Mum and Dad still in court at the most wonderful time of the year - update

[KMH]

Hi there

I posted about six weeks ago because my 81 year old mum, mild cognitive impairment, frail, mobility problems and partially sighted, has taken my 82 year old dad to court to get an order preventing him from returning to their house. She has done this because he punches at her, kicks at her and verbally abuses her in quite an extreme way, he is also very controlling, monitoring her phone calls etc. This has been getting steadily worse for about 5 years and included 2 police arrests and charges for assault which were dropped by the CPS due to his age. He is in sheltered accommodation temporarily with his own care package until things are resolved. Up to three years ago she was caring for him following 2 strokes, now her health has broken down completely and she has carers 4x daily, which was often a focus for his rage when they were living together. As I now have LPA for her, have found a solicitor and drafted the statements, I feel quite personally responsible even though I have been repeatedly advised by professionals there is no other way.

I was wondering whether people thought this behaviour was likely to be due to dementia or plain old domestic abuse (the view taken by all professionals up to a few weeks ago, based on the fact he has always had a nasty temper and there had been previous incidents of violence many years ago, plus his cognition in early 2014 was fine). Dad was due in court on 9th November but I was getting worried about his own mental state, as was his social worker.

I received wise and compassionate advice, as I always do, which is why I have been occasionally coming back over the past three years. Life is very busy though, I combine full time employment/ self employment with visiting them 2-3 days a week (they live 50 miles away) so I cannot come as often as I would like, plus as mum's problems are classed as MCI and dad has never been diagnosed with anything except small vessel disease, I am never sure whether this is the 'right' place.

Dad was due in court on 9th November, a LOT has happened since that time, which is partly why I haven't had time to come back. A week before his court date, Dad was picked up by the police some time in the late evening as he was reported wandering around near the GP surgery (and a busy dual carriageway). He was clearly very confused. A few days later he collapsed and was taken to hospital where he was treated for a UTI and had a Pacemaker fitted, which he had been resisting for many years (resting heart rate of 35 but fluctuating a lot). I gave consent at the time as he was judged not to have capacity, he was hallucinating, constantly removing clothing and smashing fittings on the ward. The GP, social services and ward staff also all referred him for specialist psychiatric assessment.

He was an inpatient in hospital on his court date and I was not completely sure whether he was aware of it, although following discharge it became clear that he was. It was just me and the judge, one I had never met, he was not prepared to give the occupation order in dad's absence as he wanted to meet him to be sure it was his decision not to be represented (it was, and social services have capacity assessed him on this specific point). However he accepted there was 'substantial evidence' of risk to mum and upheld the order till 1st September 2016.

Another court Directions Hearing has been arranged for January 18th, this time I have been asked to provide evidence about their finances and housing situation showing what dad's housing options might be if he does not go home. There may not be a need for a full hearing if dad does not represent himself. Quite something for mum and dad to have hanging over their heads at the 'most wonderful time of the year'.

I have discussed the next court hearing with dad, it was a very difficult discussion because he did get enraged but the last time his social worker questioned whether he was really aware when and where it was happening and I am not sure exactly who else the social worker expects to explain it to him. He told me that he thinks if he goes home things will be 'fine' because they have been 'fine' for fifty five years and they manage very well. He thinks mum's injuries have been 'blown out of all proportion', she 'never had any significant injuries that I saw' and no, he does not want representation. The core of the problem seems to be that dad does not think cuts, bruises, barging and verbal abuse are 'significant'.

At all other times his demeanour towards me is very sweet, warm and loving at the moment. He is very appealing when he isn't waving his stick. He seems to be mixing mum and I up.

Mean while a psychiatrist has assessed him and told me he 'does have a dementia'. Just like that, matter of fact. I took him for a more specialised brain scan last week to 'determine what kind', meeting on February 29th to discuss results. I also have to get him a heart test to see whether it would be possible to prescribe an Acetylcholinesterase inhibiting drug, whatever that is. He already took himself off on three buses to get the test because the psychiatrist told him to (she hadn't made contact with me at that point), but he left the letter behind so they didn't know why he was there and just checked his Pacemaker. When that happened I asked via the social worker could the CMHT please involve me and fair enough, she did call me and tell me he has a dementia. However I won't fully believe it until the meeting has happened because part of me still believes the brain scan results won't show anything abnormal (previous ones haven't). Dad's confusion does seem to be getting a bit better as the weeks pass.

On the other hand, mine seems to get worse!

