Stalking by mother with dementia

For issues specific to caring for someone with dementia.
Hi folks, Any advice would be much appreciated.

A year after the death of my father one of my siblings stepped in to rehouse my 83-year-old mother in a cottage within the grounds of her garden. The relative lives in a bungalow and my mother, who has early vascular dementia, is constantly peering through windows at all hours of the day and night, occasionally rapping on them too. She patrols the garden at night with a torch as well as throughout the day. All privacy had gone as they can't even retreat upstairs so net curtains are now installed over most windows and some gates to stop Mum accessing the windows of guest bedrooms. Mum has always been fairly hostile and there have now been physical attacks on myself and my sibling if we disgree with her in any way or ask her do stop antisocial behaviour. She will visit the house to actively provoke arguments. The presence of the curtains and gates are now the chief cause of most of the rows. Mum is also seeking to isolate my sibling from her partner by making up tales of physical attacks and verbal abuse against her. I am not sure my sibling or her partner are coping although they remain stoical when discussing it. They are worried about the cost of moving mum into care as she would be a self funder as my Dad sold their property a year before he died, intending to use the capital for renting.

Mum has been seen by a psychiatrist who has diagnosed a mental health disorder as well as anorexia. He and Mum's doctor are aware of the attacks and aggression but don't seem worried if the violence is only domestic. Mum's short term memory is bad but she never fails to remember any perceived slights.

I have told my sibling that Mum should be moved far enough away from them to deter the stalking behaviour and she would probably deal with independent living better if she lived somewhere where there are more people and street lighting so sheltered housing at the very least. My sibling and I have an activated POA for finances and another unactivated one for welfare.

I would welcome anyone else's take on this.
Hmm, the granny annexe option really only works when you don't have behaviour like your mum's! But of course there was no reason to think she would get this bad.

If she does have dementia, if your sibling can 'tough it out' at some point the disease will cause such confusion etc that she will lose mobility (it's taken three years of residential care for dementia for my now 93 y/o MIL to reach immobility). That would 'solve the problem' in that respect -though of course your mum would need more care in the annexe because she would be entirely helpless then.

Also, as dementia progresses the behaviours it produces can change as well - they can become more, or less, aggressive etc etc, so that might happen (no guarentees). (It's a very 'individual' disease in many ways - at least if its vascular rather than Alzheimers which I believe has a more 'common progression pattern'???)

My MIL was, until she had to go last year into a secure unit, continually trying to 'escape' (Very sad, she just wanted to go home, and find me, sigh). She was put on a low dose of Diazapam to reduce her agitation, and it did help. Wondering if that might apply to your mum? (It can make them wobbly as it's a muscle relaxant as well as a 'mind relaxant', so the dose can't be too high).

Looking at it from the non-dementia POV, if she does have an 'independent' mental condition, and it is THAT that causes her to be aggressive and potentially violent, that MIGHT give rise, if the violence exacerbates, to potential sectioning?

I believe, though please check with Carers UK or other members here who know more, that IF she is sectioned, then all care will be covered by the NHS (it's a 'disease')(which dementia is not classed as!). However, of course the NHS will be highly reluctant to have her sectioned, as it will cost them money, and Mental Health is seriously underfunded already, and spaces in psych units very scarce.

I would agree that if she were moved into alternative supported accommodation her anti-social behaviour might lessen anyway, and would be more 'inhibited' by other residents/the manager etc, but you may find it doesn't last long - dementia is progressive, and how long would it be before she could not live even semi-independent in supported accommodation?

Also, that would cost money - usually you have to buy the flat, not rent it (Abbeyfields DO rent, but may not cope with severe mental impairment, let alone psychiatric residents!, and if they do, they will cost a lot anyway).

In the end, the decision is going to have to be, if your mum is NOT sectionable, then either family go on coping with her, on the basis that they will inherit her money/property, or they bit the bullet, give up any hopes of inheritance, and spend her money on residential care (allow at least £100 a DAY - that's what my MIL is paying, and that is relatively inexpensive - I've seen dementia care homes for £1100 a week, not a mere £700!).

