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Heartbroken - feel like walking away

CAL Y

Registered User
Jul 17, 2021
284
0
Well the tears are well and truly flowing you have hit the nail right on the head. There is no way I can cope if she goes home. I gave it a go in September and was ready to admit defeat after the New Year but circumstances beat me to it. I was trying to look after my mom, her house and my own family/home. I felt like I was on a constant merry go round there was never enough time and I felt I was not doing anything well. Rubbish daughter, mother, wife etc.

Hopefully the care home and the mental health consultant are of the opinion that she cannot go home and I will oppose it to the extent that I will refuse to provide any care. Trouble is when she is in host mode she comes across as being quite with it so I might have a battle on my hands.

Thanks for listening I thought I had built a strong brick wall around everything that has gone on over the last few weeks/months but listening to her rant to the carers broke me.
@JHA . Throughout my husbands illness I was always amazed by the ignorance of Host Mode shown by social workers and even many medical professionals.
I had to explain it to quite a few of them.
 

Violet Jane

Registered User
Aug 23, 2021
779
0
Concentrate on your son. He needs you more than your mother. Your mother is safe and being cared for. I really wouldn't keep phoning the home as it's just upsetting you and not achieving anything. The home will ring you if there is anything important you need to know.
 

JHA

Registered User
Aug 7, 2021
629
0
I feel a bit calmer today about everything. Meeting about son went as good as it could he actually participated which is a first for quite a while. Another meeting is planned for next Thursday then we have an Emergency Review to agree a plan going forward.

I did phone the care home yesterday morning and a carer was supposed to phone me back to tell me how my mom was at 4pm (no call was forthcoming and I did not ring again). I have not phoned today but I need to pop in tomorrow with things that I think she will need so will ask how things are going then.

I am a bit stuck now as to what to do. The three weeks respite ends next Wednesday and POA is still not back from OPG the last I was told was it would be issued within two weeks of 17th Jan. From the brief conversations I have had on the phone with my mom she does not want to stay there but I know she cannot return home .

I have a letter from the Mental Health Consultant who saw her just before Christmas who said she was incapacitated and the Care Home Manager has verbally said on the phone that she does not think my mom would be safe at home as she has no comprehension of her care needs. What do I need to do to ensure she remains in the care home? A Duty Social Worker called me last week and said she would be allocated a Social Worker shortly (but in the next breath said to chase them up if I heard nothing by the end of January). My mom will have to self fund unless CHC is awarded (unlikely).

At the moment the relationship between my mom and me is not very good as in her eyes I took her to a care home and left her. I had no choice I could no longer keep her safe and it was on the recommendation of the Mental Health Consultant that I organised respite care. The care home is currently on lockdown so visiting is not an option plus I am not sure that would be a good idea.
 

Violet Jane

Registered User
Aug 23, 2021
779
0
That's great that the MH consultant has put his opinion in writing and that the care home will back you up. I think that you have no option but to continue the care home placement and so you need to check that the home is able to keep your mother. SS seem to be in no hurry to do anything, as you have seen before. Please take a step back and give yourself a breather. You do not need to ring the home daily. If there is anything important that you need to know the home will ring you. If you visit your mother when you drop off her things you will just get a torrent of abuse which will just make you feel worse.

You do not have to keep justifying your decision to people on this forum. We all understand that you had to place your mother in a care home because she was no longer safe at home on her own, you could no longer stay with her in her home and she could not be cared for by you in your own home. Your son must be your priority. He is young and needs your support. Other people need to look after your mother now. You have done enough.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,087
0
High Peak
Violet Jane beat me to it but I read your post and my first thought was also that you really don't need to justify moving your mum to a care home! We know, we believe you! What's more, everyone else involved agrees it is what she needs, so don't doubt yourself :)

But your mum will never agree because she doesn't accept her diagnosis and thinks there's nothing wrong with her. So in her mind it makes no sense that you've 'put' her there and she's angry. Your next step really is to work on deflecting the blame. Most people find 'the doctor said' is a good one. When I was in this position with my mum, I simply lied through my teeth. I told her I agreed with her that she should move, but the doctor said she had to stay there for the time being, just until she was stronger. I insisted it was completely out of my hands and that there was nothing I could do till the doctor said she was better... 'So eat your food and we'll see how you are in a few days.' (I do recall one time it really escalated and I ended up telling her a judge had made the decision and she'd have to go to court to reverse it. Far-fetched, yes, and probably mean but it was nothing compared to the outrageous tales she told me, so I decided whatever I told her was OK! Not as if she remembered 10 minutes later...)

I didn't manage to get her eating much and she swore she'd never seen a doctor but I did succeed in deflecting the blame away from me. (Mostly. She continued to blame me for everything else, but hey-ho.)
 