So meanwhile we are trying to have as merry a little Christmas as we can. My husband has been a big support, when mum and dad meet up, which they can away from their house whenever they want (so long as dad is not abusive), I need help really. We have done the Christmas present shop in M&S (ground floor cafe and toilets, blue badge parking and wheelchair friendly for mum) which passed off without incident, have a restaurant booked for Christmas day which used to be a favourite 20 years ago and some kind of a vague plan to meet up for tea on Boxing day if I can find anywhere open.

On the day the psychiatrist called me I saw a photograph of a woman standing in front of a giant tidal wave which seemed to be about to engulf her, which was captioned 'well ... ****`. It seemed to sum up my feelings perfectly. But I know that lots of you have been here, and you were not overwhelmed.

That really helps.

Thank you for reading.

 

[Sterling]

Goodness me what a lot you are having to deal with!! My head is full of worry with just one parent let alone dealing with two and court proceedings!! Please make sure you find time for you and your family. Xxx

 

[Grannie G]

Hello KMH

Whatever the cause of your dad`s behaviour he obviously needs to be kept apart from your mother for her own protection. They are both vulnerable adults and need help at this stage in their lives.

Small vessel disease can cause cognitive impairment which seems likely if your dad reacts so strongly to any challenges in his life however carefully they are presented.

Please continue to do the best you can do for your parents but prioritise yourself and your family if you can, because the help they both need seems much more than you are able to give, especially as you work and live a distance away.

Forget the guilt. Sometimes too much is asked of us.

 

[KMH]

Thank you Grannie G.

The problem is that nobody can or will keep them apart if I don't. That requires a lot of involvement. I don't have children but have been happy with my husband since the 1980s.

My mum will not move closer to me. I discussed this with her yesterday and she is adamant she will not. She tends to be critical of the families of friends of hers who have 'moved away' as she puts it and do not make sufficient long journeys to visit and support their parents. Even if she did, dad would need to move too for it to make sense and I respect their decision not to.

I could leave my husband, shut down my counselling practice (i refer clients to four other counsellors as well as myself at the moment), move in with her and I know some people on here do that. I am tentative about saying this as it may trigger anger for some, but to me the prospect of that taken on for an indefinite period of time would feel as if I was burying myself alive. I am also not convinced they would get the best care that way, and not just because I would probably feel resentful. I am 53 now and by the end of it I would have no marriage, job or life left. We do not own a property so have no security of any kind apart from my ability to earn, my husband is nine years older than me and although he has no plans to retire, at some point he will.

But if I don't - who will? I have no siblings.

The only way I can get through is 'one day at a time'. Hence the tidal wave. I am always aware it is worse for them than me.

 

[Grannie G]

So often there is no solution other than acceptance of an impossible situation. You should have to give up your home, your work or your relationship for your parents. This is where Adult Social Services should step in and offer the support these vulnerable adults need.

 

[canary]

I remember that feeling of "if I dont do it no one else will", but as Granny G says - it is actually SS responsibility.
Small vessel disease can often lead to dementia and it seems to me that often dementia exaggerates natural traits. So if he had always had a nasty temper, dementia could make it worse.
Please, please dont leave your husband and give up your work to go and live with your mum. Your own life is important too and it might not work out anyway.

 

[Bod]

It is clear that the two must be kept apart.
How?
You have LPA, is that for both, Health and Finance, for both of them?
Your mother is frail, when will she need round the clock care?
Dispite what she says(they all say the same "I'm fine, I'm coping!") Is there a care home close to you where she could be?
Your father, is he able to live on his own?
He will need to be assessed for a suitable placement.

I feel for you, its going to be tougher than it already is, but you must take best interest decisions for both of them. Whether they like the outcomes or not.
It is more important that you look after yourself, and husband first. You cannot care for your parents if you are broken.
In one respect you are lucky, you have no siblings to argue with! they often see things much different from a distance of many miles, and no involvement!

Good luck
Bod

 

[CollegeGirl]

Hi KMH. I'm afraid I don't really have any advice, because if it was me, I would have been engulfed by that tidal wave and drowned long ago. I don't know how you have managed like this for so long.

I don't know what to say, other than to implore you not to give up your life, marriage and job for your parents. Just because you don't have children or siblings doesn't mean that you should have to do this.