Both options are grim, and really, once dementia sets in and becomes 'unmanageable' for relatives (ie, it's not just a case of popping in and out to keep an eye on mum, etc, but real hands-on, can't-be-left-alone, everything-has-to-be-done for them), then really it comes down to what is more important? Inheriting her money, or giving up your own life (24x7 care is what my MIL now needs.....)
Hi Jenny,
Thanks for the reply. Personally I think I would be happier that the 'inheritance' went on Mum's care as the alternative is such huge disruption to the family. I did warn that Mum's behaviour might be unacceptable as it is now proving. After a lifetime of being bullied and browbeaten by her I wasn't willing to take on her care. As it is, I am so terrified of Mum that I daren't visit her on my own and my sibling is beginning to feel the same so evening visits are done by her partner.

Mum refuses to take anti depressents as she would rather drink lots of alcohol (which doesn't help). A big cause of her dementia would appear to have been prescription drug abuse as she was formerly a medic with prescribing ability.

My sibling isn't worried about losing the inheritance, but being asked to pay substantial top up fees. Reading this forum, am I correct in thinking that the wider family would not be required by law to pay these once Mum's assets are gone?
Welcome to the forum. When was it said that mum had "early" dementia? It sounds far worse than that! So I would suggest that she needs to have a review. The effect of alcohol on someone with dementia crops up regularly here. You are not alone.
Does she accept that she has any problem at all?
I would also suggest that your sister keeps a diary for a week, maybe also records what mum says. Others here don't like this sort of suggestion. I do, because it provides absolute proof of what is going on. The situation is going to get worse and worse until your sister does something, supported by you of course. Better to act sooner, for the sake of all concerned, but especially your sister's relationship.
IF mum was considered to be a danger to herself or others then she might be sectioned, and I understand that MIGHT mean that for ever after if she needs residential care it will be funded by the NHS.
However, what I can say for sure is that any care mum needs should be funded by mum, if she has over £23,000 roughly. If she has less than that amount, the local authority will pay part, or all, of the cost. You and your sister are NOT liable for the care mum needs. so rest assured on that point.
Come back to the forum whenever you need, for support, or advice. If you read some of the other threads you will see that others have parents who have been horrible to them too from a very early age. So sad.
Thanks Bowlingbun.

No, she doesn't accept she has a problem with alcohol so getting her to stop is impossible. She was hospitalised earlier this year and didn't have any alcohol for about a month but soon lapsed back on it when she became mobile enough to buy it herself.

I have asked that all incidents of aggression are logged and there is a miniature recording device available.

I think there was an early hope in the family that as the dementia progressed she would forget her previous nature - unfortunately it does appear to be making it worse with the added problem of no 'off switch'.

Thanks again for your advice.
Sarah, one of the really really really important decisions to make about our parents, in any circumstances, is this.

We have to decide, almost from the off, WHAT we are going to do in a variety of circumstances.

As I mentioned above - the choice is grim:

Either we risk having to put our own lives TOTALLY on hold 'for the duration' of the parent(s) needing care (and that can be over a decade, easily, or more if both parents need care, and one survives the other by years and years!), or we have to 'throw in the towel' about our potential inheritance, right from the start.

The two known unknowns with elder care are: How bad will they get (ie, how much care will they need) and how long will they live.

We can't tell either of them!

Moreover, a parent who seems to be doing very well can, suddenly, deteriorate markedly, both physically and mentally - my MIL reached the age of 89 as a totally independent woman - then declined abruptly with dementia, and is still physically pretty strong four years later. She could make a 100 no problem!

The reason I say all this, which you know, is to warn you that the WORST option is the following one:

You decide to take on mum's care yourself, to safeguard the inheritance, but things get SO bad, and last SO long, that, in the end, she STILL has to go into care and then STILL uses up all her money for her remaining years!!!!

