Mum with Alzheimer's and started wandering

[pastaparadise]

Dm lives alone and has dementia. She has carers x3 per day, and i call round several times per week. She's usually quite safe and settled but yesterday a neighbour phoned to say they'd found her waiting at the bus stop. Luckily they stopped and took her home. She didnt really remember the details when i went round later. Then today one of her carers noticed her walking towards the nearest village. Probably half a mile away down an icy road. She was picked up and taken home. She's muddled about where she is, unsure if she's at home etc.

I'm unsure what to do now. GP said they couldnt do a urine test til Monday to see if she has a UTI. Sadly i just think she's started to deteriorate quickly over lockdown through lack of stimulation.

Assuming it's not an infection, is this just the stage when we have to consider a care home, or has anyone had experience where wandering has been an isolated couple of incidents but then not recurred for quite a while? Frightened she'll just go off and no one will be able to find her. She can say her address but i suspect would get quite disorientated if out for long. Also wanting to put off a care home for a while longer if possible. Any advice much appreciated- just feel a bit overwhelmed with this turn. My sibling lives 4 hours drive away and can't visit at the mo, and I'm trying to wfh with young dc and help her.

My mil went through that phase. Usually the neighbours stopped her and rang us (bloody stars!) but one time she managed to flag a car down and get a lift to her old address ten miles away. Luckily she was confused when she got there and the driver found her diary and rang us (we had our numbers written everywhere we could think of in her handbag). We had to make that decision to look for a care home at that point. She had caters at home for two hours a day, but we couldn’t afford constant care. She just wasn’t safe on her own. Convincing her to go was a tough one too. But once she was in the home and settled things were quite nice for a few years. All the time we spent with her was “quality time”. We went out to cafes, little trips etc. Nowadays she doesn’t know us or want to go out. She feels safe and happy where she is. I treasure those early days in the home. The relief of not having to worry whether she was safe was so good. We were lucky, we found a really great home.

Hello,

I experienced similar with my Dad who had vascular dementia and I’m afraid he did eventually need to go into a home. I also know how tough it is dealing with stuff like this when you have your own young family to care for too. UTIs can cause issues so it may be that but worth being prepared for the fact that this might be a behaviour change that will need to be managed safely. I have to say that I found the wondering stage the most stressful of my Dad’s dementia. We even had a police man hunt for him at one stage.

Things that helped - documenting e very thing, getting a social worker for him, referencing the CQC when needed and fighting for every bit of support for him that we could with advice from Alzheimer’s society and Carers UK. I understand wanting to put off the home thing but in the end it ended up being a huge relief when he did finally go into one because we knew he was safe and cared for.

Good luck with everything and remember to look after yourself too x

If she's getting out and wandering, she's not safe.

In the immediate, get her a dementia bracelet that has the care company number and your number on (not her name etc) so she can be easily identified if she does get lost.

Assuming that the carers spend 30 mins a day with her each visit (and that's being optimistic), she's alone for 22 1/2 hours a day. That's just not safe and it's time to take the next step. I'd try your GP or social services adult helpdesk.

Op there is a lot of tech available for supporting safety at home. Cameras, alarms, door sensors all connected to your phone, medication alerts, bath sensors, fall sensors, bed sensors all designed to support someone to be safe at home. But yes, wandering is a slippery slope to no longer safe at home, but care homes are hard to get into at present and high risk places (and you can’t visit!), so consider other ways to keep her safe. Even gps alerts in shoes, handbags etc. Good luck

Oh I’m so sorry I went through the exact same thing with my dad.

Once he started doing that he then did do it periodically and there was no wag to stop
It and it became just to unsafe to support him any longer in his home and he had to go into a home ultimately. We had carers 3 times a day plus a cleaner plus visits whenever we could but when the mood took him he was off. It is especially bad in winter as it’s difficult for them to know what time of day it is.
I did get a thing on his door with my
Voice telling him to go back inside which the carers would turn on last thing at night but it didn’t really work either.
I’m sorry - it’s so hard

Thanks all. It's heartbreaking isnt it. Wanting to put off a home for many reasons: covid restrictions, i think she'd miss home dreadfully, cost, & i wont be able to visit as easily - she lives across the road from dc school so in normal times i can easily nip in and see her, and they like visiting for cake and tv etc.

I have not great memories of nursing homes as sadly df was in one for 7 years with dementia also, and i know dc wouldn't like visiting making it harder for me to go. I know it's inevitable eventually, but was hoping she'd be ok a while longer.

I'll look into some of the suggestions above. The other problem is she's fairly deaf, but keeps taking her hearing aids out, so doesn't hear the phone when i call to check. Not easy times!

What is your mum's financial situation ? Does she have savings to be able to chose her care or would she be relying on what would be social care funded ? If she is self funding then there is an option of a live in carer rather than moving into residential care .

so doesn't hear the phone when i call to check. Remote controlled camera that you can access from your phone? Movement detectors so you know whether she's up and about and moving from room to room?

We have installed cameras in the living areas of my partner's parents house. We can check in in them when we want. We also have a doorbell camera so we can see who is calling at the door. It's been very useful though they are mentally quite good at the moment.

How unsafe is it when she does wander. My dad had a whole phase of going into town, getting lost or forgetting why he'd gone (the haircuts that never happened etc) but with a bit of help managed to get back home again. Then, as he deteriorated, he just stopped going.

It obviously all hinges on how safe/unsafe she is but having dementia doesnt mean an instant deprivation of liberty.