Breaking Point reached today

[velademar]

My OH has frontotemporal dementia and is at obsessive stage with lots of singing and tapping/banging no process skills now and communication memory and mobility issues. I've been struggling really for a few weeks now as he's also incontinent at night and even with pants Kylie sheets etc it's a big clean up each morning. I'm ending up getting up in night several times too as he struggles to get out of bed so I'm really tired. Today he started shouting at me and physcally pushed me away as I was trying to get him to put his shoes on for us to go out to the shops ( he shouts a lot when I'm trying to help him). I'd had to strip and wash his bed, shower him and do everything else and I just snapped and slapped him. We've been together 50 years and it's the first time I've ever done anything like that, to him, or anyone. I was shocked but realise I'm not coping. Not sure where this leaves us, I'm scared it will happen again. Anyone else had same experience it's a hard one to admit even on this forum.

 

[My Mum's Daughter]

Oh I get this, I so get it. Whilst I avoided getting physical with Mum, I admit to having the odd screaming session then getting in the car and driving home. I can't even mention some of the things that went through my head but one day driving across a bridge looked a possible solution for both of us. Yes it really was that bad.
Neither of us chose or wanted to be a carer; well I certainly didn't until this was forced on me. I wasn't born to deal with wet beds, to put up with abuse or provide personal care for in this case, Mum. I also accept that Mum wouldn't want me to be her 24 hour carer. I did far more than she'd have ever dreamt that I was capable of or even wanted me to do but eventually I accepted the inevitable and Mum was placed in a care home.
We still went out, she shopped, walked and drank endless coffees. I didn't and never will, abandon Mum but at some point, we have to admit defeat and accept that we can no longer cope alone.
I think with you, that stage has been reached and you need to look for professional help. So sorry but you've reached the end of your tether and for your own sake, you need a considerable amount of additional help.

 

[scotlass]

Velademar, I can understand why you did what you did, you must have reached breaking point, you're human, and we can all of us only take so much maybe it's time to get some help, don't ever think that you've failed, because you haven't . we take on this role of carer for our loved ones, and do the best we can, but there comes a time for our own sanity, that we need to ask for some help,,,xx

 

[amIinthewrong?]

Oh I get this, I so get it. Whilst I avoided getting physical with Mum, I admit to having the odd screaming session then getting in the car and driving home. I can't even mention some of the things that went through my head but one day driving across a bridge looked a possible solution for both of us. Yes it really was that bad.
Neither of us chose or wanted to be a carer; well I certainly didn't until this was forced on me. I wasn't born to deal with wet beds, to put up with abuse or provide personal care for in this case, Mum. I also accept that Mum wouldn't want me to be her 24 hour carer. I did far more than she'd have ever dreamt that I was capable of or even wanted me to do but eventually I accepted the inevitable and Mum was placed in a care home.
We still went out, she shopped, walked and drank endless coffees. I didn't and never will, abandon Mum but at some point, we have to admit defeat and accept that we can no longer cope alone.
I think with you, that stage has been reached and you need to look for professional help. So sorry but you've reached the end of your tether and for your own sake, you need a considerable amount of additional help.

I get what you mean when you said about admitting defeat, I also had to admit defeat, knowing full well I could not look after my mother any more,and that the decision was out of my hands and I had to acknowledge,that she needed to go into the nursing home, she and I did not want it to happen but it was out of our control, now she won’t speak to me because she thinks I had a choice in where she now lives, this hurts me every single day, but I know deep down at least she is being looked after, which I couldn’t provide because it was wearing me out psychically and mentally, sorry I kind of inserted my own experience in to the conversation, but I think this was the only option that was good for us both even if it hurts me emotionally💐💐💐

 

[canary]

I'm so sorry @velademar it sounds like you have reached breaking point.

Please contact SS tomorrow and tell them that you have carer burnout and cannot continue caring for him - and don't try and hold back the tears. I think you need a period of respite so that you can recover and decide what to do next.

