Please don't throw me away, breaking my promise

[carolynp]

The guilt is so interesting. I agree with what’s been said, and with @Lindy50 in particular. My only other thought is to wonder whether guilt is our default emotion.

The rage, fury, frustration at our situation as carers, and the inadequacy of official help and even of family and friends to relieve the burden, or even to listen actively (as distinct from telling us about their grandmothers) are feelings that become so extreme we might explode with the force of them. So is it possible that we subconsciously choose instead to swallow those feelings, and convert them into self blame and guilt?

And we are so exhausted from the 24/7, whether or not the PWD is with us or in care, that we can’t get our heads above water long enough to step back and detach. So the guilt rolls on and feeds on itself. Years ago my therapist called it a useless emotion and it’s so true.

Can I say a special thanks, too, Geraldine, for the idea of holding up a stop hand when acquaintances start their (inappropriate, thoughtless, uncaring) dementia stories? I’m going to use that! @kindred

 

[carolynp]

T

Thank you darling, greatly appreciated. Thing is, I have worked with folk who have cared for others with all manner of terminal illnesses and nothing does the guilt thing as much as dementia. There has to be something in the dynamic ... something in the fact we keep trying in hope, only to be dashed, so perhaps we haven't found the right way etc etc. I would so love to know. Yes, it does honour the depth of our love and that is something profound, you are so right. Thank you with all heart, it is so lovely talking to you and perhaps someone else can come up with an explanation. Love and best, rain here!! Geraldine, well a bit xxx

Thanks for sharing your professional experience with guilt, Honey, it is very helpful. I think with dementia the person is unwittingly such a bottomless pit of endless need. Try as we might we cannot fill it. So the guilt is an inevitable concomitant perhaps of the caring.

 

[Jezzer]

Good morning Geraldine!
Firstly, some excellent input concerning guilt from @Lindy50 and @carolynp . I think the three of you have pretty much provided that wise explanation you mentioned. Carolyn it certainly is a useless emotion but, boy does it get to and drain us eh? G, is it any cooler after the rain? We had no rain and it's still pretty oppressive here. As always, I wish you a good visit with Keith and I wonder what tales you may have to tell today! I'll be visiting mum a bit later today. We have a "Meet the new Manager meeting" at 2pm. That should be interesting. Take care all. With Much Love as always Jan xxxx

 

[kindred]

Do you think it's because dementia robs our loved ones of their minds? Watching someone descend into this helplessness? Time and time again folk - including myself - come on TP and say how seeing this tears them apart, that they can hardly stand it. And when we go home, we are leaving them in the hands of other people, albeit people we trust? Even though I know it would be impossible - that thought "could I manage to look after mum at home"? - creeps back. Of course I couldn't, such are her health problems on top of the dementia. I don't know. You have rain? Is it cooling at all? We do need rain. Hope you are able to relax this evening. Take Care. With Love xxx

Good morning darling and thank you. Yes, I do agree about watching someone descend like this. And oh yes about thta thought that we could have looked after them for longer at home. No we could not and heaven knows what it will be like in the future for folk if nothing drastic is done to help. I think Amy said in a recent post that what is right for dementia feels wrong to us (in terms of what we have to do). I wonder if this holds the key to the guilt? all my love, so grateful to you for being there darling Jan. Geraldinexxxx

 

[kindred]

@kindred what a great visit I'm so pleased you were able to chat to Keith (and to the carers) like that.

Re the guilt issue, as @Jezzer says, I think it's our loved ones' helplessness that makes it so difficult to let others care for them. Also we know that when things don't go well, as happens from time to time, they won't necessarily understand why themselves, let alone be able to tell us the problem. So we feel necessarily 'on watch' even when those we love are receiving 24/7 care.

Also, people who are physically ill may want their loved ones to stay with them, but at least they generally know they're ill......our poor loved ones can't understand why life isn't as it was, or that they aren't able to look after themselves.

