As a carer / daughter I am an absolute non-entity

[mitz]

I don't know where to turn right now. I hope you don't mind me coming here, though what has just transpired, makes me wonder if I'll get the same response here as I have just now. And that is that it's not about me. It's about Mum.

My Mum is end of life. I finally snapped last night as a result of all communication with the care home going through my sister. They have a policy of only speaking to one relative. My sister then 'keeps me in the loop' and if I have anything to say it has to go through her. As a result of the stress of the lockdown, Mum's deterioration, only being allowed to see her for an hour every second day (if she lasts that long), and the cumulative effect of them bypassing me, I snapped and left a note on the care system (inappropriate and unprofessional I know but I've had no other voice) to express how upset I was and how upset Mum would be if she understood. I feel I have already lost my Mum. I had a brief conversation with a nurse a few days ago and got **** on and this morning I got hauled over the coals by the care home manager for leaving the note. And was left in no doubt that it's not about me.

It's not just the care home. Mum's been hospitalised twice in the last month and the hospital take the same stand. Relatives are surplus to requirements. Just shut up, go away, and we'll decided to change all of Mum's meds, let her get pressure sores, put her on the wrong mattress, decide she doesn't need pain medication, leave her to not eat. But as a relative you just don't count - you're locked out. Hospitals, care homes, etc. are having a field day with relatives out the way.

Three years caring for my Mum. Three years of being told in words and actions that I simply don't count. Now in my Mum's final days I want to be able to ask a nurse how she's doing today but instead being told that they've already updated my sister (So go away. It's not about me but my Mum. That's my point. Me asking about Mum IS about Mum. But not in their eyes).

You might agree but this really, really hurts. And now I have nowhere to turn because I'm now a 'trouble maker'.

Thanks for listening and sorry if it's upsetting for you to read.

 

[MrsChristmas]

That must really hurt - after all those years for being there for your Mum and now when you want to be involved you are not allowed to. How frustrating and painful. I guess you must feel pretty worthless and that's horrible feeling.

I was wondering why your sister is being informed and not you?

If you read my posts I've had the same problem - been the main carer but totally shut out.

Is there anyone else that you can talk to at the care home?

I'm so sorry.

 

[mitz]

That must really hurt - after all those years for being there for your Mum and now when you want to be involved you are not allowed to. How frustrating and painful. I guess you must feel pretty worthless and that's horrible feeling.

I was wondering why your sister is being informed and not you?

If you read my posts I've had the same problem - been the main carer but totally shut out.

Is there anyone else that you can talk to at the care home?

I'm so sorry.

Thank you for responding. I am heart broken being cut off from Mum. You are so right. I feel absolutely worthless. Not sure I will ever get over the impact of the coronavirus lockdown.

The reason my sister was nominated was that my sister loves paperwork, she's an absolute whizz at it and I'm grateful to her for that. When Mum went into the care home (this is a new one) my sister filled in the paperwork and in so doing was nominated 'next of kin', 'responsible person' and 'first point of contact'. I have absolutely no objection to my sister talking to anyone or anyone talking to my sister. It is the fact that I am effectively not being allowed my own individual relationship with Mum and the care home. I'm a cc, an FYI.

I was interested to hear you have experienced the same sort of issues in being the main carer but being shut out. I will definitely read through them. Thank you for pointing me in that direction because I think it'll help.

No I don't think so. I think I have now 'cooked my goose' so to speak with the care home because they've all read my note and I'm not popular right now.

Thanks for listening.

 

[Starting on a journey]

Oh bless, these things happen when we are under difficult circumstances.
I am sure you have apologised, if not then do it.
I understand the homes point of view, but I can see yours and am very sorry for you in this situation. It is a wake up call to me to remember that if mum is taken into hospital or goes into a home I must remember to update my sister fully.
Again, fully understand your frustrations we are in exceptional times and we have to be kind but especially be kind to ourselves.
All I can do is send you my best wishes and understanding.