I tried to everything myself too, but people with dementia's needs increase so much that it becomes impossible for one person to meet them and I reached burnout too. Sometimes love (or duty) is not enough

 

[maisiecat]

Yes I was here a year ago. My husband has Parkinsons and mixed dementia.He had always wandered about all night but he stopped recognising me and would attack me.
By 8am each morning I would usually have done 3 loads of washing and he would take me round to show where he had messed (both types) in the night.
The advice i would always give on here is go for help quicker than you think you need it and ask for more than you think you need.
You need respite so you can decide what you want to do in the future and remember it is also about what you want not just what he needs. When you become a carer you lose that sense of self.
Good luck

 

[maggie6445]

Hi @velademar , have you tried Booster Pads inside the pull up? The blurb for the product says it gives additional absorbency to pull ups. Apparently, urine seeps through to the pull up but also gives additional protection.

I haven't used them but have posted under 'bowel incontinence ' to see if others have as I need something that will remove from a pull up as my OH is becoming bowel incontinent.

Also have you used faecal slips inside a pull up?

 

[JaxG]

@velademar I am so sorry you are going through this, it sounds horrendous and I'm not surprised you snapped. You really do need help, you are at breaking point. As others have said do contact SS, tell them you are at breaking point and see if you can get some emergency Respite. Once you have had a break you can decide whether you want to continue living like this.......you really should not have to live like this.

 

[velademar]

@velademar I am so sorry you are going through this, it sounds horrendous and I'm not surprised you snapped. You really do need help, you are at breaking point. As others have said do contact SS, tell them you are at breaking point and see if you can get some emergency Respite. Once you have had a break you can decide whether you want to continue living like this.......you really should not have to live like this.

Thank you all for your ideas and support. I spoke to our social services adult care yesterday. We're known to them from previous needs and carer assessments, however they don't really understand frontotemporal dementia and as my OH looked young and healthy (before his mobility deteriorated), they have put us on a yearly review. Anyway I told them I was really struggling, couldn't cope and am frightened of what might happen. First question back from them was ' would you be self paying?' The answer at the moment is yes so they said OK, we can direct you to local care homes that offer respite and you can enquire with them, also here's a list of home care companies that you can get in touch with to come and help in the mornings/evenings etc. Due to volume and resources they can only help with respite placements etc if the individual has less than the £23+ k. She did say come back to us if you can't find anything. Maybe I should have been more hysterical but it made me feel even more on my own. Anyway, I've made some calls and there are 2 places I'm going to check out tomorrow. Whether he will go or not is the next hurdle, and the money we do have won't last long at the rates they are charging so social services will have to be involved then. X

 

[SherwoodSue]

I am so sorry. It seems so unfair doesn’t it
In warfare one way to break a prisoner down, to get them to talk is to deprive them of sleep. It is a form of torture

So don’t be surprised that you have come to the end of flying solo.

Do ring the phone lines here and carer help lines to get support and financial advice as you look.

 

[velademar]

Thank you x

 

[sue31]

Thank you all for your ideas and support. I spoke to our social services adult care yesterday. We're known to them from previous needs and carer assessments, however they don't really understand frontotemporal dementia and as my OH looked young and healthy (before his mobility deteriorated), they have put us on a yearly review. Anyway I told them I was really struggling, couldn't cope and am frightened of what might happen. First question back from them was ' would you be self paying?' The answer at the moment is yes so they said OK, we can direct you to local care homes that offer respite and you can enquire with them, also here's a list of home care companies that you can get in touch with to come and help in the mornings/evenings etc. Due to volume and resources they can only help with respite placements etc if the individual has less than the £23+ k. She did say come back to us if you can't find anything. Maybe I should have been more hysterical but it made me feel even more on my own. Anyway, I've made some calls and there are 2 places I'm going to check out tomorrow. Whether he will go or not is the next hurdle, and the money we do have won't last long at the rates they are charging so social services will have to be involved then. X

I would go back to them & say you want a full assessment of what his care needs are done ASAP, and that whether he is self funding or not should not even be discussed until the assessment is done. State that this has become a major safeguarding issue for a vulnerable adult.

I had the exact same argument. I refused to talk about finances until it was clear what was needed.
They can’t expect you to find a place for him if you haven’t got a clue what would even be suitable.
Tell them you can’t do it. Your broken. Your partner is now a highly vulnerable person, you are no longer able to do this and it’s reached safeguarding level for you both. Keep saying it.

Unfortunately you need to be made of steel to stand up to them - they will try & side step any responsibility when your doing all the care. Brush you off at the earliest opportunity.

