Sister caring for husband

[Hunnyb22]

Hi...I've joined this forum as I'm worried about my sister. Her husband was diagnosed with Alzheimer's six years ago and has become violent towards her, although, he never was before the illness. He's 80 and she's 77 and she's at her wits end. She has told his GP and the psychiatric nurse about the violence but nothing has been done to help her.

Any help would be greatly appreciated.

 

[jenniferpa]

Hi and welcome to Talking Point.

I am appalled that your sister has reached out for help to the very people who should be helping her and they have failed. Just because it's the disease does not mean that she should have to live with the threat of (or actual) violence.

Do you know if they made any suggestions? I wonder because often what would be done in this situation is the person concerned would be taken in for assessment while they try medication to deal with this. Now if the person was unwilling to go, they would have to use a section, and this is where the system sometimes breaks down: when a spouse is told their husband might have to be sectioned, they back-pedal rapidly. Do you think this could have happened?

If it wasn't even suggested I would say that your sister should first go back to the medical people and say that she needs him to be assessed if she is going to continue to care for him, and if they still don't listen she should either call emergency social services, or even, and I'm sorry to say this, the police.

No one, no one should have to live in fear of violence.

 

[Hunnyb22]

Hi Jennifer...Thank you for replying so promtly. As my sister has been the sole carer for her husband for the past six years, she now feels she can no longer cope, so she would not have refused their help. The NHS and Social Services have said they like to keep the family unit together for as long as they can.

When first diagnosed, the doctor told my sister there are three stages to the illness but he would die of other health issues long before he reached this stage. With the violence, it seems he has reached the third stage already, however, I'm not a doctor.

My sister said her husband was never a violent man before the illness but he could be verbally aggressive at times. She keeps asking me to visit her as a distraction to her problems, I have visited twice this week and he has waited until I have left before he has become aggressive. A few minutes later he has forgotten what he's done and can't understand why she's so upset.

No, no one should live in fear of violence, it's the unpredictability of it that's more scary, if she notices the signs she can get out of the house and away from him.

 

[jenniferpa]

The NHS and Social Services have said they like to keep the family unit together for as long as they can.

Well bully for them: they don't have to live with it do they.

When first diagnosed, the doctor told my sister there are three stages to the illness but he would die of other health issues long before he reached this stage. With the violence, it seems he has reached the third stage already, however, I'm not a doctor.

This is the same doctor who has refused to act on her concerns?

I'm sorry to say this, but I don't think this doctor is entirely on the ball. For a start, it is generally accepted that there are more than 3 stages (not that it really matters since there is not a set time frame for this) and while it might be true that people die of other things, it's also fairly common with improved health care for people to live many, many, many years after a diagnosis and then die of complications due to AD (often pneumonia brought on by the dementia causing an inability to swallow). In actuality, I think violence can occur at any stage. Often it seems to be a response to frustration, but at other times it can be trigged by delusions or hallucinations. Whatever causes it, it's happening and she shouldn't have to live like this.

Is there a consultant somewhere? Because she might get more help from there (although if you say the psychiatric nurse won't help, maybe not).

Tomorrow I have no doubt that many more people will respond, at least some of them having personal experience of this very thing (I know one of our Moderators has had to deal with this).

One thing I think you should help her do is set up a safe room where she can go - a room with a lock and a mobile phone, or a bag with house and car keys and a mobile in it plus money in case she has to flee the house. I know this sounds scare mongering but you never know when this might involve a weapon.

 

[Hunnyb22]

Hi Jennifer...No, the first doctor was attached to the hospital, the second doctor is her husband's GP. My sister said that the psychiatric nurses hands are tied and has to speak to the consultant before making a decision.

She went to her own doctor because she was stressed and nothing was done because Joe wasn't the doctor's patient. So, she went to his doctor (different surgeries)and he didn't do anything either, so the whole system has let her down. What will it take for them to do something, him actually killing her? He tried strangling her twice, the second time, she nearly passed out but he let go of her and she regained her composure. The only option I can see is to have him sectioned. How far would he have to go for this to happen though?

You're right, she needs a safe place to go when he turns nasty and I'll certainly tell her what you've suggested, thank you for your help. Unfortunately, she doesn't drive, and the car was taken off him when he was diagnosed. However, their son lives ten minutes walk away from them, she could go there.

 

[jenniferpa]

This gets worse - he has actually tried to strangle her and they don't do anything? That should be more than enough. Would she call the police? It's the only thing left I can think of: they would have a duty to remove him although it's not the ideal way to go about it as he needs to be in an assessment ward not locked in cell.

While it's true the nurse needs to consult the consultant, that should take an hour I would have thought - not what appears to be days or even weeks. She needs to get on to this nurse (or the consultants secretary) and tell them that either they remove him OR she will be decamping to her sons which will mean that a vulnerable adult will be left alone. No pussyfooting around. And if she can cry on the phone that wouldn't be bad either (she probably will anyway, but this is not the time for the stiff upper lip).

