Should we listen to care home?

[Plum1108]

We moved my mum into the resdential side of a care home last September. She seemed to settle in really well and has made new friends. Within a couple of weeks she was able to find her bedroom (it's on the first floor off the main corridor) so we were really impressed.
Staff have reported that she has tried to go out a few times but she came from her own home where she could come and go although she rarely went further than her front drive. They have not reported this happening for a few weeks but yesterday we got a call to say that mum was in the garden and went out the gate (which is normally locked but left open by workmen). She was found in the local high street by the police and returned to the home.
The home has now asked for a meeting and have said that due to her declining health, they want to move her to the dementia unit. We are very reluctant for her to be moved as, physically she is very fit and able and she enjoys the company of others. I'm worried that in the dementia unit the only people she have to interact with are the staff and that she will deteriorate very quickly. There is also a cost implication for her moving as the demenita unit and she is entirely self funding.
Are we worrying needlessly?
Do we have any say about moving her or is the only choice to find another home?

Thank you for your advice in advance
Plum x

 

[Canadian Joanne]

I don't know what the legalities are but I would definitely push to keep your mother where she is.

I'm wondering if the home is more worried about the fact that your mother got out because the gate was left unlocked and that is what they are trying to remedy. If so, it might be worth it to gently point out that moving your mother to a dementia unit because of this reason is over-reacting a bit. It's also putting the onus on your mother when it should be on the management, in my opinion.

I would look at the nursing home's contract or documentation and see what is said about moving someone. I know I would probably say that they could move my mother but I would not pay any increases due to the move. Nicely, of course, but it could be a last resort sort of thing.

I did move my mother because the home wanted me to in 2006 because of her aggressive and violent behaviour. There was no difference in cost but it was actually detrimental to my mother, as she was very sensitive to sounds and in a dementia unit more people would be acting out. In hindsight it was the wrong decision but it was made with the best of intentions.

Then only a couple of years ago I was asked if I would move Mum because her new roommate objected to the noises my mother makes. I said no, simply because of the experiences we had had in 2006. The nursing director admitted he asked me because he felt so comfortable with me.

So I feel rather strongly about moving a loved one and will only agree after a lot of thought and deliberation.

 

[Katrine]

Has your mum has been re-assessed as requiring 24/7 supervision? I would be asking to see where they propose to move her to and why? If it is so she has better supervision, this could be a good thing, both for her safety and to keep her occupied. The extra cost pays for increased staffing levels.

In residential units the residents often like to be left alone or to watch TV whereas residents with dementia can be fit and active and are bored with sitting around watching other people sleep. Have you had an opportunity to visit the dementia unit? These vary so much that it is worth checking it out. They are not all scary. It depends on how they manage the varying levels of need. You would not immediately realise that my MIL is on a EMI rather than a residential unit.

 

[CeliaThePoet]

In my mother's assisted living facility (in the US) they deal with this by having her wear a non-removable ankle tag which sets off the alarm when she gets near the front door.

 

[Raggedrobin]

i don't think making the great escape alone is a good enough reason to move her, it depends if they have other concerns. I do know what you mean, though, it seems wrong to have to move her if she isn't ready for a dementia unit yet. Can you involve a third party, like a social worker, to assess her? it doesn't matter that she is self funding. re the cost, I don't think you should take that into account if at all possible. I am sure there are plenty of us on here waving goodbye to our inheritances, but ultimately it is her money and the priority should be to spend it on the best care for her. Presumably if you run out you end up with the LA coming in and then having to do a top up?

It may be that the dementia unit isn't right yet, but one of the homes I went round said there is a shortage of sort of inbetween homes, something in between normal residential and all dementia. I opted for a non dementia nursing home, they were willing to take her but there is good 24 hour care, which means they seem, fingers crossed, to be coping with mum's attempts to leave. So what I am saying is maybe there is another non dementia home that would be more flexible about keeping your mum despite dementia? Depends on whether moving from the whole complex would upset her.

 

[tallpaul]

Just a little bit about our recent experience. Mum went into a care home, not dementia specialist, not a locked unit. We totally underestimated her wandering once she was out if her home environment and the home totally underestimated how confused she is when they assessed her as suitable. One week into her stay she got out of the front door and fell taking the full brunt of the fall on her face. She has been in hospital now for 10 days and the horrendous bruises have faded, her mental state I think has returned to what it was before the fall ( almost total confusion, some paranoia and delusions) and the hospital are talking of discharge once physios can get her mobility back up a little. We know she needs a secure unit and are looking at a dementia specialist unit. The environment is not the one we want for her but it is the one which will keep her safe. I know how difficult it is.


