I couldn’t cope caring for with my husband at home but I can’t cope with him being in permanent care

[Fanras]

My husband aged 63 who has had early onset Alzheimer’s for 4 years now tried to punch my 16 year old son and grabbed and kicked our 14 year old daughter thankfully I was at home and when I heard the shouting and screaming ran in to the room and intervened and calmed him down and told my children to keep away from him whilst I rang the critical care team for guidance who after failing to find respite as no care home would take him with now an incident of aggressive behaviour and also he gets up out of bed constantly through the night he was eventually sectioned under the mental health act 2.
I’m devastated and want my husband back home even though I was struggling looking after him, my children, my home and working part time to make ends meet. I want to manage the situation maybe with the right medication to stop his bouts of aggression and for us all to get a good nights sleep I will be able to continue maybe a few years longer; but my family and close friends think he should remain in permanent care. I can’t come to terms that he might not be coming home and I will only get to see him on visits if he remains in care. It’s mental torture seeing him deteriorate too soon by this evil disease. Please can anyone who has been in the same situation share their experiences with me if they have managed to enjoy life once more even whilst their beloved partner is to remain in care until they die as I feel like my life is over I‘m only surviving for the sake of my children.

 

[Sarasa]

Hi @Fanras, I'm sure others who have been in this situation will be along shortly with their experiences, but I didn't want to pass by without welcoming you to Dementia Talking Point. This is a very friendly and supportive place and I'm glad you've found us.
I wonder if chatting to someone from the Support Line would help?

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

 

[Violet Jane]

@Fanras, I'm so sorry to read your post. It's heart-breaking for all of you. Is this the first time that your husband has been aggressive verbally or physically?

I do think that you need to prioritise your children over your husband. Social Services may insist that your husband move out if they think that he is a danger to your children.

 

[Grannie G]

Hello @Fanras Welcone

This is the most distressing situation for you and your family Sadly there is no solution at this stage to meet everyone’s needs.

It is possible once your husband has had a spell in the unit his behaviour may be stabilised and he can return home to you and your children.

Don’t give up on this happening. He is young and may well respond to treatment even if it takes a while.

I’m sure he would be horrified pre dementia to think his children could be afraid of him.

It`s early days yet but try to have a word with the medics who are caring for him and tell them you would love to have him home. Perhaps they will give you hope

 

[Jaded'n'faded]

It's good that he has been sectioned because he will now get a full assessment. The doctors will try meds to address the aggression though it can take time to find the right drugs/dosage. Once he is stabilised, a Best Interests meeting will be held to decide whether he can go home or if he needs residential care.

So he might be able to come home. Equally, he might not. Early onset dementia often progresses quickly and although drugs may help his moods, he's never going to get any better than he is now, only worse. I suppose that's the part you have to face now. Please don't underestimate the effects all this will have on your children - they are entitled to a decent life and having their father attack them will have left them really upset, possibly traumatised. (Can you arrange counselling for them?) They've been living with a father with dementia for a few years now - how does that affect their life? It must be incredibly difficult for them and I would honestly think twice about your husband coming home even if it were possible.

 

[jaymor]

@Fanras My husband was diagnosed at 62 and went into nursing care 7 years later. My husband too was aggressive but only to himself. Trying very hard to rid himself of the disease and us as a family of our world.

He was admitted to an assessment unit and spent 9 weeks there, they worked very hard, his aggression and wanting to self destruct diminished but I was told after just two weeks that he needed to go into care, actually with 1:1 care 24 hours a day.

I was devastated and wondered how either of us would cope after 45 years together.

We did survive and we did for another 4 years and it really was our salvation. I visited daily for an hour if he was agitated up to 4 if he was fine. In those hours I lived in his world and with no physical care or work to do I became a wife again and he became my husband.

I still had many hours of the day back in our world so got on with life, started seeing friends again and visiting family. I really had the best of both worlds. I continued to watch that everything was fine in the nursing home because I was his eyes, ears and voice when necessary, which was not very often. The other men on his floor got used to me and the staff were able to ask me anything they needed to know about my husband. I really felt part of the home.

If it does come to be that your husband goes into care, with the right home once he has settled you will both have better lives and you will worry less about the effects this dreadful disease is having on your children.

I hope that your husband will respond well to being assessed and you have a smooth onward journey.

 

[Dunroamin]

What a sad situation.

I do think that @Violet Jane VioletJane is right though. Your duty is to protect your children and provide a stable homelife for them What you want is a different matter altogether.

@jaymor talks about having the best of both worlds - and you can have this.

I wish you well.