JHA

Registered User
Aug 7, 2021
629
0
You do not have to keep justifying your decision to people on this forum. We all understand that you had to place your mother in a care home because she was no longer safe at home on her own, you could no longer stay with her in her home and she could not be cared for by you in your own home. Your son must be your priority. He is young and needs your support. Other people need to look after your mother now. You have done enough.

Sorry for this I think I am still trying to convince myself it is for the best.
 

Violet Jane

Registered User
Aug 23, 2021
779
0
No need to apologise. Just because a decision is painful doesn’t mean that it’s not the right decision. With dementia, you are often making decisions that you are not very happy with because you have no other option.
 

JHA

Registered User
Aug 7, 2021
629
0
I took the advice and stopped ringing the care home they just ring me when needed. Thursday and Friday it was about repeat medication.

Yesterday afternoon I popped in with a few treats and some hearing aid batteries - they are still on lockdown so a visit is not possible. When I got there a carer came out to me and when I said who the delivery was for she pointed back at the foyer and said your mom is just the other side of the door. Apparently she had been difficult all day and wanted to go home etc etc and was waiting by the key coded front door. The carer took the bag inside and was going to pass it on a little later so as not to cause my mom any distress when she realised I was there.

Today I had another call to say that my mom is still being very difficult. She had hit a carer, tried to force her way through the front door with a fire extinguisher and had taken a butter knife and put it in her bag. She also reckons they are trying to poison her and that she needs to leave as her gran will be waiting for her. They had rung the Crisis team who came out and told my mom she could go home if she took a tablet (Carer is putting in a complaint as the Crisis team should not have lied to her as there is no way she can go home). The Police were also called due to the knife in her handbag and they are currently waiting for a Paramedic but they are not sure what use they will be. Her mental health consultant has also been emailed for urgent action tomorrow.

The care home is a residential care home split into four units two of which are specifically for dementia. The Carer seemed to think that it is right place for my mom as long as they can get the appropriate medication sorted to calm her and help her settle. She is currently on a respite bed which ideally I would like to make permanent as the staff have been fantastic but due to yesterday and today I am not sure this will be able to happen. Mom is currently on rivastigmine and recently was prescribed lorazepam which is not helping.
 

Midge155

Registered User
Jul 14, 2021
19
0
I took the advice and stopped ringing the care home they just ring me when needed. Thursday and Friday it was about repeat medication.

Yesterday afternoon I popped in with a few treats and some hearing aid batteries - they are still on lockdown so a visit is not possible. When I got there a carer came out to me and when I said who the delivery was for she pointed back at the foyer and said your mom is just the other side of the door. Apparently she had been difficult all day and wanted to go home etc etc and was waiting by the key coded front door. The carer took the bag inside and was going to pass it on a little later so as not to cause my mom any distress when she realised I was there.

Today I had another call to say that my mom is still being very difficult. She had hit a carer, tried to force her way through the front door with a fire extinguisher and had taken a butter knife and put it in her bag. She also reckons they are trying to poison her and that she needs to leave as her gran will be waiting for her. They had rung the Crisis team who came out and told my mom she could go home if she took a tablet (Carer is putting in a complaint as the Crisis team should not have lied to her as there is no way she can go home). The Police were also called due to the knife in her handbag and they are currently waiting for a Paramedic but they are not sure what use they will be. Her mental health consultant has also been emailed for urgent action tomorrow.

The care home is a residential care home split into four units two of which are specifically for dementia. The Carer seemed to think that it is right place for my mom as long as they can get the appropriate medication sorted to calm her and help her settle. She is currently on a respite bed which ideally I would like to make permanent as the staff have been fantastic but due to yesterday and today I am not sure this will be able to happen. Mom is currently on rivastigmine and recently was prescribed lorazepam which is not helpin
Hi @JHA i’m sorry you’re going through a difficult time. My mam went into a nursing home at the beginning of August 2021. It was far from plain sailing for months after she went in and she is really only beginning to settle this past month or so and I’m afraid to even type that incase I’m tempting fate! Mam doesn’t think there’s anything wrong with her that she copes great on her own etc but has lost all insight and ability to reason. She went through a particularly hard time about 2 months into her stay and this has resulted in several medication tweaks and a referral to the psychiatry for the elderly team (we are in the Republic of Ireland). I’ve been called every name under the sun and been phoned at all hours constantly and been subjected to the most appalling abuse from her. She’s moved rooms and moved to a shared room which didn’t work out, she’s moved wings in the NH also. She was extremely aggressive during one visit with me and I was advised not to visit for a while to let her settle. I took that advice and also managed to cancel her mobile phone contract so them factors together with her medication review appear to have helped her settle greatly. It’s been and continues to be very difficult for me to handle the guilt of putting my mam in a home but I know she’s safe and well looked after and needs to be where she is.