Jeez the system stinks!! You need help - not shoved off to sort it yourself.

 

[velademar]

I would go back to them & say you want a full assessment of what his care needs are done ASAP, and that whether he is self funding or not should not even be discussed until the assessment is done. State that this has become a major safeguarding issue for a vulnerable adult.

I had the exact same argument. I refused to talk about finances until it was clear what was needed.
They can’t expect you to find a place for him if you haven’t got a clue what would even be suitable.
Tell them you can’t do it. Your broken. Your partner is now a highly vulnerable person, you are no longer able to do this and it’s reached safeguarding level for you both. Keep saying it.

Unfortunately you need to be made of steel to stand up to them - they will try & side step any responsibility when your doing all the care. Brush you off at the earliest opportunity.

Jeez the system stinks!! You need help - not shoved off to sort it yourself.

Thank you @sue31 I agree, I expect that is the first question any care home will ask, what his needs are. I'm no expert other than what I know I have to do for him now. I think the safeguarding point is a good one, as I feel we are both vulnerable. I'll get back to them tomorrow it's hard to be strong but I need to stand up to them as you say. Thank you again xx

 

[sue31]

Thank you @sue31 I agree, I expect that is the first question any care home will ask, what his needs are. I'm no expert other than what I know I have to do for him now. I think the safeguarding point is a good one, as I feel we are both vulnerable. I'll get back to them tomorrow it's hard to be strong but I need to stand up to them as you say. Thank you again xx

Just stick to your guns. If you already have an allocated SW ask for them. If you don’t they should assign one to you.

Keep on the safeguarding & vulnerable track when you speak to them.
Refuse to discuss any financial details until they assess.
If they try pressuring you…….
Just say “ That’s something that will be dealt with once he is assessed & the correct care package is agreed - I am not disclosing any of our financial matters prior to the assessment of his needs.”

Be firm.

If they can they will try & push you into doing the job they are getting paid for.!

 

[sdmhred]

Hello @velademar
I think you will need to be very firm with SS. I’m even thinking you should say you need a break and youre going on xxxx date. Your husband will then be left alone. You say you’re so fragile emotionally you cannot deal with sorting respite and you need urgent help. otherwise I think you may be fobbed off again. Sorry.

 

[JaxG]

You are right @sdmhred it is the only way. I am so disgusted that carers have to fight so hard for any support, this journey through dementia has been eye opening. My husband became violent through dementia - SS closed the case because I would not leave and make myself homeless. If I had left and sold our home then I would have been left with very little, but yes of course he could have funded his care for a year or two. He was a difficult man, but not a violent one, it was a disease that caused these changes but there is not support. disgusting.
So @velademar insist on an assessment, cry, tell them you are broken and you can't cope, tell them you will be going away for a few days, this is the only thing that works. I am so sorry you have to go through this.

 

[TeacherSue]

Thank you all for your ideas and support. I spoke to our social services adult care yesterday. We're known to them from previous needs and carer assessments, however they don't really understand frontotemporal dementia and as my OH looked young and healthy (before his mobility deteriorated), they have put us on a yearly review. Anyway I told them I was really struggling, couldn't cope and am frightened of what might happen. First question back from them was ' would you be self paying?' The answer at the moment is yes so they said OK, we can direct you to local care homes that offer respite and you can enquire with them, also here's a list of home care companies that you can get in touch with to come and help in the mornings/evenings etc. Due to volume and resources they can only help with respite placements etc if the individual has less than the £23+ k. She did say come back to us if you can't find anything. Maybe I should have been more hysterical but it made me feel even more on my own. Anyway, I've made some calls and there are 2 places I'm going to check out tomorrow. Whether he will go or not is the next hurdle, and the money we do have won't last long at the rates they are charging so social services will have to be involved then. X

I know how you feel. In the early days of my husband's dementia I lashed out at him. Thankfully I accessed counselling through work which gave me strategies to cope. Such as just walking away. You can't bring him in to your world anymore. But get a proper financial assessment and a carers assessment through adult social care. The carers' assessment is about you and how you are able to care. What support you need to be able to carry on caring at home. The financial assessment goes into finances. Have you applied to the council for reduction in council tax? If you have a partner with dementia you are deemed as living on your own.

