New and desperate for advice

New to Carers Connect
1

Hi everyone, I’m new here and quite simply desperately in need of advice. About three years ago my mum (now 62) had a catastrophic brain haemorrhage out of the blue. She is now not paralysed but extremely weak, unable to walk, doubly incontinent and not independent at all. My dad is her sole 24/7 carer. To say this has taken a toll on him is a grave understatement.

When she was in hospital he was at her bedside for 12 hours a day, every day, without fail, for 10 months. He was a nightmare for the staff as he was constantly nit picking, controlling, questioning, arguing - all in the name of “protecting” my mum but really was just a symptom of rapidly worsening OCD and PTSD.

Since her release from hospital things have spiralled. He is ever more controlling, manic when it comes to doing things “the right way” consistently - to the point where putting her butter knife on the wrong side of her breakfast plate will cause him to intervene and comment - and he cannot cope at all. He hasn’t been coping for at least a year. I can’t adequately say in a short-ish post on here how worried I am about his mental state and my mum’s as a result of his “care”. He is, basically, militaristic with her to the point where every single day she is in floods of tears with the way he battles with her to get her to walk, stand, balance, exercise, everything. He routinely says “you had a brain injury, there’s nothing wrong with you now so stop being silly/stupid/pathetic” etc.

I have tried everything to help - I brought in agency carers and after three days he sent them away because they weren’t doing things his way. I got my own friend, a private care nurse, to go to them to help them and she has received barrages of aggression from him when she has made innocent and simple human errors, or has called him out on his bad attitude which isn’t helping my mum. I have battled with social services to get them respite but when it comes to him putting in any effort to finalise things, he won’t, then refuses to re-engage. Their GP put a referral in to social services when my mum divulged that he is physically aggressive with her - this was eventually dismissed by social services as they set up a respite contact who never actually materialised. Now it seems the aggression is coming back with my dad having divulged himself to my previously mentioned friend that things are going wrong and he is losing his temper.

In the past he has vehemently, angrily berated me for not doing more and insinuates that his stress levels are my fault for not being there to care for her. I’m 27, a full time secondary school teacher (as is my fiancé) living over an hours drive away. I have stayed over and I visit regularly but it is impossible to be around him. I have looked into care homes in the past but he has outright refused to even discuss it. I am at the point now where I am so worried about him and my mum both, that I am ready to call social services and register a serious concern anonymously and see if she can be forcibly removed from the home even for a few days for respite, because I truly believe someone is going to be hurt or my dad is going to harm himself if something doesn’t change.

I am at the end of my rope - as I’m sure my dad is, as he keeps reminding me - but he simply refuses any help I offer, especially care homes because “we’re not entitled to anything, we have too many savings, nowhere will take her, we can’t afford it, she’s not going anywhere” etc.

Apologies for the lengthy post but to be honest it feels good to get it written down somewhere where people might understand and be able to offer advice.

2

Off the top of my head … this act jumps out …

When someone makes a safe guarding compliant. Things have to be investigated and implement to make all concerned safe.

I think this is a good starting point. Unfortunately, I think it sounds quite difficult to deal with you father.

Best course of action is to ensure your mother is safe.

3

Hi Joelle,
I am so sorry for everyone concerned in this situation. From what I have understood from your post, and please forgive any misunderstandings;_
Your Mum is helpless, cannot even walk and is trapped with a controlling bully who may have MH issues and won’t accept help.
Your Dad is trying desperately to cope with double incontinence, a very dependent caree and is at the end of his patience (if he ever had any) and his pride and self belief won’t let him accept any help because he believes he knows best in all matters relating to caring for Mum. It’s his ‘duty’, his ‘responsibility’ and everyone else is in the wrong. Perhaps he fears that he will be seen as ‘failing’ or will be criticised if he allows her to go into any kind of respite or home.
You are trying very hard to help, are being rejected and brushed off because Dad seems to think that you should give up your life to come and be the dutiful daughter and take over Mum’s care. DO NOT do that because then more lives will be ruined.
Your husband must be very anxious about you and the stress this is putting you under. All this won’t be much fun for him either.
A desperate situation.
Some suggestions which may (or may not) help.
Urgently on Monday get in touch with Age UK (Age concern?) and have an interviews with them to see what they suggest is the best way forward.
Maybe CAB too.
Play on Dad’s sense of entitlement. He has paid his taxes, he is due help from Continence nurse, occupational Therapist, Social Services etc. It’s not charity or failure, it’s what he has paid for.
Play on his sense of responsibility. He must get any help for Mum (and himself) that he can, whether or not they are ‘perfect’ in his eyes.
Also, if you are convinced that Mum and Dad are suffering in their present circumstances then that Safeguarding route might well be the way to go. Something might have to be done before Dad does something he regrets or there is a massive crisis for one or the other.
Does Mum have capacity? What would she like to happen?
I expect it feels like betrayal or ‘shopping them’ to call in authorities but if Dad won’t or can’t see the necessity of accepting help and you can see the deterioration in their situation, maybe that is what you have to do for everyone’s sake.
I wish you well.

4

To me, dad sounds very frightened of the future. None of us can change the hand we are dealt with in life (I’ve had too many operations and lost too many relatives too early). All we can do is the best we can with the hand we have.

Maybe you’d have more success dealing with dad if you stress what mum NEEDS. She needs a happier husband to be with her on her journey through life, not an exhausted unpleasant husband who shouts at her. If he gets ill, there is no alternative to residential care, so he has to look after himself much better. Accepting more help, taking more rest, because at the moment he’s heading for a nervous breakdown, stroke, or heart attack. I do think you need to be a blunt as this.

Maybe carers don’t do things the way he likes, but they are there for mum so he can take a break and rest.
Is he accepting help with cleaning the house? This would be a good place to start. Does he ever have a day off?

5

Wow, sounds like my life.
Has your dad always had controlling issues? Happy chappy when all going well, in his own environment. Well liked by everyone but different at home? If so, look up narcissism and frontotemporal dementia. That’s what I think my father has. A man who is simply always right. A bully.
I’ve started to secretly video or record stuff so he acts naturally as opposed to publicly. Collect evidence. They both need help, like it or not. How on earth that happens without upset I have no clue, but you and I are on identical paths just now. Weirdly, I’m glad it’s not just me. I’ll be posting updates and keep in touch. As I say - get your armour on and ditch the guilt, your heart is true.