[Dare]

After 2 years caring free - I am still in that 24/7 mode of being “on call’. Don’t sleep more than 3 hrs at any one time - after 27 years of caring my body can’t get used to not waking every other hour! When a text or phone call - I go into hyper alert - till see it’s a friend etc! One day it will settle till then I’m being kind to myself over my quirks