No wonder so many of us feel we should be with them for reassurance and companionship, if nothing else....

Love,
Lindy xx

Oh darling yes, what a beautiful, wise post. Companionship and reassurance, yes of course. Thankyou with all heart. It is so good to talk about this. all love, Geraldinexxxx

 

[kindred]

The guilt is so interesting. I agree with what’s been said, and with @Lindy50 in particular. My only other thought is to wonder whether guilt is our default emotion.

The rage, fury, frustration at our situation as carers, and the inadequacy of official help and even of family and friends to relieve the burden, or even to listen actively (as distinct from telling us about their grandmothers) are feelings that become so extreme we might explode with the force of them. So is it possible that we subconsciously choose instead to swallow those feelings, and convert them into self blame and guilt?

And we are so exhausted from the 24/7, whether or not the PWD is with us or in care, that we can’t get our heads above water long enough to step back and detach. So the guilt rolls on and feeds on itself. Years ago my therapist called it a useless emotion and it’s so true.

Can I say a special thanks, too, Geraldine, for the idea of holding up a stop hand when acquaintances start their (inappropriate, thoughtless, uncaring) dementia stories? I’m going to use that! @kindred

Thank you, it's a technique I use in my professional life, I say if I ask anything that is too painful, just put your hand up to stop me. It puts people in control and reassures them and it also SHUTS UP people who have to tell us their dementia stories ...
That is so interesting about guilt being our default emotion. Yes, you are right. And so it consumes us. It is a useless emotion.
I often feel like going out into the street and shouting WHY DOESN'T ANYONE HELP US?? So good to talk to you. Love and best, Geraldinexx

 

[kindred]

T

Thanks for sharing your professional experience with guilt, Honey, it is very helpful. I think with dementia the person is unwittingly such a bottomless pit of endless need. Try as we might we cannot fill it. So the guilt is an inevitable concomitant perhaps of the caring.

Oh yes, a complete black hole of need, consuming everything. Gxxx

 

[margherita]

What all of you say about feeling guilty is very interesting.
I haven't felt guilty so far. I feel responsible for my husband, but not guilty about him.
Why should I feel guilty?
Because I do not want to have my life utterly spoilt by his dementia?
Because I do not want to be dead before I actually die?
I think I will be willing to delegate someone else ( a paid carer or a care home) to look after OH when he needs it.
Once he is well cared for, why shouldn't I enjoy breaths of fresh air with deep relief and a lighter soul?

 

[kindred]

Good morning Geraldine!
Firstly, some excellent input concerning guilt from @Lindy50 and @carolynp . I think the three of you have pretty much provided that wise explanation you mentioned. Carolyn it certainly is a useless emotion but, boy does it get to and drain us eh? G, is it any cooler after the rain? We had no rain and it's still pretty oppressive here. As always, I wish you a good visit with Keith and I wonder what tales you may have to tell today! I'll be visiting mum a bit later today. We have a "Meet the new Manager meeting" at 2pm. That should be interesting. Take care all. With Much Love as always Jan xxxx

Oh yes, good morning, and I do agree that guilt it getting a brilliant airing and analysis. This is so good. Nah, rain lasted one minute. And as you say, oppressive. We shall have tales to tell later and I do hope the meet the new manager goes well darling, very interested! all my love and thanks, Geraldinexxxx

 

[kindred]

What all of you say about feeling guilty is very interesting.
I haven't felt guilty so far. I feel responsible for my husband, but not guilty about him.
Why should I feel guilty?
Because I do not want to have my life utterly spoilt by his dementia?
Because I do not want to be dead before I actually die?
I think I will be willing to delegate someone else ( a paid carer or a care home) to look after OH when he needs it.
Once he is well cared for, why shouldn't I enjoy breaths of fresh air with deep relief and a lighter soul?

