Guilt and anxiety

Artist123

Registered User
Apr 14, 2020
11
Hello, not sure where to begin to be honest. I've jut come off the phone with my Mum who has Lewy Body Dementia and is in a nursing home. She was crying and shouting again and I'm getting tired of hearing my own voice saying the usual reassuring and positive things to try and lift her spirits. The truth is, I'm not sure how much longer I can do this with no support. I've had the most horrific and heart-breaking four years, as so many have, and just feel drained. When I was able to see her, which was every other day for several hours, a lot of that time was spent trying to keep her mood at a level which didn't just descend into her begging to go home or continuous crying. It doesn't sound like much to people who haven't experienced Dementia but the accumulative effect of years of it have left me feeling a bit traumatised and sometimes feeling that there is only one way out of this for me. Mum regularly shouts at me that I promised to look after her, which I did and I did try at home for a year but just couldn't cope. I don't know what anyone could say to alleviate this awful guilt but I'm getting desperate for some consolation. I hope others are doing better. x
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,316
69
Dundee
Hello and welcome to the forum @Artist123.

I’m so sorry you’re facing such a difficult situation. It must make things so much more difficult when you can’t actually go to visit your mum.

I know you said that your promised to look after your mum - you haven’t broken your promise. You are looking after her by making sure that she is safe and secure, somewhere with more than one person to see to her needs.

It sounds as if you were/are at Carer breakdown stage. Have you contacted your own GP? If not I think it might be a good idea to see if you can get a telephone consultation and explain how you are feeling and distressed you are.

Keep posting here. You will find lots of help and support from the members of DTP.
 

lemonbalm

Registered User
May 21, 2018
410
That sounds horribly familiar @Artist123 . My mum is now in a specialist dementia care home with advanced vascular dementia. I looked after her for two years and then moved her into a care home from hospital after a stroke three years ago ("just for a while, until she got better"). I had to move her to a different care home because of "challenging behaviour"and sell her flat to pay for the care. On her bad days, she calls me a traitor and it feels like a dagger.

You are not alone! There are lots of us out there and there is support for you here. You will get plenty of advice from people who truly do understand. What do the carers say about how your mum is when you are not there or speaking to her?

Keep posting. We are listening.
 

Whisperer

Registered User
Mar 27, 2017
154
Hampshire
Hello
Welcome to this forum and I am saddened to read your comments. The advice to contact your GP given earlier is important to consider and act upon. That said there are a few suggestions which might help in the here and now.

1) Lets try and tone down the guilt monster in your thoughts. Try and give yourself some credit. You made a promise to your mum but events became to much and now your mum is where she can get continuous care at the level required. There comes a point where one carer can not deliver all the support required. That is reality not any type of measure of yourself. You gave direct support to your mum for years, allowing her to remain outside of a full time care home environment. Your efforts and sacrifices allowed that to happen. I think perhaps understandably in the moment you now find yourself you have stopped appreciating what you did do for your mum.
2) Be clear in your telephone contact with your mother the illness is speaking not your mum of old. Try to keep that point in mind, although I do not doubt such conversations are very hard.
3) You have given so much have you perhaps forgotten to hold something back for yourself? There is more than one way forward for yourself, please believe that. Do you have any relatives or friends you can speak to? Alternatively contact the Alzheimer’s Society help line. You have value yourself as a person. You have tried your hardest to help your mum, but that cannot come at the cost of you losing sight of yourself as a human being. I do not say this glibly but you need to pause for a moment and just think what you have done for you mother in recent years. You have not failed. Dementia as an illness will just keeps taking. You have reached the point when you must think about yourself. Contacting your GP, a help line, friends and family, none of that is weakness it is accepting they can help you.

It is hard to offer support over a forum like this as all I can do is send words. As earlier said to you please keep posting. most importantly do not judge yourself by how others appear to be doing. No one wishes to be a carer we would much prefer our loved ones were well. We all have different personalities, skills, experiences and tread different roads in terms of the caring we do. Your situation is unique, you are unique. It is time to start appreciating what you have done, what it has cost you emotionally, physically, etc, stop the music of guilt in your head and put yourself first. Please take care and be gentle with yourself.
 

imthedaughter

Registered User
Apr 3, 2019
362
You can and should speak to your GP but I would recommend also self referring to mental health services, which you should be able to do even without seeing the GP.

I did this last year when I felt my self confidence was so low and my self loathing so high that it was affecting my work. I too felt a lot of guilt for not doing more, and Dad combined with other family members having health issues, plus challenging work in my career, just got too much. They put me on a stress management course and because it was online the waiting list wasn't too bad. I do think it has helped, even though I didn't really think it would.