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[NewKid]

Mum went into a care home, not dementia specialist, not a locked unit. We totally underestimated her wandering once she was out if her home environment and the home totally underestimated how confused she is when they assessed her as suitable.

I too, some years ago, was in a similar position and safety became a main issue - only a secure locked environment would work for my Mum who was desperate to get out. Additionally the staff in the non EMI residential home were lovely, but not quite patient enough or time-equipped to deal with the particular challenges of dementia - even in the early stages, which now seem to me the hardest in many ways given the 'spirited' response of my mum at the time! The other residents were often intolerant too of Mum's quirks.

I'd suggest looking around at several places and getting a feel for an EMI place that seems to feel right for you and your mum - perhaps your mum is not yet quite ready, but sad though it is, she probably will become so.. at least you'll have done some groundwork? These homes vary so much and I'd agree some really do not do enough to stimulate those in early and mid stages, which is a great flaw in the care system and makes me really angry! We have to all keep up the fight / pressure.

Saying all this, my Mum has just been asked to leave her residential (dementia registered) care home after four years as she now has 'high dependency needs' - rather than staff-up, they are chucking out! Only weeks ago I was having reassuring 'end of life' strategy conversations with them. This is about her needing help with washing and walking .. not a physical ailment that involves specialist intervention… and now placing her with other homes that don't have any loyalty and history with mum is really challenging..

This has made me think that homes with different units for changing needs (as long as you like their ethos) are probably ideal.. Anyway, good luck!

 

[annie h]

I was advised to look for an EMI home for my Mum. I found the one I liked most (or disliked least - they do tend to be quite disturbing places if there are any residents with a tendency to be agitated). However, they had a residential unit next door and recommended trying her in there. I was so glad I did - she was much better off in the residential unit than she would have been in the dementia unit which I am sure she would have found distressing. They were actually very good at dealing with the dementia issues including a degree of challenging behaviour. It probably helped that the staff were used to working in the dementia unit next door so very experienced. I really don't think you should accept that one instance of "escaping" is enough to justify asking her to move on. Perhaps there are other issues they haven't told you about but they really ought to be providing a full explanation. This in-between time is very difficult and there will probably be a time when your mum's other needs outweigh her social needs, but it's difficult to agree to a dementia unit when you feel she still does have reasonable social skills.

You may also want to check there's no sign they are wanting you to move her because they need the room in the residential unit!

The approach of homes to when EMI care is appropriate does seem to vary enormously, Since moving her into the dementia unit will be a big change any way, is it worth considering moving to another residential home who might have a different approach?

 

[Saffie]

I'm worried that in the dementia unit the only people she have to interact with are the staff and that she will deteriorate very quickly. There is also a cost implication for her moving as the demenita unit and she is entirely self funding.

I see no reason why interaction between residents in an EMI unit would not be possible.
As you can see with your mother, the degrees of dementia vary enormously and she may well find somone who is at or near the same stage as herself. EMI homes are more secure so your mother would be safer.

 

[su amigo]

terrible business

We moved my mum into the resdential side of a care home last September. She seemed to settle in really well and has made new friends. Within a couple of weeks she was able to find her bedroom (it's on the first floor off the main corridor) so we were really impressed.
Staff have reported that she has tried to go out a few times but she came from her own home where she could come and go although she rarely went further than her front drive. They have not reported this happening for a few weeks but yesterday we got a call to say that mum was in the garden and went out the gate (which is normally locked but left open by workmen). She was found in the local high street by the police and returned to the home.
The home has now asked for a meeting and have said that due to her declining health, they want to move her to the dementia unit. We are very reluctant for her to be moved as, physically she is very fit and able and she enjoys the company of others. I'm worried that in the dementia unit the only people she have to interact with are the staff and that she will deteriorate very quickly. There is also a cost implication for her moving as the demenita unit and she is entirely self funding.
Are we worrying needlessly?
Do we have any say about moving her or is the only choice to find another home?

Thank you for your advice in advance
Plum x

i think Raggedrobin has got it right, its poor management that she was able to escape, its not a crime to want to go out though. she needs to be kept 'OCCUPIED' nad busy, then she will not want to leave, but care homes are somehow bad at doing this, when it can be so simple.
good luck to you, and talk to her social worker, WRITE to them and to her doctor about your feelings
Vicky

 

[FifiMo]

This is one of the primary difficulties between residential and nursing care for people with dementia. Most residential homes that I have encountered do not have a locked door policy and this can then cause problems for the dementia patient who has decided to leave the establishment. It also becomes a potential legal issue because the home would not have the authority to force her to return to the home should she kick up a fuss and refuse to cooperate. They would need to have a Deprivation of Liberty (safeguarding) order from the court in order to be able to enforce this.