I definitely think the Mental Health Consultant needs to urgently review your mam’s meds to see if there is something that can make her that bit calmer. I’m not a fan of over medicating but I really do believe in quality over quantity and I’ve seen first hand how agitated, aggressive and delusional my mam can get as a result of her dementia and it is terrifying and I really don’t want that for her and I can only imagine how terrifying it is for her so if there is some way that her trauma can be eased I would support it. I wish you all the best and I hope I’ve not gone on for too long!!!
 

melli

Registered User
Dec 9, 2021
32
0
Hi @JHA, my Mom also went in with delirium which just magnified the dementia. It can take several months to lift and makes it a lot worse. I had a SW who told me that they like them to " have the Journey " as in go home and try care, then fail, then try again, was also told she only needed residential not nursing care. I felt like Id put her in maximum security - whilst she could actually be in a better environment. You must be going through hell, as i can remember being in the middle of it thinking there was no way out. The care home were so helpful as was the GP assigned to the care home - he got a best Interest meeting and they can put in place a DOL order to say that your Mom hasn't got the capability to decide where she lives. you need to have break, try telling yourself you are isolating ! give yourself a few days just to think about what you need, if you want to know how she is - email them and they will get back to you but that means you wont be anxious about the call . Take care
 

Violet Jane

Registered User
Aug 23, 2021
779
0
This is all very upsetting but a silver lining is that everyone is now aware of how extreme your mother's behaviour can be. I hope that SS will now understand why she can't go home and will push for her to receive appropriate medication.
 

JHA

Registered User
Aug 7, 2021
629
0
Hi @JHA i’m sorry you’re going through a difficult time. My mam went into a nursing home at the beginning of August 2021. It was far from plain sailing for months after she went in and she is really only beginning to settle this past month or so and I’m afraid to even type that incase I’m tempting fate! Mam doesn’t think there’s anything wrong with her that she copes great on her own etc but has lost all insight and ability to reason. She went through a particularly hard time about 2 months into her stay and this has resulted in several medication tweaks and a referral to the psychiatry for the elderly team (we are in the Republic of Ireland). I’ve been called every name under the sun and been phoned at all hours constantly and been subjected to the most appalling abuse from her. She’s moved rooms and moved to a shared room which didn’t work out, she’s moved wings in the NH also. She was extremely aggressive during one visit with me and I was advised not to visit for a while to let her settle. I took that advice and also managed to cancel her mobile phone contract so them factors together with her medication review appear to have helped her settle greatly. It’s been and continues to be very difficult for me to handle the guilt of putting my mam in a home but I know she’s safe and well looked after and needs to be where she is.

I definitely think the Mental Health Consultant needs to urgently review your mam’s meds to see if there is something that can make her that bit calmer. I’m not a fan of over medicating but I really do believe in quality over quantity and I’ve seen first hand how agitated, aggressive and delusional my mam can get as a result of her dementia and it is terrifying and I really don’t want that for her and I can only imagine how terrifying it is for her so if there is some way that her trauma can be eased I would support it. I wish you all the best and I hope I’ve not gone on for too long!!!
Your mam sounds very similar to mine. As far as my mom is concerned there is nothing wrong with her she is perfectly ok. Hopefully the Mental Health Consultant can do something to help her tomorrow - he was the one who initially prescribed the Lorazepam to calm her just in case I managed to find a respite bed before Christmas.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,722
0
Nottinghamshire
I'm so sorry things are so tough @JHA, but the care home sound great and it's good they want to keep your mum there if they can. My mum's first few months were difficult, with her trying to escape on numerous occasions. Things improved when she changed floors. It was almost as though she had moved somewhere else entirely and although she continued to be feisty (and still is to a degree) she settled much better. I'm not sure if it was the different mix of residents or the fact the senior carer was a man, and mum always responds much better to men.
Lets hope the consultant can tweak her medication and things settle down.
 

JHA

Registered User
Aug 7, 2021
629
0
Hi @JHA, my Mom also went in with delirium which just magnified the dementia. It can take several months to lift and makes it a lot worse. I had a SW who told me that they like them to " have the Journey " as in go home and try care, then fail, then try again, was also told she only needed residential not nursing care. I felt like Id put her in maximum security - whilst she could actually be in a better environment. You must be going through hell, as i can remember being in the middle of it thinking there was no way out. The care home were so helpful as was the GP assigned to the care home - he got a best Interest meeting and they can put in place a DOL order to say that your Mom hasn't got the capability to decide where she lives. you need to have break, try telling yourself you are isolating ! give yourself a few days just to think about what you need, if you want to know how she is - email them and they will get back to you but that means you wont be anxious about the call . Take care
I am not sure if its delirium this time as I have not seen her for nearly three weeks. She was quite agreeable when I took her to respite and I did tell a few love lies and left whilst she was in the dining room. I found out on Thursday by accident when discussing meds with the care home that a DOLs is pending so I assume the Mental Health team that came out the day after I took her to the care home did it - apart from the Consultant the Mental Health team have cut me out of the loop but I will rectify that tomorrow.

