Home versus home

[Chemmy]

I realise my earlier comment upset you and I apologise for that.

If your dad was currently in hospital, I wonder if that would somehow feel less traumatic for both you and him than being in a care home? Would he still be blaming you for putting him in there or would he - and I suspect this would be the case - be more accepting? Somehow the very idea of being in a care home has negative connotations for most of us.

Strangely enough, people generally accept the need to be in a multiple occupancy hospital ward with ever-changing staff much more easily than they do being in a care home, in their own room with far more personalised care. Being at home is clearly no longer an option so you have gone for the next best choice. Perhaps try and think of the care home as the building in which he is receiving appropriate care, just the same as a hospital would be, and he is in there because you are acting in his (and your mum's) best interests.

That's all anyone can possibly be expected to do. There is no reason for you to feel guilty. Go easy on yourself. You're doing great.

 

[Northern75]

Thanks Chemmy - no need to apologise though, it wasn't you who upset me and you were only giving an honest response, which I appreciate. Dad spent eight days in hospital in January and he was exactly there as he is now. The thing is (and I love my dad very much, so please don't think I'm being mean) is that he has always been quite a demanding character in certain respects. Since he got ill, his expectations of us have been beyond what anyone can reasonably manage. He demands attention 24/7, which at home for the past six months or so he's been getting. We made a rod for our own backs in a way (and mostly me and my sister - my mum handled it a lot better) as we were allowing ourselves to be run ragged by him - do this, do that, change this, get that...it has been relentless. I would go into the kitchen to make dinner and within minutes he would be calling me back saying he was lonely, or finding something irrelevant and unimportant for me to do just to get me back in the room. He would say he needed to go up to bed for a rest, but as soon as we'd got him to bed (no easy feat) be complaining about being on his own and expecting us to stay sitting with him the whole time he was there. The carers who were coming to the house told us we needed to stop and that it was crazy (the social worker went as far as calling him 'manipulative'), but the difficult thing was that because we'd started it and allowed dad to become used to it, trying to ease off and do slightly less then led to 'you don't care...you don't give a s%!t about me'. Now he's in the care home, he just thinks we've abandoned him (despite the fact that all of us have been there every day. I realise we can't keep that up either - ironically, this week of 'respite' has been the most difficult and exhausting of all). We're just going to have to carry on trying to deflect the nasty comments (very difficult) and hope that what so many people here have been saying will be right for us too eventually, and that things will settle down over time. I'd like to think the guilt will ease, but it's not going to happen any time soon.

I realise my earlier comment upset you and I apologise for that.

If your dad was currently in hospital, I wonder if that would somehow feel less traumatic for both you and him than being in a care home? Would he still be blaming you for putting him in there or would he - and I suspect this would be the case - be more accepting? Somehow the very idea of being in a care home has negative connotations for most of us.

Strangely enough, people generally accept the need to be in a multiple occupancy hospital ward with ever-changing staff much more easily than they do being in a care home, in their own room with far more personalised care. Being at home is clearly no longer an option so you have gone for the next best choice. Perhaps try and think of the care home as the building in which he is receiving appropriate care, just the same as a hospital would be, and he is in there because you are acting in his (and your mum's) best interests.

That's all anyone can possibly be expected to do. There is no reason for you to feel guilty. Go easy on yourself. You're doing great.

 

[Chemmy]

He sounds just like my elderly neighbour. I pop round and see them and try and collar his wife in the kitchen, just to let her let off steam. She is on her knees, running round after him. I swear it will finish her off first.

There should be a balance between the needs of the cared for and the carer but all too often this ends up out of kilter.

It is no-one's 'fault' that the situation is as it is, therefore there is no reason for him to blame or guilt trip you and your mother. You are all playing the hand you have now been dealt the best way you can.

I'm afraid, like many of us, you just have to take his comments on the chin. He is being unfair, but cannot be expected to recognise this. His dementia is getting in the way.

As someone else said earlier, acceptance is the key. It sounds as though you are working towards that in a kind of grieving process, but aren't quite there yet. That's when you'll find some peace.

 

[Witzend]

Northern, you don't say how your dad's short term memory is, but if it's already very poor then you don't need to tell him that he will never be going home. Many people tell the person that it's just until 'the doctor' thinks they are better, or stronger, or while they sort their meds out, or anything else that sounds plausible and passes the 'blame' on to someone else.

The abuse and nasty comments are so hard to cope with - the only way is to build a sort of shell around your feelings if you possibly can - a lot easier said than done, I know. The sad fact is, people with dementia often become quite unable to comprehend or take into account anyone's needs or wishes but their own. They can't help it, but that doesn't make it any easier to live with. They can begin to seem not only horribly selfish and demanding, but also utterly unconcerned about whether they are bitterly wounding their nearest and dearest.

My brother was always the 'golden boy' and did so much for our mother. But that didn't stop her being so vile to him that he once burst into racking sobs over the phone while telling me about it. I will never forget that - the sound of my normally robust and jolly brother crying like that - the sudden silence so that I thought I'd been cut off, followed by that heart-rending sound. What was almost as bad was the thought that our pre-dementia mother would have been horrified if she'd known what she'd done. But that didn't make it any easier at the time.
Her 'nasty' stage did pass eventually, but only as her dementia got worse. But I have to say that despite that it was a great relief to us.

 

[Northern75]

That's how it feels - the hand we've been dealt, only none of us knows how best to play it. My mum cried today - it was awful. She's usually so strong and very rarely cries (unlike me - I cry at just about everything). I'm alright at work as I'm keeping busy and am distracted, but as soon as I get home in the evenings it all just hits me like a fist and I feel physically knocked over by the realisation of it all. Just keep swimming I suppose.

