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Wandering started - very sheltered accommodation vs care home?

Bearz77

Registered User
Jan 18, 2020
46
0
My mum was diagnosed with Alzheimer’s in June last year, probably at the moderate stage (it took years for us to get a diagnosis). Now her vocabulary is very limited but she can do a few things around the house eg iron (!), wash up, dust and so on, if given instruction and watched. My dad is her carer at the age of 77 and with very limited mobility.
Until the last couple of weeks she has been extremely docile but out of nowhere she has become very emotional, disinterested and also very snappy. I live 2 hours away and have very young children so things are tricky in trying to manage Mum’s needs and Dad being worn out.
I called a dr out and they requested a urine sample in case of an infection. Of course this has been impossible for dad to do and this week she disappeared outside for 2 hours. A member of the public found her and took her to a dr’s where she was found to have a chest infection. She’s now completed 4 days of antibiotics so I thought the unusual behaviour might have started to ease - however a neighbour has found her wandering outside several times this week (she disappears when my dad’s back is turned and he can’t move quick enough).
From reading others’ stories I am anticipating that the wandering is here to stay. I have been trying to find very sheltered accommodation for both of them but I am now wondering whether it might be better for Mum to go into a care home. Dad is extremely resistant to this as he says it is duty to look after her; my argument is she isn’t safe if she can get out and wander about.
I know it would affect Dad terribly if they moved to very sheltered accommodation and then Mum is asked to leave which it sounds as if could be likely.
I have asked social services for a care needs assessment but that was two months ago. She would be self-funding any care, which I guess is why we’ve not heard from anyone.
if anyone can shed any light from their experience whether care home/sheltered accommodation might be better at this stage it would be good to hear. Thank you.
Sorry for lengthy post!
 

Violet Jane

Registered User
Aug 23, 2021
239
0
I rather suspect that sheltered accommodation won't be suitable for your mother. Will the warden go chasing after your mother if s/he is alerted that your mother has wandered off? I'd be surprised if that 'service' is offered. I think that you need to have a very frank discussion with the manager and the warden. There's no point hiding the facts, moving your parents and then finding that you have just relocated the problem to a new setting. In fact, a move might make your mother's wandering worse.
 

MartinWL

Registered User
Jun 12, 2020
1,125
0
Unfortunately wandering is one of the behaviours that puts the person at greatest risk of accidents, getting lost, etc. With winter coming being lost in bad weather would be bad news. The issue is whether sheltered accommodation could offer a way of preventing wandering. In a care home there can be a denial of liberty safeguard order, not in a sheltered flat. In a sheltered flat nobody can detain her against her will. So you may need to look at care homes.

Given your dad's health issues, might it be an idea to move both into a care home in a double room? Some homes do have that offer. Now that, thankfully, care homes allow residents to leave, your father might be able to live there but still go out in the daytime. Just a thought.
 

Bearz77

Registered User
Jan 18, 2020
46
0
Thank you both. You confirmed my suspicions. My dad would be adamant that he is not going in a care home (even though I think it would be safer for him too). However, if there is a chance he could go out that might help persuade him. I’ll do some investigation to see what is available there. Thank you.
 

Sarasa

Volunteer Host
Apr 13, 2018
3,685
0
Hi @Bearz77 i too think extra care sheltered accommodation won’t be enough if your mum is wandering. We looked into it for my mum but it soon became obvious that she needed more support than such places provide. Mum didn’t get lost when went out as such but she did go drinking with random strangers in the local pub which was very risky behaviour.
Mum has just moved care homes, but her previous care home had several couples there. The home also had quite a few residents who went out as they pleased as they didn’t have dementia, but like your dad, just needed a bit of looking after. So there are homes out there that could meet both their needs. You might find this website useful for your search. https://www.carehome.co.uk/
 

Bod

Registered User
Aug 30, 2013
1,423
0
Care Home, for both, whether they like it or not.
It's going to happen, for her safety, his care needs.
Better to go to a "nice" place in an organised manner, than an available bed in a crisis.

Bod
 

MartinWL

Registered User
Jun 12, 2020
1,125
0
Care Home, for both, whether they like it or not.
It's going to happen, for her safety, his care needs.
Better to go to a "nice" place in an organised manner, than an available bed in a crisis.

Bod
That's rather authoritarian. There is no suggestion that the father has lost mental capacity or indeed has any impairment of the mind at all. Assuming that to be the case he has a free choice in the matter.
 

Feeling unsupported

Registered User
Jul 9, 2021
32
0
My situation was a little different, in that mum was already widowed. I moved her to what was meant to be dementia focussed sheltered, in something of a panic at the beginning of lockdown. This worked reasonably for much of the time, but as her needs have increased I have had to move her again into a care home in recent weeks. Even with the support that was previously offered, she only had to be alone in her flat for a matter of minutes sometimes, for something worrying to happen. The establishment was meant to be secure, but she did manage to 'escape' perhaps by following a more independent resident out and had to be rescued from the traffic roundabout opposite. I also found that the almost daily demands on me to call doctors, sort out missing prescriptions, rush over because she'd fallen...the list is endless, began to take over my own life. I too was not close by and still working, so it became incredibly time consuming and stressful. The recent move to care home has meant that they just deal with all these things and I can return to just being her daughter. With hindsight, the care home might have been best from the outset, although at that stage I very much doubt mum would have been in agreement, we are now at a point where she has little choice but to do what we decide is best.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,363
0
Kent
We know dementia is a progressive illness and a time will come when 24/7 care will be necessary, whether from family or in residential care.

We also know how disorientated most people with dementia can be with a change in environment and routine.