 

[mitz]

Oh bless, these things happen when we are under difficult circumstances.
I am sure you have apologised, if not then do it.
I understand the homes point of view, but I can see yours and am very sorry for you in this situation. It is a wake up call to me to remember that if mum is taken into hospital or goes into a home I must remember to update my sister fully.
Again, fully understand your frustrations we are in exceptional times and we have to be kind but especially be kind to ourselves.
All I can do is send you my best wishes and understanding.

I have of course apologised. However what is said is said and I can't undo it.

Regarding your sister. It's not about you updating her, it's about being mindful not to take ownership of your sister's relationship with her Mum when your Mum is unable to. And not allowing others to do the same because it's convenient for them. I've had a wonderful relationship with my Mum all my life and to be pushed aside when she is end of life, I feel is beyond cruel. But as you say, there is another point of view - for the care home it's easier. And I accept that the care they give is exceptional and Mum is absolutely central to all they do. So please forgive me, I'm highly emotional. Mum's been in hospital twice and came out in a terrible state and now end of life. We weren't allowed in the hospital (which I would normally do) and now I can't help her in the care home.

 

[MrsChristmas]

Thank you for responding. I am heart broken being cut off from Mum. You are so right. I feel absolutely worthless. Not sure I will ever get over the impact of the coronavirus lockdown.

The reason my sister was nominated was that my sister loves paperwork, she's an absolute whizz at it and I'm grateful to her for that. When Mum went into the care home (this is a new one) my sister filled in the paperwork and in so doing was nominated 'next of kin', 'responsible person' and 'first point of contact'. I have absolutely no objection to my sister talking to anyone or anyone talking to my sister. It is the fact that I am effectively not being allowed my own individual relationship with Mum and the care home. I'm a cc, an FYI.

I was interested to hear you have experienced the same sort of issues in being the main carer but being shut out. I will definitely read through them. Thank you for pointing me in that direction because I think it'll help.

No I don't think so. I think I have now 'cooked my goose' so to speak with the care home because they've all read my note and I'm not popular right now.

Thanks for listening.

I don’t know about care homes and I think that is something I will be facing very soon though.

My story is more about manipulation, deception and money. Ibe cared for my elderly other about 5 years as she lives next door. We’ve a.ways been close.

My late father left mum well provided for but when he died mum went from a lovely four bedroomed home to a bungalow next door to me.

my brother lives miles away and handles her finances but we are both lpas.

mum started to get dementia around 2015 but nothing seemed to get done to help her. She just stayed in her home on,y went out if I took her but no help.

I’d arrange drs appointments but she’d refuse to go,

this went for years with me watching my mum steady decline. No new furniture, bedding, nothing. I bought her food and dealt with emergencies.,

Recently things have got very bad but she just keeps refusing care.

social care are now involved and it’s transpired that my brother has manipulated mum so he can keep his inheritance.

I’m just so sad for mum and I wish I’d known sooner and I’d got carers in.

so Im feeling pretty bad because my brother locked me out so I couldn’t help mum.

get support here - they are lovely people who know what you are going through.

you are among friends. Xx

 

[Palerider]

Hi @mitz

I don't think you should allow yourself to feel the way you do. If care homes are using the lockdown as a vice then that needs to be challenged, though perhaps not aggressively. My brother is given his own time at the CH even though he has not helped in anyway or been there for mum at all, I don't mind this as he has to resolve his own conscience and not mine. I say this because as you can see my experiencve is that the CH do accomodate family members and are willing to repeat information if necessary to others. I think your mums care home are being obstructive at a time emotionally that is significant for you, and I would raise this in a formal letter to the CH -if you have the energy and will to write at the moment. I would emphasise the deep emotional pain and stress you are feeling and get your sister on board as well. I would also mention that if the CH were accomodating your needs, then perhaps the scenario you described with your frustration would not have happened in the way it did. Take care

 

[mitz]

Oh that's an awful situation for you and your Mum. Aside from the symptoms of this nasty illness, it also brings out the unsavory characteristics in others. Families are torn apart by it.

I wish you and your Mum well.

 

[None the Wiser]

And that is that it's not about me. It's about Mum.