See it as something you can do for yourself, like exercise or eating well. Your mental health is just as important.
 

kindred

Registered User
Apr 8, 2018
2,458
Hello, not sure where to begin to be honest. I've jut come off the phone with my Mum who has Lewy Body Dementia and is in a nursing home. She was crying and shouting again and I'm getting tired of hearing my own voice saying the usual reassuring and positive things to try and lift her spirits. The truth is, I'm not sure how much longer I can do this with no support. I've had the most horrific and heart-breaking four years, as so many have, and just feel drained. When I was able to see her, which was every other day for several hours, a lot of that time was spent trying to keep her mood at a level which didn't just descend into her begging to go home or continuous crying. It doesn't sound like much to people who haven't experienced Dementia but the accumulative effect of years of it have left me feeling a bit traumatised and sometimes feeling that there is only one way out of this for me. Mum regularly shouts at me that I promised to look after her, which I did and I did try at home for a year but just couldn't cope. I don't know what anyone could say to alleviate this awful guilt but I'm getting desperate for some consolation. I hope others are doing better. x
You are not a human sacrifice, although the pathology of this disease almost requires this of us. I know because it all but broke me. I volunteer at the nursing home where my husband died and when families were allowed in, I saw this pattern all the time and the devastating effect. you have given so much, please don’t allow this to take your health. Better times will come, you sound a loving and caring person, please allow yourself some of that care. warmest and welcome here, Kindred.
 

TNJJ

Registered User
May 7, 2019
1,605
cornwall
Hello, not sure where to begin to be honest. I've jut come off the phone with my Mum who has Lewy Body Dementia and is in a nursing home. She was crying and shouting again and I'm getting tired of hearing my own voice saying the usual reassuring and positive things to try and lift her spirits. The truth is, I'm not sure how much longer I can do this with no support. I've had the most horrific and heart-breaking four years, as so many have, and just feel drained. When I was able to see her, which was every other day for several hours, a lot of that time was spent trying to keep her mood at a level which didn't just descend into her begging to go home or continuous crying. It doesn't sound like much to people who haven't experienced Dementia but the accumulative effect of years of it have left me feeling a bit traumatised and sometimes feeling that there is only one way out of this for me. Mum regularly shouts at me that I promised to look after her, which I did and I did try at home for a year but just couldn't cope. I don't know what anyone could say to alleviate this awful guilt but I'm getting desperate for some consolation. I hope others are doing better. x
Hi. There is only so much one person can do. I gave up my job to look after dad with the help of carers. I didn’t live with him. I occasionally got some phone calls in the beginning of his dementia but he is further along now.
Like all of us on this forum the guilt monster was about.
When I got to the stage of feeling really down and just wanted to be anywhere but with him I stepped back.I felt like just going and never coming back. I had to step back from the situation or else I would never have survived.
What about restricting the phone calls and letting it go to the answer phone??
Also maybe not see your mum every other day in the home.
Spend some time for you doing what you want. Not easy I know .
 

canary

Registered User
Feb 25, 2014
12,907
South coast
When I was able to see her, which was every other day for several hours, a lot of that time was spent trying to keep her mood at a level which didn't just descend into her begging to go home or continuous crying.
Hello @Artist123

Im getting the feeling that your visiting and phoning have been mostly done because the guilt monster has been whispering in your ear that you aught to do this and not phoning/visiting so often/so long is a betrayal. Well, Id like to tell you that its not true. Your mum mum is being looked after and kept safe and this will happen whether or not you contact her. Also, remember that her experience of time is not the same as yours. There was an occasion when I was unable to visit mum for a couple of months and when I went back she had absolutely no idea that it was that long - she thought it was just a couple of days. Equally my OH went to visit his mum in her care home and met his brother going out having also visited his mum. When OH found his mum she swore blind that no-one ever came to visit her and she hadnt seen anyone for months!

Sometimes it is impossible to make the person with dementia happy, so you just have to do what is right for you and if that means not phoning so much and keeping the calls short and sweet and then when you can visit again only visiting for an hour once a week, then thats fine.
 

jennifer1967

Registered User
Mar 15, 2020
348
im not as experienced as others but you cared for your mum very well and are still caring for her. hope i not speaking out of turn but you now need to look after yourself which in turn will help your mum by not being so anxious and stress and be able to enjoy your visits when you can and phone calls with your mum if that makes sense. phone your doctor is good call. mine is absolutely brilliant and thats what they are there for take good care of yourself we are all here
 