Unless a person with dementia will have someone with them 24/7 for the long term, I do not understand why assisted living is ever a practical option. The time will come when another move is most likely to become necessary and cause more confusion and upset.

I know my widowed mother went into residential care too soon in comparison to the time my husband went into residential care but it was the right move.

We really do have to treat each person with dementia as an individual in their best interests. As carers with responsibility, we also are best advised to think long term.

Both my mother and my husband were wanderers but they were in very different provision.
 

marionq

Registered User
Apr 24, 2013
6,413
0
Scotland
Wandering was the worst part of my husbands dementia. Somehow I managed to keep him at home for seven years until he died after a broken hip but the stress is huge. He could not have coped on his own or with anything other than 24 hour care. His sister lived in sheltered housing which had been excellent up until the start of the pandemic when other support services broke down and she then went to pieces in a matter of weeks. Social services moved swiftly, amazingly, and she was placed in a really lovely care home. She was very happy there until she died last month.

Sometimes you just have to accept that 24 hour care is the only thing that works.
 

jugglingmum

Registered User
Jan 5, 2014
6,051
0
Chester
My mum has been in sheltered extra care for 7 years and it has worked out well for her. There are other residents with dementia and for the right person it can be a good fit.

I only anticipated 2 years before she would need a care home but it still is working out for her.

With dementia you never know how the disease will progress but the anxiety my mum had disappeared when she moved in.

However the buildings are flats and not designed to cope with wanderers or aggressive behaviour. I think once wandering begins it tends to continue and escalate so as others have said this isn't really an option. It was made clear to me mum would be asked to leave if she exhibited these behaviours.

If you don't move her now with colder weather coming she could end up in hospital and a crisis move.
 

Bod

Registered User
Aug 30, 2013
1,423
0
That's rather authoritarian. There is no suggestion that the father has lost mental capacity or indeed has any impairment of the mind at all. Assuming that to be the case he has a free choice in the matter.
Yes it does come over as a bit rough, but strip away all the niceties of the situation, what are you left with?
You don't need to loose mental capacity to be in need of Care.

Bod
 

MartinWL

Registered User
Jun 12, 2020
1,125
0
Yes it does come over as a bit rough, but strip away all the niceties of the situation, what are you left with?
You don't need to loose mental capacity to be in need of Care.

Bod
You don't, but you do need to lose mental capacity to be told what to do by others..
 

Sirena

Registered User
Feb 27, 2018
2,326
0
You say your mother's behaviour has not improved despite the antibiotics. People with dementia can be very resistant to taking medication so it is worth checking your dad is sure she's taken them as prescribed. It would also be worth checking if she needs different antibiotics.

But other than that, I agree with the other posters that sheltered accommodation is unlikely to be suitable anyway. At some point her behaviour will almost certainly deteriorate to a point where it's unacceptable in that type of accommodation. All you can do is try to persuade your dad that a care home would be the best option for her.
 

Bearz77

Registered User
Jan 18, 2020
46
0
Thanks to everyone who replied with very helpful comments. Dad has 100% capacity but has always been resistant to care homes (his mum who had dementia was in a care home which did not treat her very well), so it's a difficult road to convince him that this would be the better option for Mum. I will focus on the safety aspect in my attempts to persuade him. My brother is also resistant but in the last couple of weeks or so seems to have become less resistant, taking into consideration recent events.

Thanks again.
 

Bearz77

Registered User
Jan 18, 2020
46
0
You say your mother's behaviour has not improved despite the antibiotics. People with dementia can be very resistant to taking medication so it is worth checking your dad is sure she's taken them as prescribed. It would also be worth checking if she needs different antibiotics.

But other than that, I agree with the other posters that sheltered accommodation is unlikely to be suitable anyway. At some point her behaviour will almost certainly deteriorate to a point where it's unacceptable in that type of accommodation. All you can do is try to persuade your dad that a care home would be the best option for her.
Thanks, @Sirena - it seems she is chewing the tablets which may be part of the problem (also found out she'd missed a couple as Dad couldn't get her to take them - another reason why a care home would be better). I'll keep an eye on this.
 

Violet Jane

Registered User
Aug 23, 2021
239
0
The symptoms of Delirium - if that is what your mother has - can take a while to disappear, and sometimes they do not go and the person has to go onto antipsychotics. This can happen whether or not the person was showing symptoms of dementia prior to developing the infection.

Another factor is that infections in elderly people seem to be difficult to eradicate completely and so the person is left with some residual infection.

Unfortunately, Delirium can leave a permanent legacy for a PWD in that s/he never really returns to his/her baseline after the infection which has triggered the Delirium has been treated. I assume that the already fragile brain is damaged further and that damage cannot be repaired.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,021
0
High Peak
If someone is wandering there are only a few ways to stop them. You've said your father has very limited mobility and isn't quick enough to stop her leaving, nor can he follow/accompany her. There is also the issue that wandering can become a very strong compulsion so physically stopping someone can lead to anger and conflict.

The only other way to stop someone wandering is a locked door. This brings up a lot of other issues! First, if the person is in a house or even sheltered housing, there is the safety issue - how would they get out quickly in an emergency? Then there's the whole question about deprivation of liberty. In sheltered housing, they couldn't actually stop your mother going out if she insisted - you can't keep someone against their will unless there is a DoLS (Deprivation of Liberty Safeguarding order) in force and the housing complex would not have one of those. Care homes have to have a DoLS in place for all residents if they have locked doors and much will depend on whether a social worker considers your mum has lost capacity.

So, unless there is someone with her at all times to physically stop her wandering, your only real choice is a care home. Sadly, your mum will only get worse and it's an awful lot for your father to cope with. It would give him peace of mind to know she was safe and cared for 24/7 but you're going to have to convince him of that! Good luck...