Sending best wishes x

 

[missmarple]

Hello KMH. You have been coping with such a lot and in such a positive and productive way.
All I can do here is share my experience with my father's aggression. He has AD. He had many positive attributes when well (sociable, witty, energetic etc) but also a tendency to anger, a very short fuse, a terrible listener and I know he bullied my mother all through their marriage, and was hopeless at seeing others' point o f view. Mum died 21 years ago.
Dad's dementia has been of quite a restless type, he was nearly sectioned. His impulsiveness, restlessness and tendency to blow up when provoked all carried over into his dementia. My personal feeling (but i could be wrong and i do not want to offend others) is sometimes dementia just unmasks/ exacerbates what's there anyway.
I think it is positive that your mother is making moves to protect herself and that you are there to support her, i do not underestimate how hard this is on you. It also sounds like your mother expects a lot of you, as some elderly folk do, so I hope you can also protect yourself when it is really necessary.

 

[Slugsta]

What a terrible situation you are in KMH! I don't have any words of wisdom for you, other than joining everyone else in imploring you not to give up for own life for your parents. You are an important person in your own right.

 

[KMH]

Thank you to all.

I know that moving in with mum would be a mistake for me personally although it might be the right thing for others. However the fact is that nobody else will take responsibility. There is no agency ready to swoop in and sort it all out, that is a bit of a fantasy (or maybe an aspiration) so far as I can see, and unless and until dad has a diagnosis it seems nobody is obliged to - and I am not sure even then.

I don't want to be misunderstood, mum's social workers have been brilliant especially the one she has at the moment. But they have all maintained that dad knows what he is doing.

The response from health services, social services and police to this situation is basically to say 'poor you' and keep handing it back to me. Mum has had seven separate Safeguarding inquiries opened because of risk from dad, at one time she was considered one of the 'most at risk' in her borough and yet all it has achieved is brought us here, to mum seeking a court order against dad as the only way of keeping herself safe.

One thing I have realised as I am writing and reading is that I am taking emotional responsibility for the court case because mum won't/ can't. Normally she says she had 'forgotten' about it or thinks that it is being brought by social services or the police on her behalf and that it is 'terrible' and 'wicked' that 'they' have done it. Yet I have asked the social worker to capacity assess her several times to make sure she understands what is happening, and really she does. She knows without it he will be back and she definitely doesn't want that. She wants him to go into residential care, but she has never said any of this to him, which I can understand.

My experience of domestic violence services is that they do not have much understanding of a dementia/ mental health dimension. They seem to take a rather stern line of 'it's exactly the same', but I don't think it is. Health services have been very slow to react, if they had listened when he was first assessed and I wrote to them in early 2014 part of me keeps thinking they never would have had to go through the trauma of arrest and court.

I cannot seem to find many other people who have found a way through this situation which makes me feel very isolated. Many people say to me 'that is so sad, that's no way for them to be at the end of their lives' (even the judge said that) which is absolutely true but absolutely unhelpful, just brings on more guilt.

If dad does get a diagnosis of dementia, things will make more sense to me I think. Personally I believe mum's memory problems go beyond MCI. I think supporting two people with degenerative mental health problems who are married to each other will probably inevitably bring chaos, especially when violence is in the mix and neither of them are able to face up to what is happening.

Thank you once again for listening - and I would love to hear from anybody who has faced or is facing this kind of double impact.

 

[missmarple]

Hello KMH I have been thinking of your post and what might convceivably be done to help the situation. My background is my father has AD, quite advanced now, and has been living with my brother who has mental health problems, so it has been a double package for me to support.
One thing I learnt is there have been stages where i could not manage this situation alone. For example, when Dad started to get engulfed by dementia, bro's mental illness really deteriorated to such an extent that he was not coming out of his bedroom, lost about 3 stone, lost all interest in his personal hygiene etc etc. I was at my wits end and marched along to bro's GP, explained the situation and demanded help (which was very slow in coming, but he got it eventually and is now much better).
when Dad's own safety was at risk through wandering and antisocial behaviour, a crisis meeting was convened by the dementia treatment team and a last ditch package of care agreed which enabled him to stay at home another 2 years.
I think you need to impress upon the powers that be (GP, Social services, psychogeriatrician- the more the merrier) that there are serious safeguarding issues here.
It's too much for you to untangle alone and so the only advice I can give is get the professionals in and don't take no for an answer.

 

[KMH]

Thank you missmarple for thinking it over, (also bod, canary, collegegirl and Grannie G). I am sorry my posts are so long, detailed and exhausting, please nobody feel obliged to respond. I think it is because that is what my days are like!

Missmarple, it is good to know that the care package has worked out for your Dad and brother. Your Dad sounds like he can be a real handful, I do empathise with you and your brother. I don't know much about dementia but I have to say it resonates with my experience that maybe it sometimes exaggerates existing personality traits?Seemingly this may create some difficulties in diagnosis if criteria are based on changed, rather than exaggerated, personality?