@mitz Im so sorry that you’ve had this response from the care home. Actually it is about you too, and about the rest of the family. Yes, your mothers immediate care and needs are of greatest importance for the home and they have to ensure that constant interruption from relatives doesn’t hamper their primary role. But they have a secondary role to support the family through an excruciatingly difficult time. I suspect that this role of family support is written somewhere in their policies.
It isn’t surprising that you are anxious and worried and they should understand this. When you are calm try to phone the person in charge and apologise for your action remains the note. Then just explain that you really wanted an update from them rather than your sister. It is hard to receive information second hand.
It really is worth you going back to them, but do it when you are as calm as you can be, and rehearse what you’re going to say beforehand so that as much as possible comes across as you would wish. Good luck.

 

[mitz]

Hi @mitz

I don't think you should allow yourself to feel the way you do. If care homes are using the lockdown as a vice then that needs to be challenged, though perhaps not aggressively. My brother is given his own time at the CH even though he has not helped in anyway or been there for mum at all, I don't mind this as he has to resolve his own conscience and not mine. I say this because as you can see my experiencve is that the CH do accomodate family members and are willing to repeat information if necessary to others. I think your mums care home are being obstructive at a time emotionally that is significant for you, and I would raise this in a formal letter to the CH -if you have the energy and will to write at the moment. I would emphasise the deep emotional pain and stress you are feeling and get your sister on board as well. I would also mention that if the CH were accomodating your needs, then perhaps the scenario you described with your frustration would not have happened in the way it did. Take care

Oh thank you for being so supportive. I was thinking of writing a letter to the care home manager but she made herself very clear on the phone to me this morning that it's not about me. But I have a visit to Mum booked for this afternoon and I'll reserve my energy for her entirely.

 

[Starting on a journey]

I have of course apologised. However what is said is said and I can't undo it.

Regarding your sister. It's not about you updating her, it's about being mindful not to take ownership of your sister's relationship with her Mum when your Mum is unable to. And not allowing others to do the same because it's convenient for them. I've had a wonderful relationship with my Mum all my life and to be pushed aside when she is end of life, I feel is beyond cruel. But as you say, there is another point of view - for the care home it's easier. And I accept that the care they give is exceptional and Mum is absolutely central to all they do. So please forgive me, I'm highly emotional. Mum's been in hospital twice and came out in a terrible state and now end of life. We weren't allowed in the hospital (which I would normally do) and now I can't help her in the care home.

Thanks again for your words of wisdom. You are making me think so much more.

 

[mitz]

@mitz Im so sorry that you’ve had this response from the care home. Actually it is about you too, and about the rest of the family. Yes, your mothers immediate care and needs are of greatest importance for the home and they have to ensure that constant interruption from relatives doesn’t hamper their primary role. But they have a secondary role to support the family through an excruciatingly difficult time. I suspect that this role of family support is written somewhere in their policies.
It isn’t surprising that you are anxious and worried and they should understand this. When you are calm try to phone the person in charge and apologise for your action remains the note. Then just explain that you really wanted an update from them rather than your sister. It is hard to receive information second hand.
It really is worth you going back to them, but do it when you are as calm as you can be, and rehearse what you’re going to say beforehand so that as much as possible comes across as you would wish. Good luck.

Thank you for that support.

After the call from the care home manager I immediately went back into the system and apologised unreservedly.

I understand that for them they've provided an update and it's between me and my sister to manage our communication. But as you say, I want an update from them myself. I think what finished me off last night was their note on the system that should Mum deteriorate they will immediately phone my sister. That was a real blow to the stomach given I've been there for Mum every step of her journey. Not to be told first hand if Mum deteriorates is, to me, barbaric. But through this forum post I'm beginning to think it through. I'm experiencing very strong emotions but they, necessarily, don't deal in relatives emotions. To them it's just a fact: Inform first point of contact. It's perhaps me who needs to process and accept this reality. And just be there for Mum when I visit. Reserve my energy for her.

 

[mitz]

Thanks again for your words of wisdom. You are making me think so much more.