Artist123

Registered User
Apr 14, 2020
11
Hello, thank you for your support. I think that's the thing, I like to make things better for people but with Dementia it's very hard to do that, it's very hard to make Mum happy. It is guilt that makes me visit so much and I feel so guilty because I feel responsible for the fall that led to the hip operation. There were signs of early stage Dementia before but she went into the operation saying she would do anything for me and came out yelling that I had stolen all her money. It was that dramatic a change and I don't think I've recovered from the shock. Because she seemed to accelerate through the early stages, she appears completely unaware of her condition, maybe everyone is? It also means that I don't feel like I've ever had the chance to say sorry and for her maybe to forgive me. I suppose that's why sometimes I feel that the only way to justify what happened and provide a reason as to why I couldn't care for her is if something happened to me. I feel like I stole years of her life that might otherwise have been reasonably enjoyable. I understand that this is a really unhealthy way to think and I need to break this negative cycle of emotions. She's just such a lovely woman and didn't deserve this. I do feel like a traitor, you're right, I don't have children or a family or a career I love and so it seems wrong to not care for her full time. I do want a life though, I've had a really bad run over the last ten years or so and have seen everyone else I know get all the things that you might want and expect from life. I do have friends I could talk to but I suppose the two people I should have been able to rely upon most have essentially left me to it, either by walking away altogether or just not being very supportive, I don't want to be someone people avoid. Friends do try to understand but most people seem blessed with more logical or practical thought processes than me who just seems to lurch from one emotion to another with very little perspective. You're right I do try to remember when speaking to Mum on the phone that sometimes it's just the illness speaking but the worst of it is I am forgetting what a selfless, loving Mum she was. I'm forgetting her even though she is right in front of my eyes and that feels disloyal too. Just writing this has made me realise that I have an awful lot of issues to sort out and yes, I will contact the mental health services and hopefully soon may get to speak to someone face to face, I'm not good on the phone. Thanks ever so much for replying, I feel a bit overwhelmed by kindness. x
 

Artist123

Registered User
Apr 14, 2020
11
Hello and welcome to the forum @Artist123.

I’m so sorry you’re facing such a difficult situation. It must make things so much more difficult when you can’t actually go to visit your mum.

I know you said that your promised to look after your mum - you haven’t broken your promise. You are looking after her by making sure that she is safe and secure, somewhere with more than one person to see to her needs.

It sounds as if you were/are at Carer breakdown stage. Have you contacted your own GP? If not I think it might be a good idea to see if you can get a telephone consultation and explain how you are feeling and distressed you are.

Keep posting here. You will find lots of help and support from the members of DTP.
Thank you, I did go to my G.P but was just given sleeping tablets, Maybe I'll try again. Thanks again
 

Artist123

Registered User
Apr 14, 2020
11
That sounds horribly familiar @Artist123 . My mum is now in a specialist dementia care home with advanced vascular dementia. I looked after her for two years and then moved her into a care home from hospital after a stroke three years ago ("just for a while, until she got better"). I had to move her to a different care home because of "challenging behaviour"and sell her flat to pay for the care. On her bad days, she calls me a traitor and it feels like a dagger.

You are not alone! There are lots of us out there and there is support for you here. You will get plenty of advice from people who truly do understand. What do the carers say about how your mum is when you are not there or speaking to her?

Keep posting. We are listening.
Thank you for your reply, I hope you are coping with it all. The staff say that she is better when I'm there although, as a reminder of home, I think I often upset her too. It's so difficult to know what the best thing to do is. That must have been difficult to move your Mum, I hope you're okay. Thank you again
 

canary

Registered User
Feb 25, 2014
12,907
South coast
I do have friends I could talk to but I suppose the two people I should have been able to rely upon most have essentially left me to it, either by walking away altogether or just not being very supportive, I don't want to be someone people avoid.
I think we all understand this. As lovely and supportive as people may be, if they have never been in this situation, they have no idea what it is like.

This is one of the wonderful things about this forum - you can let rip and no-one will judge you. You can say what its actually like for you and get support here, so you dont have to tell the friends who wont understand
xx
 

Artist123

Registered User
Apr 14, 2020
11
Hello
Welcome to this forum and I am saddened to read your comments. The advice to contact your GP given earlier is important to consider and act upon. That said there are a few suggestions which might help in the here and now.

1) Lets try and tone down the guilt monster in your thoughts. Try and give yourself some credit. You made a promise to your mum but events became to much and now your mum is where she can get continuous care at the level required. There comes a point where one carer can not deliver all the support required. That is reality not any type of measure of yourself. You gave direct support to your mum for years, allowing her to remain outside of a full time care home environment. Your efforts and sacrifices allowed that to happen. I think perhaps understandably in the moment you now find yourself you have stopped appreciating what you did do for your mum.
2) Be clear in your telephone contact with your mother the illness is speaking not your mum of old. Try to keep that point in mind, although I do not doubt such conversations are very hard.
3) You have given so much have you perhaps forgotten to hold something back for yourself? There is more than one way forward for yourself, please believe that. Do you have any relatives or friends you can speak to? Alternatively contact the Alzheimer’s Society help line. You have value yourself as a person. You have tried your hardest to help your mum, but that cannot come at the cost of you losing sight of yourself as a human being. I do not say this glibly but you need to pause for a moment and just think what you have done for you mother in recent years. You have not failed. Dementia as an illness will just keeps taking. You have reached the point when you must think about yourself. Contacting your GP, a help line, friends and family, none of that is weakness it is accepting they can help you.