Oh so good to hear from you. I think guilty is that strange feeling of being in the wrong and frightened all the time. I like it when you say you feel responsible but not guilty. You are right, and I am hoping one day to get those wonderful deep breaths, too. Thank you. with love, Geraldinexx

 

[margherita]

Oh yes, a complete black hole of need, consuming everything.

Hi Geraldine,
we are powerless over that black hole.
We can't fill it, just like we "can't empty the sea with a teaspoon" (free translation from an Italian saying).
Years ago my therapist used to tell me I can feel responsible ( and, as a consequence, guilty) only for what depends on me.
She also warned me from thinking I was responsible for whatever happened either to me or other people, because that was a dangerous sense of omnipotence.
Do you think I am only hiding my incurable selfishness?

 

[Jezzer]

Hi

What all of you say about feeling guilty is very interesting.
I haven't felt guilty so far. I feel responsible for my husband, but not guilty about him.
Why should I feel guilty?
Because I do not want to have my life utterly spoilt by his dementia?
Because I do not want to be dead before I actually die?
I think I will be willing to delegate someone else ( a paid carer or a care home) to look after OH when he needs it.
Once he is well cared for, why shouldn't I enjoy breaths of fresh air with deep relief and a lighter soul?

Hi Geraldine,
we are powerless over that black hole.
We can't fill it, just like we "can't empty the sea with a teaspoon" (free translation from an Italian saying).
Years ago my therapist used to tell me I can feel responsible ( and, as a consequence, guilty) only for what depends on me.
She also warned me from thinking I was responsible for whatever happened either to me or other people, because that was a dangerous sense of omnipotence.
Do you think I am only hiding my incurable selfishness?

What all of you say about feeling guilty is very interesting.
I haven't felt guilty so far. I feel responsible for my husband, but not guilty about him.
Why should I feel guilty?
Because I do not want to have my life utterly spoilt by his dementia?
Because I do not want to be dead before I actually die?
I think I will be willing to delegate someone else ( a paid carer or a care home) to look after OH when he needs it.
Once he is well cared for, why shouldn't I enjoy breaths of fresh air with deep relief and a lighter soul?

Hi @margherita
You are quite right that you have no need to feel guilty. None of us do. Nevertheless I don't find it that simple. Mum is in a CH receiving excellent care. I did all I could to care for her at home until I was physically, as well as emotionally, unable to do so. Why then am I so affected with guilt? Has my life been utterly spoilt by her illness? No. Am I dead already? No. Am I different now? Yes, without doubt. A lighter soul? No. I am an individual, deeply flawed and with my own story, just as we all do. Am I full of self pity? No. It is what it is.
Thanks for sharing your take on guilt
Best, J

 

[kindred]

Hi Geraldine,
we are powerless over that black hole.
We can't fill it, just like we "can't empty the sea with a teaspoon" (free translation from an Italian saying).
Years ago my therapist used to tell me I can feel responsible ( and, as a consequence, guilty) only for what depends on me.
She also warned me from thinking I was responsible for whatever happened either to me or other people, because that was a dangerous sense of omnipotence.
Do you think I am only hiding my incurable selfishness?

Oh my darling girl. A dangerous sense of omnipotence. Heavy stuff. Not sure I've got that. I think if we have any power it is in deciding how much we will let go near the black hole and how much we will keep back, how many teaspoonfuls we will take from the sea. We need to be whole narrative, Dementia must not be the only story we have to tell. What do you think? with love, this is is so interesting, Geraldinexx

 

[kindred]

Hi




Hi @margherita
You are quite right that you have no need to feel guilty. None of us do. Nevertheless I don't find it that simple. Mum is in a CH receiving excellent care. I did all I could to care for her at home until I was physically, as well as emotionally, unable to do so. Why then am I so affected with guilt? Has my life been utterly spoilt by her illness? No. Am I dead already? No. Am I different now? Yes, without doubt. A lighter soul? No. I am an individual, deeply flawed and with my own story, just as we all do. Am I full of self pity? No. It is what it is.
Thanks for sharing your take on guilt
Best, J