In the eyes of the authorities this would be considered to be a safeguarding issue, particularly when she had to be found and returned by the police.

You may wish to see if there are any new style of dementia care homes in your area. The one my mother was in for example was designed to cater for dementia patients at all stages. Ones that could cope with more freedom were on the ground floor and could move freely between the two wings there and they had open access to the secure gardens. The doors out of the ward had keypads as did the exit from the building and both were monitored by cameras too. So there was an element of balance in terms of freedom to move around but not freedom to wander from the unit as a whole. The nursing area was on the first floor and it mirrored the floor below and those who were able could move freely between both the wings via a lovely balcony which had nice seating and views out over the garden. The residents on this floor could use the gardens but because of their increased nursing needs they would be accompanied either by a carer or by family and friends.

Maybe if you found somewhere like this for your mum you would have the reassurance that she was safe from wandering and coming to harm but knew that outside of the main door being out of bounds she would have free access to the gardens and around the inside of the building.

I know we all like to help our loved ones enjoy life as much as we can but with dementia and wandering you do not have a mix that is not safe. There has been one member on here who's father got out of his dementia unit and wandered and drowned in a nearby river and there has been similar tragedies reported in the press too from time to time. This time your mum was lucky that she headed to the high street and the police found her. Next time, who knows what might happen to her.

Fiona

 

[tallpaul]

I totally agree with Fiona, with any degree of wandering you need to put safety first. My mum is just about to be discharged from hospital to a dementia specialist nursing home. It's not the environment we would choose in an ideal world, but the home we previously chose for her had disastrous consequences. Social services have investigated her previous home (see my previous post) and have found that they didn't follow safeguarding procedures in that when mum started to try and get out of the front door (several days before she fell) they should have contacted social services to let them know they were not managing her, so ss could have found a more suitable placement. They will now be monitored. That doesn't help us but should stop it happening to anyone else, or maybe they will stop taking dementia patients with their more complex needs? Or are they just driven by money?


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[Witzend]

i think Raggedrobin has got it right, its poor management that she was able to escape, its not a crime to want to go out though. she needs to be kept 'OCCUPIED' nad busy, then she will not want to leave, but care homes are somehow bad at doing this, when it can be so simple.
good luck to you, and talk to her social worker, WRITE to them and to her doctor about your feelings
Vicky

I don't think it is often that 'simple', not at all. If someone is obsessed with getting out and going home, they are not likely to be easily distracted with activities, often far from it, and some people will never really engage with typical CH activities anyway. I write as someone with many, many years of experience of dementia, and countless visits to various care homes where I have observed many residents over the years.

If someone is obsessed with the idea of leaving, it can take constant vigilance, even in a secure unit, to prevent them from getting out. It is all too easy for visitors, especially of they are new to the whole thing, to fail to realise that the 'normal' looking person near the door is not just another visitor on his or her way out.

Might add that the reverse can also happen. It was probably one of my less 'kempt' days, too much charging around, but I was once taken by a new visitor to the CH for a resident! I had warned her not to leave her bag lying around, as she just had, since it was likely to 'walk' - and she took this for a sign that I was sadly deficient in marbles, lol.

 

[Saffie]

i think Raggedrobin has got it right, its poor management that she was able to escape, its not a crime to want to go out though. she needs to be kept 'OCCUPIED' nad busy, then she will not want to leave, but care homes are somehow bad at doing this, when it can be so simple.
good luck to you, and talk to her social worker, WRITE to them and to her doctor about your feelings

I disagree with this too. A care home is not a prison and a number of older people elect to enter them of their own volition, therefore it cannot be a secure unit.
That's why there are secure care homes that cater for people with dementia.
It is unrealistic to expect an ordinary care home to monitor all residents at all times.
I think this is probably why it has been suggested to Plum that her mother is moved to the dementia unit for her own safety.

My husband's nursing home has a coded press button system on external doors and a high positioned button next to internal doors. These are discrete but serve the purpose of keeping the residents safe - which is surely the main criteria.

 

[scared daughter]

Gosh this is a very hard one, from my experience since going into an EMI nursing home my mum has deteriorated massively BUT who knows if she would anyway - for me it was the overriding safety that concerned us. Mum is quite challenging BUT she does interact with staff she even has herself a "boy friend"

I don't think you nee to feel a unit would take away all stimulation but wht you could do when you meet witht he home is tellt hem why you are worried, my mums allowed to join in with activities on the care home only floor even though she is on the nursing floor.

Shes lost interest not - but her dementia is in free fall at the moment - so I am pretty sure its the disease not the environment xx Hope that might be some help?