It is hard to offer support over a forum like this as all I can do is send words. As earlier said to you please keep posting. most importantly do not judge yourself by how others appear to be doing. No one wishes to be a carer we would much prefer our loved ones were well. We all have different personalities, skills, experiences and tread different roads in terms of the caring we do. Your situation is unique, you are unique. It is time to start appreciating what you have done, what it has cost you emotionally, physically, etc, stop the music of guilt in your head and put yourself first. Please take care and be gentle with yourself.
Thank you so much for taking the time to reply. It's so good to be reminded that the decisions we make and the actions we take are done with the best intentions and I do think I need to be reminded of this You're so right that we all tread different paths. Thank you again, I hope you're well
 

Artist123

Registered User
Apr 14, 2020
11
You can and should speak to your GP but I would recommend also self referring to mental health services, which you should be able to do even without seeing the GP.

I did this last year when I felt my self confidence was so low and my self loathing so high that it was affecting my work. I too felt a lot of guilt for not doing more, and Dad combined with other family members having health issues, plus challenging work in my career, just got too much. They put me on a stress management course and because it was online the waiting list wasn't too bad. I do think it has helped, even though I didn't really think it would.

See it as something you can do for yourself, like exercise or eating well. Your mental health is just as important.
Thank you so much for replying, I hope you're feeling a little better and so glad that the stress management course helped. Thank you again
 

Artist123

Registered User
Apr 14, 2020
11
You are not a human sacrifice, although the pathology of this disease almost requires this of us. I know because it all but broke me. I volunteer at the nursing home where my husband died and when families were allowed in, I saw this pattern all the time and the devastating effect. you have given so much, please don’t allow this to take your health. Better times will come, you sound a loving and caring person, please allow yourself some of that care. warmest and welcome here, Kindred.
Thank you so much for your reply, that is exactly how I feel sometimes and so sorry that you felt the same way. Thanks so much for your suport
 

Artist123

Registered User
Apr 14, 2020
11
Hi. There is only so much one person can do. I gave up my job to look after dad with the help of carers. I didn’t live with him. I occasionally got some phone calls in the beginning of his dementia but he is further along now.
Like all of us on this forum the guilt monster was about.
When I got to the stage of feeling really down and just wanted to be anywhere but with him I stepped back.I felt like just going and never coming back. I had to step back from the situation or else I would never have survived.
What about restricting the phone calls and letting it go to the answer phone??
Also maybe not see your mum every other day in the home.
Spend some time for you doing what you want. Not easy I know .
Thank you for your reply, yes you're right, I think after this period of separation due to Covid I will be forced to reduce visiting times which may be good although difficult. Thanks ever so much for your reply, I hope you're well and your Dad is too
 

Artist123

Registered User
Apr 14, 2020
11
Hello @Artist123

Im getting the feeling that your visiting and phoning have been mostly done because the guilt monster has been whispering in your ear that you aught to do this and not phoning/visiting so often/so long is a betrayal. Well, Id like to tell you that its not true. Your mum mum is being looked after and kept safe and this will happen whether or not you contact her. Also, remember that her experience of time is not the same as yours. There was an occasion when I was unable to visit mum for a couple of months and when I went back she had absolutely no idea that it was that long - she thought it was just a couple of days. Equally my OH went to visit his mum in her care home and met his brother going out having also visited his mum. When OH found his mum she swore blind that no-one ever came to visit her and she hadnt seen anyone for months!

Sometimes it is impossible to make the person with dementia happy, so you just have to do what is right for you and if that means not phoning so much and keeping the calls short and sweet and then when you can visit again only visiting for an hour once a week, then thats fine.
Thank you so much for your reply, you really hit the nail on the head. I do need to remember that her sense of reality is not the same as it was and I should try and accept this new reality too. Thank you so much again
 

Artist123

Registered User
Apr 14, 2020
11
im not as experienced as others but you cared for your mum very well and are still caring for her. hope i not speaking out of turn but you now need to look after yourself which in turn will help your mum by not being so anxious and stress and be able to enjoy your visits when you can and phone calls with your mum if that makes sense. phone your doctor is good call. mine is absolutely brilliant and thats what they are there for take good care of yourself we are all here
Thank you so much for your reply, you're absolutely right and I think I need to approach the G.P again. I hope you're okay, thanks again
 

jennifer1967

Registered User
Mar 15, 2020
348
Thank you so much for your reply, you're absolutely right and I think I need to approach the G.P again. I hope you're okay, thanks again
might be worth seeing another gp in the practice if you dont find them helpful. some are better than others with stress and mental illness. and please stop putting yourself down and feeling guilty for everything. accidents happen and cant wrap her up in cotton wool.