Thank you. I appreciate your saying so. Thanks for listening to what I had to say - it may save you both future hurt when the going gets tough. x

 

[Louise7]

It's a difficult situation as care home staff are as stressed, or even more so, than families at the current time. Staff at mum's home were telling me at the weekend about the amount of abuse they have been receiving from families about not being able to visit when they like. I was shocked to hear of how abusive some families have been to the staff, including trying to force their way into the home. You don't mention what your message said but it could be that it was on top of similar things from other families.

My mum's home will always contact me rather than my sister as I'm down as next of kin. I update my sister so I can perhaps understand why the home may feel that conveying the same messages to more than one family member isn't necessary. Plus staff may also be under specific instructions to only provide information to the recorded next of kin due to data protection issues. Could you speak with your sister and ask if you can replace her as next of kin/first point of contact with the care home?

 

[mitz]

It's a difficult situation as care home staff are as stressed, or even more so, than families at the current time. Staff at mum's home were telling me at the weekend about the amount of abuse they have been receiving from families about not being able to visit when they like. I was shocked to hear of how abusive some families have been to the staff, including trying to force their way into the home. You don't mention what your message said but it could be that it was on top of similar things from other families.

My mum's home will always contact me rather than my sister as I'm down as next of kin. I update my sister so I can perhaps understand why the home may feel that conveying the same messages to more than one family member isn't necessary. Plus staff may also be under specific instructions to only provide information to the recorded next of kin due to data protection issues. Could you speak with your sister and ask if you can replace her as next of kin/first point of contact with the care home?

I wasn't abusive at all - not my style. I expressed my upset at not being included as someone they'd inform should Mum's condition deteriorate. My sister will tell me of course but to feel not worthy of being told first hand something as important as that is horrible. But those are my feelings and my feelings aren't helping anyone. That I hate.... I'm not helping anyone. I can't help Mum anymore.

I agree. I understand they're busy. But I've been Mum's main carer all along with my sister supporting whenever she was able to and for medical appointments. I've always dealt with hospitals, discharges, INR clinics, GPs, care, shopping, outings.... Now all of a sudden I'm not needed. I don't want to replace my sister - she's as much right as me. I just don't want my caring role snatched away from me so suddenly. Mum's dying - I'm no longer needed. That's hard. Very hard. Perhaps that's my actual struggle.

 

[Jaded'n'faded]

Perhaps your sister is the one who needs to smooth things over with the care home and explain to them that she's actually the paperwork person and you are the main carer?
I can see that the CH just want to contact one family member so I think you and your sister should decide between you which that should be and how the two of you will communcate any updates immediately to each other when there is any news.

 

[DianeW]

I agree it is a very difficult and upsetting time, but I think it’s fair that the care home should only have to keep the nominated family member updated.

It is between you and your sister to decide between you who that person should be, just imagine if you were one of 6 children etc....how difficult that would be for the care home to keep all siblings informed if they all wanted that.

Thinking of you and I do understand your upset as being main carer....but it’s a decision you and your sister need to decide on instead of trying to fight Care home procedures.

 

[mitz]

Perhaps your sister is the one who needs to smooth things over with the care home and explain to them that she's actually the paperwork person and you are the main carer?
I can see that the CH just want to contact one family member so I think you and your sister should decide between you which that should be and how the two of you will communcate any updates immediately to each other when there is any news.

I appreciate your response.

That is not going to happen. My sister doesn't want to excluded any more than I do. So I just have to lump it unfortunately. I can accept the care home's right not to have to deal with a ship-load of relatives but when you're the relative that's left out it's hard.

However I have concluded throughout today that that's the way things are. It's horrible but nothing I can do about it. And my making a fuss doesn't help Mum.

 

[mitz]

I agree it is a very difficult and upsetting time, but I think it’s fair that the care home should only have to keep the nominated family member updated.

It is between you and your sister to decide between you who that person should be, just imagine if you were one of 6 children etc....how difficult that would be for the care home to keep all siblings informed if they all wanted that.

Thinking of you and I do understand your upset as being main carer....but it’s a decision you and your sister need to decide on instead of trying to fight Care home procedures.

Thanks for taking the trouble of replying. I see you support the care home. It is of course your right to hold that opinion. But I think it's uncompassionate.