Oh Jan. I know, I know. I'm different too. More anon. all my love, Gxxx

 

[Jezzer]

Oh Jan. I know, I know. I'm different too. More anon. all my love, Gxxx

Have I interpreted this wrongly? Quite possibly. It just brought back the shock and disbelief at being told "your mum's being looked after so enjoy yourself". Because of my health concerns I'm rather over-sensitive at the moment. I'm definitely confused. With Love Jan xxx

 

[kindred]

Have I interpreted this wrongly? Quite possibly. It just brought back the shock and disbelief at being told "your mum's being looked after so enjoy yourself". Because of my health concerns I'm rather over-sensitive at the moment. I'm definitely confused. With Love Jan xxx

Say more about confusion when can. Not sure what mean and want to know! And all sympathy about your health concerns. No, I can't just go off an enjoy myself either. and it is actually more important to me to continue to be with Keith than to go and enjoy myself whatever that means. I am enjoying myself when Keith is responsive. Dear God, what else am I for ...say more when can darling. Off to Keith now and you will see your mum and we will confer. Gxxxx

 

[Jezzer]

Say more about confusion when can. Not sure what mean and want to know! And all sympathy about your health concerns. No, I can't just go off an enjoy myself either. and it is actually more important to me to continue to be with Keith than to go and enjoy myself whatever that means. I am enjoying myself when Keith is responsive. Dear God, what else am I for ...say more when can darling. Off to Keith now and you will see your mum and we will confer. Gxxxx

May I PM you? Thanks Jan xx

 

[Scouts girl]

Oh the overwhelming guilt that absorbs us. Even though I lost my lovely mum nearly 8 months ago the guilt is still with me. My main feeling of guilt was having to place mum in emergency respite care and not having the chance to talk to her before this happened as I was nearing carers breakdown and needed urgent help. Mum was very well cared for in her care home but never forgave me for moving her there even though I tried to explain that it was the doctors advice for my health that the awful decision had to be made and I just wanted her to be safe. Also the overwhelming guilt that I was not with her when she passed away having just popped home for a couple of hours rest. I know the guilt comes from the unconditional love we give and is also part of the grieving process BUT if someone could just ‘pot’ the remedy for guilt so many of us experience they would make a fortune!!! My heart goes out to all of you who are experiencing these feelings. No one can prepare us for living and caring with this awful illness we just have to do all that we can and face the journey no matter how long it may take.

 

[Jezzer]

Oh the overwhelming guilt that absorbs us. Even though I lost my lovely mum nearly 8 months ago the guilt is still with me. My main feeling of guilt was having to place mum in emergency respite care and not having the chance to talk to her before this happened as I was nearing carers breakdown and needed urgent help. Mum was very well cared for in her care home but never forgave me for moving her there even though I tried to explain that it was the doctors advice for my health that the awful decision had to be made and I just wanted her to be safe. Also the overwhelming guilt that I was not with her when she passed away having just popped home for a couple of hours rest. I know the guilt comes from the unconditional love we give and is also part of the grieving process BUT if someone could just ‘pot’ the remedy for guilt so many of us experience they would make a fortune!!! My heart goes out to all of you who are experiencing these feelings. No one can prepare us for living and caring with this awful illness we just have to do all that we can and face the journey no matter how long it may take.

Oh @Scouts girl Thank you. You totally "get it". I'm so sorry about your mum and that you weren't with her when she passed. That seems to happen so often and they do say it's because our loved ones don't want us to witness their death. I believe your mum is OK now and that now the dementia has gone, she will understand and most likely tell you, if she could, that there is nothing to forgive. Like you, I got to the stage where I could no longer cope but placing mum in care broke my heart. It must be wonderful to be free of guilt as one member posted. Sorry but that freedom escapes me. Take care of yourself. With love and hugs and immense gratitude for your post xxxx

 

[kindred]

May I PM you? Thanks Jan xx

What's PM darling? Gxxxx