Getting to a safe and stable place of 'good enough' for both of my parents is something I dream of although leaving the ongoing court case aside, I am coming to see that they are both closer to 'safety' (from my perspective and probably mum's) than any time in the past 5 years. It is just really hard to see that when the picture in between has included several police arrests, with associated nights in the cells, four appearances in court, a 3 month hospital stay, falls, loss of an eye, multiple spinal fractures, bowel cancer, MCI, heart surgery, a case of crusted scabies picked up on the three month hospital stay (if anybody knows what that is - yes, really) and mum taking dad to court to prevent him from entering their home. Also now the latest looming issue - a dementia diagnosis for him.

Their aspiration is to live independently in their own community and that is what I am trying to support them in doing, for as long as they can. Actually, things are maybe, just maybe, getting better.

When I first started coming onto this Forum in 2012, people said talk to social services, police and doctor. Well, I did eventually, in 2013 when things got really bad but actually it was mum who started talking. This led to police action and court cases in 2014 and 2015. They do now each have a package of care including 3x a day regular carers for him, 4x a day for her, including a 1 hour visit. although for dad it took the last hospitalisation in November to do that. They are maintaining separate homes fairly successfully and easily with support. Mum has district nurses twice a week and 24 hour pain control. The GP has a good relationship with both of them and with me. They both have their own social workers and hers is excellent in my view, his is less experienced but we have been building a better relationship lately. I have LPA, health and finance, for mum although not dad. All the relevant professionals know, the Safeguarding issues have been discussed over and over again in multi-agency meetings, but up till now the missing piece in the puzzle has been dad's mental health. The Community Mental Health Team had signed him off, but now that has changed - we wait till February for the outcome of their assessment but the psychiatrist was clear with me that on the basis of cognitive tests 'he has a dementia'.

And that statement in itself has triggered panic in me, because whatever it brings to the situation, it will not make things any easier. It could be the worst of all, I know that. Mum's MCI could also deteriorate and in fact is doing I think although it seems slow and I'm not sure that getting her reassessed would help at all. She isn't falling at the moment, getting up in the night, calling me at all hours or making herself unsafe, it has been 18 months since her last UTI confusion. Attendance Allowance first! and let's get the court case done. I just hope to goodness the judge doesn't decide to send dad home on 18th January.

I don't think that me moving in with either of them would be any kind of an answer, the only people who have ever suggested that in fact are dad, who wanted me to move in and look after mum when he had his cancer surgery earlier this year, and the CPS in May 2014 who said they would be prepared to bail him to go home if I would move in with them until the trial - three months later! That was one of the worst moments of all, a real devil's bargain. At that point dad was as abusive to me as he was to mum and kept ordering me to leave the house whenever he was annoyed about something or nothing (which he did right up until his last arrest in August this year, since then he has not been back). So I said no to moving in with them, and dad, 81 years old at that time, spent three months in a bail hostel. It's all very well to say 'ditch the guilt', but I think it's tattooed onto my heart.

Believe me all of the advice and support I have received on here has been the best I have found anywhere, and a lot of what I have done has been based on your ideas. Sometimes the place it has taken us doesn't look that great, but that's until I think about the alternative.

Thank you

 

[Bod]

Well done for standing up for yourself!
It sounds as if you are on the right track, for the best outcome, for all.
At least your father dementia diagonise should get him the right attention he needs.
Stay strong, your handling this better than I could.

Bod

 

[canary]

I dont think that I could handle it either
What really impresses me is that, in all that chaos, you have imposed some sort of order. You said that your dads dementia is "the missing piece of the puzzle". Perhaps once the whole picture can be seen, your parents will get the help that they need.

 

[missmarple]

Gosh KMH with every post i realise how much you have done!
Would you consider running for Prime Minister?
It is a difficult situation with no simple solution, as you know only too well but you have imposed a large amount of order onto the chaos of domestic abuse and dementia .
One thing I've learnt in all the years of supporting a parent with dementia is that the degree of guilt felt often bears little relation to the amount one does.
Sometimes all you can do is be involved at all the difficult steps, do what you can do and accept a degree of uncertainty and messiness.
I also fantasised about "rescuing" Dad and brother, giving up my job, moving onto the house next to them and becoming their carer. 2 years of counselling helped me not to. I am glad I didn't because I know the price would have been too high for my kids, my marriage and my own mental health.