The care home have been amazing they were the only people that have actually helped - I dread to think what would have happened to her (or me) if I had not managed to get her into a respite bed.
 

Violet Jane

Registered User
Aug 23, 2021
779
0
Surely SS can’t say that your mother can return home if a DOL order is being applied for. That implies that she lacks capacity and is not safe without 24 hour supervision.
 

JHA

Registered User
Aug 7, 2021
629
0
Surely SS can’t say that your mother can return home if a DOL order is being applied for. That implies that she lacks capacity and is not safe without 24 hour supervision.

I only found about the DOL order late on Thursday whilst discussing repeat medication with the care home. Apparently it was done the day after I left her in the care home so when I spoke to the Duty Social Worker was unaware of its existence. I am just about to email the Mental Health Consultant and will copy in 'everyone' that I have email addresses for as my mom needs as much help as she can get.

I know my mom is in the safest place that she can be and there is no way I will allow anyone to say she can return home.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,722
0
Nottinghamshire
It's annoying you weren't told about the DoLS application @JHA, but it does sound like a very good idea. When the psychiatrist and the social worker have visited your mother you should get a phone call about being her representative. You don't have to do this, in fact as she probably still wants to go home and you know that wouldn't work, it may be better if someone else does it.
I hope you get some satisfactory replies to the email you've sent.
 

Bettusboo

Registered User
Aug 30, 2020
71
0
Some of you will already have read my previous threads. My mom has LWD and is currently in a respite bed at a local care home - she has been there for nearly two weeks.

I had to do something to keep her safe as I could not be in two places at once. I had spent nearly 8 days/nights with her (she lived alone, refused to fund carers) and had wandered out of the house in the middle of the night. The police picked her up and took her home and called me as they had my details from when she went AWOL from the local hospital in July. She went into the care home willingly, signed the paperwork and I left her - I am not quite sure what 'love lies' I told as I had reached breaking point and knew that I could not carry on any longer and although Crisis, a Mental Health consultant and her GP were involved they just kept telling me a plan will be made tomorrow. This started early hours 23 December and I finally put her into respite on the 29th.

I do not have POA yet it should be granted the end of this month/beginning of February.

Today I phoned the care home to see how she was. Unfortunately rather than a carer telling me how things were they brought my mom to the phone and so the ranting started. She is finished with me for putting her there, she does not know why I would treat her like this, all I am after is her money, using her money etc etc she then walked away from the phone and continued to tell the carers how awful I was - she had not hung up so I literally heard everything including the carers agreeing with her.

Apparently I am keeping her bank card - yes I do have her bank card because she doesn't know how to use a cashpoint she always went into the bank and did things over the counter. Since Covid this has not been possible so she would ask me for cash from the cashpoint. Then she is telling them how good she has been to me etc etc amongst other things.

It was basically a stomach punch. I have always been there for her (I am an only child and my dad died over 30 years ago). Prior to Covid she was at my home more than her own and since the first Covid lockdown I am the only person who has made sure she is ok and since September I have been there every morning with two meals, washing, bits of shopping etc etc putting my own family second. In July she was hospitalised with delirium and went from the hospital into an assessment bed at a care home - at the beginning of September Social Services decided she could go home with a care package - within a month she had stopped the care package and everything was left to me.

My mom is not the easiest person to get on with, trust me we have had our differences but this horrid disease has brought out the worst in her and I am not sure I can deal with the low blows. I know she cannot help it but I do not think I have the strength to do it.
If she doesn’t have capacity and you don’t yet have POA, social services make a best interests decision. Be clear that you cannot go in caring gif her. If she goes home it is social services who have made the call and not you. It doesn’t sound like they would make that decision though and residential care is probably needed. You have done and are doing your best. Look after yourself. Much of this is beyond your control.
 

JHA

Registered User
Aug 7, 2021
629
0
It's annoying you weren't told about the DoLS application @JHA, but it does sound like a very good idea. When the psychiatrist and the social worker have visited your mother you should get a phone call about being her representative. You don't have to do this, in fact as she probably still wants to go home and you know that wouldn't work, it may be better if someone else does it.
I hope you get some satisfactory replies to the email you've sent.
I am not sure who else could be her representative. I am an only child and if the last conversation I had with my mom was anything to go by she wants nothing whatsoever to do with me ever again. I understand that was the dementia talking as she has no idea why I have taken her from her home and placed her in a care home that she does not want to be in. Mom does have siblings but none of them have seen her for months but they are all of the opinion that she cannot go home.

Can I ask what being a representative entails? I will have both POA's eventually - last update from OPG was they should be issued within two weeks of today.