 

[jugglingmum]

Please don't underestimate the effects all this will have on your children - they are entitled to a decent life and having their father attack them will have left them really upset, possibly traumatised. (Can you arrange counselling for them?) They've been living with a father with dementia for a few years now - how does that affect their life? It must be incredibly difficult for them

My children were 8 and 12 when my mum got dementia, I know they found some things very hard to deal with, and didn't like grandma much anymore. My mum's behaviour wasn't agressive or violent but she could be nasty and I wish with hindsight I had handled things differently. Based on other experiences my daughter has had (sudden heart attack death of a close friend and bullying) she found counselling very effective, please sit down with your children and explore this option.

I do think that you need to prioritise your children over your husband. Social Services may insist that your husband move out if they think that he is a danger to your children.

Please think about your children and their best interests in all this. If you haven't already done so please contact the school/college and ensure form tutor and head of year are aware of the situation.

Unfortunatly social services do not join up so adult/elderly services do not work with children's services. If children's services get invovled their only responsibility is to your children, and their solution might be to remove your children from a dangerous situation, and might take your youngest into care. I have read about this happening on the forum previously.

 

[Violet Jane]

I was the person who wrote about a friend whose children were nearly taken into care. In that case her husband had mental health problems rather than dementia and my friend inadvertently got Children’s Services involved who, as @jugglingmum has said, were only interested in the children. She didn’t want her husband to move out - she just wanted help for her husband - and her children were on the verge of being taken into care because she wouldn’t go along with what Children’s Services wanted to happen. She had reported that she was worried about her husband driving the children around and worried about the knives in the house. He was also emotionally abusive to her. Not surprisingly, SS felt that there was a safeguarding issue with regard to the children who were all minors.

 

[jugglingmum]

The instances I was thinking of were several years ago, one was a grandparent with dementia in the same house as a young child.

Schools are legally obliged to report to social services if they think there is a child safeguarding issue.

 

[Fanras]

Can I thank everyone for taking the time to respond to my plea for help, some l must admit was hard to accept but I know my children’s safety is paramount.

This is the latest update about my husband-
Mental health act section 2 has been removed and he has been issued with DoL’s as since being in hospital he has responded well to Risperdone, he has shown no signs of aggression, not as restless throughout the night and they do not consider him a danger to himself or to anyone else.
I have a meeting with his consultant tomorrow and his older brother has requested to be part of this meeting his view is that he should be in full time care.
I believe the meeting is to either possibly explore a care package at home or be told full time care is the only option for him.
I have discussed the possibility of my husband coming home to our children and we have had a honest frank conversation about it and they both want their Dad to come home if he is allowed.
If I am told tomorrow he can come home that’s what I will do against his bro wishes, but can I be clear that my children’s safety will always come first especially if I feel their home environment isn’t a safe place with their Dad being there.
However, what I am struggling with the most is what affect on my children’s mental health will having their Dad living back at home who has Alzheimer’s now he is at mid-late stages?

 

[Jaded'n'faded]

Your children love their dad, of course they want him home. But that may not be the best thing to do. It's hard enough for adults (who have a far wider experience and understanding) to deal with some of the behaviours dementia can produce but children tend to just bottle up their feelings. To them, sending dad to a care home is probably unthinkable - what do they know of care homes or why they are so necessary? They will only see negative things simply because they are too young to understand the complexities of dementia and unfortunately, care homes are seen as 'bad places'. They are not.

If your husband had any other terminal disease that meant he needed more care than you could give, would you still keep him at home and deny him that care? I doubt it. What will you do if he becomes aggressive again? If he hurt one of your children, would you ever forgive yourself?

If I am told tomorrow he can come home that’s what I will do against his bro wishes, but can I be clear that my children’s safety will always come first especially if I feel their home environment isn’t a safe place with their Dad being there.
However, what I am struggling with the most is what affect on my children’s mental health will having their Dad living back at home who has Alzheimer’s now he is at mid-late stages?

That sounds like you're saying you'll give him another chance but if he hits them again, you will act. Battered women say this.

This is only my opinion but I honestly think living with a loved one who has dementia is not something young people can easily cope with, even if they seem to be handling it well. Please don't have him home. If he was in a care home, your children could visit him there without all the trauma.

But what about you? Your original post says how much you are struggling to manage him, your job and your home/children, not just due to the aggression but because he was up all night so you were not getting any sleep. That's unlikely to change so how will you cope? I know you desperately want him home - I completely understand that, but the situation you describe is unsustainable. You can't be watching out for him 24/7 and do all the rest. Something has to give.

 

[LynneMcV]

I can only speak from my own experience. My husband had early onset dementia, diagnosed at 58 (though showing signs as far back as his 40s). Four years after diagnosis we found ourselves in a similar situation to you, where his condition deteriorated - culminating with him attacking our son at home.