 

[Hunnyb22]

Hi Jennifer...Yes, my sister said he actually tried to strangle her twice. Had she tried to resist I'm sure he would have succeeded, however, when he realised she was semi conscious he released his grip.

I'm not sure that she would call the police, for fear he would retaliate if they released him. When I speak to her next I'll suggest the police, if she believes he'll be sectioned and can no longer harm her, I think she may relent.

Staying at her son's would be an act of desperation for her as she wouldn't want to put him to so much trouble. I would certainly try to get the consultant to help though, after all, thats what she's there for. Leaving him on his own for a while might make the authorities get their fingers out and help, she's worried that they'll say she's neglected him, what about them neglecting her!

 

[Grannie G]

Please ask your sister to insist her husband is taken to a place of safety even if he has to be sectioned. However contrite he is afterwards, during these episodes he has no control over his behaviour and your sister is at risk.
If he is sectioned, he would not be released to retaliate if it would be considered a possibility . If the worst came to the worst she would not have to accept him home if she was afraid of him.

 

[Cl13]

Hi Hunny, this situation cannot go on, your sister needs professional help, now,
She needs to write to his surgery manager and tell them they have a duty of care to her husband,
Remind them that they are in a position to speak directly to his consultant, if he has had a diagnosis he certainly has a consultant.
She should say she's afraid for her own safety and that if something is not done immediately to have him admitted to hospital for assessment resolve this problem she, will, contact other services directly, ambulance, police, and if she is unable to leave herself in this danger, she will have to leave him alone, a vulnerable adult unable to control himself.

Take care.

Love Lynn.

 

[Helen33]

Hi Hunny

Welcome to Talking Point. I am so pleased for you that you were able to 'talk' with Jennifer in the first instance. Personally, I feel this matter needs dealing with immediately and letters of complaint need to be sent as soon as possible.

If you feel that your sister would benefit from additional support, I wonder whether you could suggest she contact either the local branch of the Alzheimers Society or the Carers Federation. Either of these places will offer support groups and this could help your sister feel empowered to deal with the current situation and the situations that lay ahead. I know that we have two sisters at our support group and maybe you could think about attending with her for support if that's what she would like.

It is important for your sister to know that she has a right to the help that is out there and to encourage her to do all that she can to get that help. I don't personally like to complain but I have had to write letters of complaint in order to get the services that my husband needs and it has been surprising how quickly things then changed for the better.

Wishing you both well.

 

[Hunnyb22]

Hi ladies...Thank you for your replies.

My sister went to a support group for about three weeks but sitting around talking to other carers, she felt that wasn't helping, there was nobody there in her position, most of them were looking after their parent and didn't have them 24/7 as she has.

I spoke to her a few minutes ago and she said they're going shopping, he's in a good mood, which makes her think that he's not that bad. I mentioned that if he ever was violent towards her, to ring the police. What she worries about mostly is that, if he throws her to the floor, she might break her hip and may not be able to get up again. The phone is in the hall and he doesn't like to use it (she doesn't have a mobile)she could be laid there for hours.

When she's at a low par, she feels depressed and neglected by the system (that's when she rings me)and that they're not doing enough for her. However, when she feels better she makes excuses for him and feels it's through her own frustration and actions that he reacts the way he does. This makes my blood boil because she doesn't seem to be doing anything to help herself, the words "horse and water" seem to apply in this case.

Thank you all for your help and I hope my sister sees sense and does something to help herself very soon.

Kind regards
Hunnyb22

 

[Grannie G]

I know you are very worried about your sister Hunny but don`t be too hard on her. I know just how she feels.
When my husband is `with` me I feel a deep compassion towards him and am so sorry and upset he has to put up with this awful illness.
When he`s a pain in the neck, he gets on my nerves and I could willingly walk out of the door and leave him to his own resources.
And this is probably the conflict your sister is living with.

 

[Nebiroth]

It's really quite incredible that the NHS and Social Services are allowing this situation to continue.

I don't know, is it possible that they don't know the whole picture? I know that people are reluctant to fully admit to these things if they fear that a loved one would be "taken away". Yes, both services will attempt to keep people together if at all possible and this is very often at the insistence of the very people in the situation. Sad to say, if there is the slightest indication from your sister that she can cope, nothing will be done.

In the meantime, I can only suggest that your sister set up a "safe room" that she can retreat to - it should be equipped with a stout door, a strong lock, and a telephone. She should not hesitate to call for the police if she feels threatened. She could also consider having one of the alarm systems fitted (you wear a pendant and just press it, which calls an emergency response centre); many councils offer these at a discounted rate.

I think that violence can happen at any stage of the disease. It can happen due to personality changes, or through frustration, or because of delusional beliefs, or because self-control is gradually forgotten as the sufferer literally returns to childlike behavior (but with the strength of an adult).

As there has been actual violence with attempts to strange your sister on two occassions, this is very serious. Your sister must insist that action be taken.

Actual physical violence would be strong grounds for a section order.

As a relative, you could contact social services yourself and express your concerns.

 

[Hunnyb22]

Hi all...Thanks for your comments.

