Alzheimer’s - wandering

[ChipsnGraveee]

DM has Alzheimer’s and after a serious wandering episode 2 miles from home and involving the police, DF now never leaves her alone. Done Herbert protocol etc etc.

The problem now is every 5-10 mins all day long she’s going outside and wandering into neighbours gardens/ the street, knocking on people’s doors at unsociable times, she even went next door this week with her breasts out 😫. She doesn’t go far, but it’s so stressful for DF and the neighbour is starting to lose patience..

The only thing he can do really is lock her in the house (with him also inside) but it seems cruel and I know you’re not really supposed to (deprivation of liberty etc).

The only thing I can think of is some sort of stairgate so she can still look out / get fresh air (it’s a back to back terrace with no enclosed garden) but not leave the house.

Any advice/experiences would be welcome! Thanks

In my experience once wandering starts you can't keep your person with dementia safe at home without going Fort Knox and securing the property.

What's dad's thoughts on finding mum a secure nursing home where she can be kept safe? His health matters, too.

It's so very hard.

He can absolutely lock the door to stop her wandering outside which would be more risky if she did. It is proportionate given the risk. With a stairgate there could be a risk she might try to climb over it and seriously hurt herself. As an experienced social worker I would advise that he gets support from adult social care and have a carers assessment to look at the options. It is alot for your dad to manage by himself. He sounds like he is doing amazing.

Thank you @Forgettable @Louisetopaz21

After the police incident a couple of months ago they were referred to social services for an assessment but there’s a long waiting list.

They don’t have the funds to pay for a care home so my understanding is that carers would have to be in 4 times a day before she is considered for state funded care??

They don’t have any carers at the moment.
She wears incontinence pants but DF deals with it all himself and works full time from home so is there to cook etc. or I work from their house if he needs to go out. He’s stubborn and I think it would be a big step for him to get someone in.

We’ve now got the attendance allowance in place but until he gets the assessment he doesn’t really know the best way to use it. No point someone popping in for half an hour as mum will be out of the door behind them the minute they leave!

Contact social care and ask them to repriortise due to high risk of carer breakdown and the risks to your mum. Must be so difficult and sad to see her like this.

Four visits a day relates to care needs, if wandering ASC will find care due to high level of risk of absconding.

You need to contact their adult social care team urgently and state that mum is now high risk. Don't be surprised if you see or hear the phrase 'walking purposefully' to describe the wandering, its just the way social care term it.
We had this with mum but dad is physically disabled and very deaf so he didn't know she was leaving the house. It took phone calls to adult services from others in their local area for adult social care to take it seriously, report each occasion to them as a safeguarding issue. Your dad is going to need to get his head around at the very least having someone coming in to help him, but I'd say that your mum is past that point. Social services don't have to try 4 care visits first, my mum was only on 2, but she took to walking into the local high school which was causing other people problems.
Locking themselves in really isn't a longterm solution either as it isolates your dad

you can get bracelets which can't be removed (without a key) which have a tracker in them - I appreciate that doesn't solve the core problem but it might be a bit of peace of mind that you can find her if she does wander?

I would also say try to persuade your dad to accept 1 visit a day to get you 'into the system' - what they would do possibly depends on where you are, but would he accept a lunchtime visit which would mean he could have more work flexibility, for example? Or so he could go out for a walk. He needs to look after himself to be able to look after her, so perhaps that argument would help?

Twice, we have thought we could cope and left things too late to ask for help, and then when we needed it we were too far down the list to get anything. if you are on the radar already if you need help you stand more chance of getting it. This time we are in the system and making sure we have regular contact with people even if it feels unnecessary right now!

Walking with purpose I cringe at as how do we know that they are walking with purpose it is a massive assumption. She is leaving the house without the support she needs which leaves her at risk of stranger danger, death and getting lost should do it.

I hate that phrase too, but often see families struggle to understand its use. I worked as a care home administrator for over 15 years and we were always being told what was acceptable to use, but the wording rarely described the issues properly

Thank you all so much, it really does help to talk about it.

Dad (or I) will have to make a call to social services on Monday to see if they can be bumped up the list. Getting into the system with one visit a day sounds a very good start.

Part of the problem has been that dad is just overwhelmed, working too hard (but it’s his escape) and takes forever to do anything. It’s taken me 2 years to get him to apply for the attendance allowance. He still doesn’t have POA and is probably too late now. He just sticks his head in the sand and I’m trying my best to help but have 2 children and can only do so much.

Tbh she’s gone downhill so rapidly in the last 6 months (only diagnosed 2 years) it’s taken us all by surprise I think 🫩 Thank you all.

Your dad will need to make the call as it's possible adult services won't speak to you, particularly if your dad is able to manage these sort of calls, we were allowed to speak to adult services after my mum and dad gave their permission (ironically dad was very ill before mum's altzeimers progressed so she saw it as us helping her with dad)
Power of attorney depends on whether your mum would still be deemed to have capacity for making different decisions. Its assessed by each decision, not a blanket 'no capacity' Does she still know what money is for example? Again, my mum was asked by a social worker what she would do with her debit card and mum had no idea.
We ended up having to apply for deputyship instead which takes around 9 months and costs more, it really depends on how 'joint' your parents finances are as to whether it would be needed. My mum kept her money completey seperate and always refused to do POA so deputyship was the only way to access her account.
Deputyship is very rarely applied for or given for health and welfare.

I had exactly this situation with my parents.

My mum has Alzheimer’s, my Dad and I were her carers. Mum started wandering, the second time she was found in a childrens play park near my sister’s house by one of my sister’s neighbours. We had to start locking the door and taking out the keys - it was a safeguarding risk if we didn’t. One of us was always with her, inside or outside the house.

I arranged a care assessment for mum and carer’s assessment for Dad, but they weren’t very helpful. My parents savings were above the threshold, so we were told the equivalent of “get on with it and research yourself”. I arranged a dementia day centre for mum 2 days a week, which really helped Mum stay stimulated and give Dad a break.

Mum is now in residential care - her night time wandering was becoming much worse and Dad and I were trying to cope on 3-4 hours a night. He was at breaking point, so we made the decision for his sake, as well as realising Mum needed more care than we could provide. It was the right decision.

ASC were determined that Mum could stay at home, but since we were self funding to start with, there wasn’t anything they could do. They’ve now agreed that as her night time needs are so high, they’ll take over some of the funding when my parents savings drop below the limit.