My husband went into a secure mental unit for a couple of months, where his medication was stripped back and started over until they found out what worked best for him. Fortunately, he was brought to a point where he could return to the family home.

We enjoyed a further two years of family life - there were a few downturns along the way, but we coped. Sadly (but not unexpectedly) his condition then deteriorated further, the meds ceased to work, and in a fit of paranoia he hit our daughter.

He went back to a secure mental health unit, but by this time he was in the advanced stages of the disease and nothing could be done to bring him to a point where it was safe for him to return home. As it was, he died before a planned move to a nursing home could be finalised.

Personally, despite the ups and downs, my son, daughter and myself cherished those two extra years of home-life that we managed to enjoy after his first sectioning. However, we also recognised when we had reached the point of no return.

I hope you do manage to enjoy a bit of extra family life at home now that your husband's meds have been tweaked and his aggression has calmed. However, I also know that the safety of your children will always be top of the list and that, when the time comes, the right decision will be made.

 

[canary]

I think that if you accept someone who has been sectioned because of physical aggression back into a home with children, you have to be very clear headed about the dangers.

There will come a time - which might be a couple of years, or it might only be a couple of weeks - when the meds do not work anymore. You may find that he is OK, or you may find that bringing him back into the same situation brings out the same triggers. When that happens you will need to be very objective and not let your love for him, guilt, or feelings that you cant bear him moving into a care home, cloud your thinking and give him the benefit of the doubt. You will need to act straight away.

 

[Bod]

No, he stays in Care.
If he had a more exciting illness, then staying in hospital would be the only option, you and the children would visit.
There are too many things that can cause a dementia sufferer a quick downturn, with his history then for your and the children's sake, safety is paramount.
The children are old enough to understand the illness, and it's effects on their father.

Bod.

 

[Dunroamin]

So many red flags here. You cannot ask your children what they would want. As a mother responsible for them you make the decision on how best to protect them.

@canary is absolutely right that there WILL be a time when problems arise again - and who know when that will be. As a PWD myself I am still (just) able to take a pragmatic approach to your situation.

Your OH needs to be settled in a safe environment, your children need to see home as safe and inviting and visits can be made as appropriate to wherever your OH will be.

Sorry if this is confrontational for you. It is easier looking from the outside sometimes.

 

[Violet Jane]

As you have said, it's not just the risk of further aggression but the whole home environment that you have to consider. I think that it's very hard for your children to say that they want their father to move into residential care, and that it has to be your decision as the parent. There are so many factors e.g. your children's ability to study, to sleep properly, to bring friends home and to socialise in the normal way (will they be needed to supervise your husband at times?). How available will you be to them practically and emotionally if you are trying to work, run the house and look after your husband, all on very little sleep? These are important years for your children and they can't get those years back.

If you bring your husband home then I personally feel that it should be on the basis that the arrangement will be subject to constant review rather only alterable when there is some sort of crisis. I would also look for day care and / or a companion for your husband to give the family breaks and your husband stimulation, which might help with his moods. If your husband is physically fit, which he is likely to be at his age, then he probably needs regular exercise, and perhaps a friend or companion could take him for walks, to play golf, go swimming or to some sort of a club (eg Men's Shed or a gardening club). Don't feel that you have to do it all yourself. That's not possible and if you try you will break down. Get as much help as you can, from the wider family, friends, befriender volunteers and paid carers. Be demanding with Social Services and the Health Service.

 

[tiredspouse]

My husband has just completed his assessment and we have a young child at home. The assessment indicates he needs 24 hour care. He was never aggressive towards our daughter, yet I was advised if I insisted he return home they would be required to raise a safeguarding issue with social work. If you're lucky you'll find someone to tell you straight as they did to me. It took that view to force me to accept the reality regardless how much it breaks my heart. As one nurse stated and a previous comment alluded to, it may be time for you to go back to being his wife not his carer and enjoy your remaining time in the role he wanted for you. Just take a minute for you to let yourself think. You'll do what's right for your family.

 

[Firecatcher]

Please think very carefully about taking your husband home and the potential impact of his behaviour on your children. It’s also a lot more difficult to get help further down the line when there’s a recurrence if the problems that led to him being sectioned. In hospital he has an entire team of people looking after him so early warning signs of an aggressive episode occurring can be identified before the situation gets out of control. It’s not easy managing this in a home situation as you’re not trained to manage this kind of behaviour. When there’s a team of people managing violence can be done in a way to minimise the risk of anyone getting injured. It’s quite possible your husband won’t comply with his prescribed medication once he’s home as people do behave differently in a clinical environment. Where will it leave you if he stops taking his medication or it stops being effective.