At the moment (at least the past few days) he's been behaving himself and my sister feels much better in herself. It's the last few months that he's become violent towards her, before that it was verbal abuse.

I agree with you Nebiroth, they are child-like and seem to have no inhibitions or self control.

Yes Grannie G, like you with your husband, she gets frustrated with him too at times, especially when he repeats himself and hides door keys etc, she feels that she's provoking his outbursts. I guess you can't live with this situation 24/7 without being frustrated and angry at times? It's not the person you're mad at but the disease, and feel it's so unfair that they should end up like this.

As for contacting the Social Services myself, I don't want to go behind my sister's back, would they listen to me? However, I'm not sure when he'll erupt into violence again and don't want her to be in any danger.

 

[Helen33]

Hello Hunnyb, Sometimes it is easier to put things into place when the situation is not an emergency. If it is a crisis situation then the crisis needs dealing with immediately and the underlying issues get put to one side. As it is not a crisis at the moment, this could be a good time to calmly and gently talk to your sister about finding ways to safeguard her for when another crisis occurs. There will always be things she can't do (or won't do) but there are things that she might be prepared to do. For example, could she find a way of having a lock or bolt put on one of the rooms that she could try to use if she feels in any danger? If she doesn't use a mobile phone or have one, could she get one and learn how to use it. They are not expensive things these days and she could use 'pay as you go' and my £10 worth lasts months!!

I think she might be more likely to implement some of these changes if she is not frightened into doing them but just a precautionary measure. Maybe you could take her husband out one day so that she could have a bolt fitted on the door. If the frame is white, then the bolt would need to be white, and that way her husband is likely not to even notice it is there. Also he doesn't need to know that she has a mobile phone.

Any little change towards trying to keep your sister safe is better than nothing.

Love

 

[Hunnyb22]

Hi Helen...Thank you for your help.

I appreciate that hiding things isn't an important factor but when my sister is at the end of her tether, these things infuriate her, and I can understand why she would be exasperated when her husband loses keys or hides things, she feels it's the final straw.

I've suggested that she goes for a walk (alone)when she feels things are getting tense, just to defuse the situation, which she does occasionally, but more often than not, he wants to go with her.

Yes, I have mentioned to her about finding a safe place to hide when he goes into a rage, she could have a bolt put on her bedroom door. Her worry would be, if he found the bolt, he could lock himself in, and in a confused state, didn't know how to unlock it. She seems to be more worried about him than her own safety, in his "good" moments he's very caring and she's deluded herself into thinking he's back to normal and won't do anything. However, the times he goes into a rage she's very upset and wants him taken away for good. He's very contrite after the situation ends and doesn't understand why she's so upset, when she tells him what he's done he doesn't believe her, he goes into another rage and calls her "a f*****g liar and other obscenities."

One measure I have taken is, I've sent an e-mail to the police asking for legal advice on this matter, explaining his illness and their ages. However, as yet, I haven't given any names, it's just a general inquiry. My sister wouldn't be very happy about my taking this step, but as I said before, I worry about her health and well-being and if this happened again, I would ring the police myself on her behalf.



Kind regards
Hunnyb22

 

[Grannie G]

My husband did lock himself in our bedroom on one occasion. I think he thought he was in a bedsit. I let it be, knowing he was safe for the night and slept in the spare room.
He unbolted the door without problem the next morning.
The bolt is now covered with white sticky tape and he has never noticed it.

 

[Hunnyb22]

Hi Sylvia...You did the right thing by leaving your husband in the bedroom, as you say, at least he was safe there. They eventually find their way out of sticky situations don't they?

How long has your husband been ill? Is he still living with you or is he in a care home? Sometimes, the partner feels they've already lost the person they married and they're living with a stranger, is this how you feel?

I think the time has come for my sister to put her husband in a care home before any serious damage is done. The stress of caring for him has already taken it's toll as she often passes out. There's no other physical reason for her dizzy spells as she's been checked over by her doctor.

Kind regards
Chris

 

[May]

Hi Hunnyb

Could I suggest that you show your sister at least some of the replies on this thread? She would maybe understand from the replies that her situation is not unique and that her husband does need assessment and she herself desperately needs help. Hoping you can find a solution to this. take care

 

[Hunnyb22]

Hi May...Thank you for responding.

I joined this site unbeknown to my sister. She's a very private person (as we all are)and would hate to think others knew of her situation, outside the medical profession that is.

I also needed legal advice, so I emailed the police yesterday. They replied to my email this morning. They said that if they had to intervene in my sister's case, all they would do is take her husband to the police station, where they would ask a doctor to assess him, this would be done under the "Mental Health Act." The police have stressed that she must call them if her husband becomes abusive towards her again and they'll take the necessary steps to safeguard her.

In our family, to have the police come to your door is a shameful thing (our parents instilled this in us from an early age) and that's one of the reasons why she would be reluctant to call them, the main one being that she wouldn't want to frighten her husband.

Thank you once again for your concern.

Kind regards
Chris.