That's the worst of both worlds! You've ended up having the ordeal of caring yourself, only to lose the inheritance anyway!

So, I would say to your sister - decide NOW what you are going to do, because if you think there is any chance your mum has to go into self-funded care (and judging by her behaviour I'd say the odds were high)(ie, if she avoids sectioning), then you might as well do that right now, and kiss goodbye to the inheritance anyway.
Sarah, you say mum was hospitalised earlier this year for a month. Can I ask why? Has her general mental state deteriorated significantly since then?
Sarah, top up fees only come into play after your mum runs down her OWN money/assets to the £23k mark where the local authority steps in IF the LA wants her to be in a 'cheaper' home than the one she might currently be in!

When your mum runs out of money, the council HAVE to fund her residential care, BUT they can do so in a cheaper (nastier?) home (further away??)(not sure if they have to be within the county?).

So, if your mum, say, is settled well at a home where she self-funds, and then hits the LA-trigger mark, and the LA won't pay the fees at that level, they can, so I believe, insist she moves to a cheaper home. The only way she can then stay at the original home is if 'someone else' (ie, you/your sister) pays the difference - ie, the 'top up'.

To be honest, from the way you describe your mum and how horrible she's been to you both all your lives, she can now tough it at a 'cheap nasty home' without a qualm on your part!
Remember, too, that the finances of care homes are on the following lines.

They do 'deals' with the Local Authority, and set a room rate of, say £70 a day for LA-funded residents. The LA refuses to pay any more, and argues they are 'bulk buying' places, so deserve a discount.

If £70 a day is actually BELOW the real costs of the care home (let's say the 'real' cost of a place is £90 a day), then the home basically makes up the difference by OVERcharging self-funding residents (eg, they pay £110 a day).

Self-funders very often end up subsidising council-funded residents (ie, subsidising the council).

The only way self-funders ever 'get their money back' ie, get their 'overpayment' back is if THEY live long enough to use up all their own money, and have to go on the council funded status themselves!!!
Sarah, from everything you've said, unless your mum can be permanently sectioned, I would bite the bullet and put her into a residential home that can cope with her aggressive behaviour (which might subside once there anyway) and be done with it.

She does not, from the sound of it, deserve any consideration from her children, and your lives are now far more important than hers, which she's done so much to self-destruct anyway (horrific she was a medic herself).

The only 'practical problem' is actually 'evicting' her, which might prove tricky. (What if she refuses, has to be carried out forcibly, can you do that, ie, legally, etc etc)

The easiest way forward would be to get her hospitalised, either for something physical, or, altnertiveliy, psychiatric, even if that is temporary, because then, once she is physically OUT of the annexe, your sister can tell the hospital she refuses to have her back, and then you find (in fact, start looking now) a care home that will take her as a self-funder, and she moves there straight from hospital.

Do always always always remember that you have NO legal duty of care for her! None! You can 'walk away' and never set eyes on her again if you want. Having PoA doesn't change that - you just pay the care home fees out of it.

What your mother wants, or doesn't want, right now, doesn't matter. Once she is OUT of the annexe, she can't come back in. She will be 'in hospital' until they ship her elsewhere. She has to 'consent' to a care home, however much she objects, as she will be discharged from hospital at some point, and have 'no where else to go'. REFUSE to allow any taxi or ambulance returning her to the annexe any access to it (change the locks even, and bar entrance to your sister' property).

The care home is the only option.

And, how knows, maybe your mum WILL finally 'settle down' as the dementia progresses, and become more 'peaceable'. It happened to my MIL (no that she was horrible, just endlessly trying to escape, poor soul), so it may happen to yours.

Let's hope so! But even if not, a care home will deal with her aggression and so on, and you and your sister can get on with your lives. Visit her if it brings anyone happiness, including her, otherwise not.....sad, but there it is. Had she treated you better you might care more about her now....