He sounds just like my elderly neighbour. I pop round and see them and try and collar his wife in the kitchen, just to let her let off steam. She is on her knees, running round after him. I swear it will finish her off first.

There should be a balance between the needs of the cared for and the carer but all too often this ends up out of kilter.

It is no-one's 'fault' that the situation is as it is, therefore there is no reason for him to blame or guilt trip you and your mother. You are all playing the hand you have now been dealt the best way you can.

I'm afraid, like many of us, you just have to take his comments on the chin. He is being unfair, but cannot be expected to recognise this. His dementia is getting in the way.

As someone else said earlier, acceptance is the key. It sounds as though you are working towards that in a kind of grieving process, but aren't quite there yet. That's when you'll find some peace.

 

[Northern75]

Witzend, dad's short term memory is absolutely fine, so he knows what day it is and he knows what day he's supposed to be coming home. Dementia with Lewy Bodies seems so different to Alzheimers in a lot of respects (my grandfather had Alzheimers and he was completely different to dad). Mum has told him today that the respite has been extended and he was really nasty to her, swearing at her and calling her names. What you've said about the behaviour is so true - dad cannot see how physically exhausted my mum is or how depressed my sister is. He had a go at me today about having to leave to go to work. He had a physiotherapist come out to the home (don't know why - as my mum said, it was about a month too late) and he was also very rude to her. We have to take dad to the hospital tomorrow for the results of his scan. I am absolutely dreading it.

It sounds as though your mother must have been pretty cruel to your brother to make him cry like that. It's heart breaking. Completely not her fault, yet so painful for everyone around her. I've been up to see dad every day, and every day when I have to leave he looks as me as though he hates me. Sadly, I think we've got a whole world of nastiness to come before things start to get any easier. I miss dad so much. I don't think that will ever go away.

Northern, you don't say how your dad's short term memory is, but if it's already very poor then you don't need to tell him that he will never be going home. Many people tell the person that it's just until 'the doctor' thinks they are better, or stronger, or while they sort their meds out, or anything else that sounds plausible and passes the 'blame' on to someone else.

The abuse and nasty comments are so hard to cope with - the only way is to build a sort of shell around your feelings if you possibly can - a lot easier said than done, I know. The sad fact is, people with dementia often become quite unable to comprehend or take into account anyone's needs or wishes but their own. They can't help it, but that doesn't make it any easier to live with. They can begin to seem not only horribly selfish and demanding, but also utterly unconcerned about whether they are bitterly wounding their nearest and dearest.

My brother was always the 'golden boy' and did so much for our mother. But that didn't stop her being so vile to him that he once burst into racking sobs over the phone while telling me about it. I will never forget that - the sound of my normally robust and jolly brother crying like that - the sudden silence so that I thought I'd been cut off, followed by that heart-rending sound. What was almost as bad was the thought that our pre-dementia mother would have been horrified if she'd known what she'd done. But that didn't make it any easier at the time.
Her 'nasty' stage did pass eventually, but only as her dementia got worse. But I have to say that despite that it was a great relief to us.

 

[Ellaroo]

Hi Ellaroo, Dad has been having carers in four times a day - about thirty minutes in the morning to wash and dress him and then twice in the day (about fifteen minutes to check whether he needs toilet etc) and then again in the evening to put him to bed. We were told that this was the maximum help we would get - my mum has said that a night sitting service isn't available. I know a nurse who told me that it's available where she is, although she works under a different area. These are all things we'll need to find out this week, although everything seems a bit up in the air as our regular social worker is off on leave and the replacement social worker was apparently rude to my mum the first time they spoke.

The problem we've got is dad's complete lack of mobility. It takes two people to move him anywhere now (I made the mistake of trying to move him from his chair by myself yesterday, and we had a fall. I managed to get beneath him so that I broke the fall, but it was very frightening and proved that no one can manage dad's care by themselves anymore). We can't expect dad to stay in one place during the times between the carers' visits, and having two of us at home at all times is an impossibility with work/families. None of us know what to do for the best. We know what we want, but we realise that what we want might not be what's best for dad or for any of us.

It sounds as though you've had to go through a lot of heartache. I hope your mum's health stays strong for both your sakes xx

Omg we all go through hell dont we , stuff you dont read in text books .
Have thry suggested hoisting dad? Ots and physio in community worth phoning for assessment . Lots of aids they could try your dad with.
Mum coming home Thursday so mixture of excitement and anxiety. Lost a lot of skills being in hospital, hoping to pull back some , even all of them.
25 pts in ward in 5 bays and side rooms, night staff ratio is minimum, and 3/5 in mums bay have dementia. People without capacity have no chance , too much paperwork .....
Xxxx

 

[Ellaroo]

Just a thought i complain on behalf of mum more than ever now as her dementia advances .
Made 5 complaints to hospital and discharge planners. Mum cant do it so I have to stop vulnerable woman being taken advantage of .
Some nurses like everybody to be in bed at 7-8 ,mgive lots of hints but mum is wary of getting into bed as cots sides stop her going to toilet in night . I am certain she realises she is trapped. Seen it with another pt who wanted to go toilet and said youve only justbasked to go to bed and you need to rest your legs .... Walking away xx

 

[Ellaroo]

Mum was put in chair 34 cms high, after i complained now in chair ht 54 cms.
Left wet in chair and was cleaning it up herself when i arrived on ward. Mum at risk of falls ... I could go in.
She is coming home tomorrow , thank goodness