 

[Pickalily]

I so can relate to this. Two weeks ago I rang SS in desperation as I wasn't coping and trying to get respite to give myself a 'breather' Sadly I do not have POA for Health & Welfare (Finance yes) which is the major problem. In the course of my conversation I mentioned sitting in the greenhouse, looking at my wrist & then the glass. I said I know it sounds melodramatic but she went into overdrive and said she had to report what I'd said to my GP.
I was given an appointment with a doctor the next day and explained how low I was feeling. He did at least listen. I asked what would happen if I just walked out and he was a bit gobsmacked by that . Didn't have an answer.
He referred me to the social proscribing team who rang talked things through and asked if I'd had an assessment, which is still in a backlog. Gina said if they hadnt contacted me within a week she would chase them up. Stupidly when she rang I said give them another week.
Thursday night I was trying to put his inco pants on and he kept moving about so I told him to keep still as it wasn't doing my back any good (I have arthritis is the spine and other areas) He said I've got a bad back and stupidly I said it isnt all about you and he called me selfish. Coming from someone has who has always be selfish and self centred, I lost it. I shouted b*****d at the top of my voice, he shouted back and I raised my fist to him. I really, really wanted to hit him. I was so upset and wound up I spent the night in the spare bedroom, I couldn't bear to be in the same room as him. Last night wasnt much better. I'm not sleeping, all I want to do is cry. Mostly I hate the person I'm living with, haven't loved him for many years. He's 91. I'm not so heartless as to want him dead, but I dont want to be around him anymore. 95% of the time he doesnt know who I am

 

[velademar]

I so can relate to this. Two weeks ago I rang SS in desperation as I wasn't coping and trying to get respite to give myself a 'breather' Sadly I do not have POA for Health & Welfare (Finance yes) which is the major problem. In the course of my conversation I mentioned sitting in the greenhouse, looking at my wrist & then the glass. I said I know it sounds melodramatic but she went into overdrive and said she had to report what I'd said to my GP.
I was given an appointment with a doctor the next day and explained how low I was feeling. He did at least listen. I asked what would happen if I just walked out and he was a bit gobsmacked by that . Didn't have an answer.
He referred me to the social proscribing team who rang talked things through and asked if I'd had an assessment, which is still in a backlog. Gina said if they hadnt contacted me within a week she would chase them up. Stupidly when she rang I said give them another week.
Thursday night I was trying to put his inco pants on and he kept moving about so I told him to keep still as it wasn't doing my back any good (I have arthritis is the spine and other areas) He said I've got a bad back and stupidly I said it isnt all about you and he called me selfish. Coming from someone has who has always be selfish and self centred, I lost it. I shouted b*****d at the top of my voice, he shouted back and I raised my fist to him. I really, really wanted to hit him. I was so upset and wound up I spent the night in the spare bedroom, I couldn't bear to be in the same room as him. Last night wasnt much better. I'm not sleeping, all I want to do is cry. Mostly I hate the person I'm living with, haven't loved him for many years. He's 91. I'm not so heartless as to want him dead, but I dont want to be around him anymore. 95% of the time he doesnt know who I am

Awful for you, and its so hard to get people to understand what its like if they haven't experienced it. Sadly since my first post on this thread my OH (only 73) has fallen down stairs, ambulance, a long night in A&E, and is now in hospital, no bones broken but bruised, scraped and confused. I've visited him today but he's not really with it. He'd become very unsteady on his feet but couldnt recognise it because of the type of dementia he has. He thinks he's OK, nothing wrong with him. He followed me upstairs when I told him to stay sitting in his chair and I didn't know until he fell. Even stair rails didn't help as he doesn't always hold on to them and misjudges the steps. No eyes in the back of carer's heads sadly. He will be assessed next week (as its BH of course!) but they've told me to expect that from a safeguarding point of view for both of us it's likely they will recommend residential care. I'm stunned and dont know what to make of it. Does it really take a near death experience for the authorities to realise that someone isnt safe at home, despite being told so by his wife of 50 years many times? I've had a couple of really good night's sleep for the first time in months. Now just waiting to see.......

 

[canary]

Im glad that he is OK with nothing broken.
Yes, sadly it often does take a crisis before SS take notice. I had been pulling my hair out for months, but it was only once mum was found on the floor having had a TIA that people started listening.