Sheltered housing problem

Discussion in 'I care for a person with dementia' started by aitch-boss, Mar 8, 2015.

  1. aitch-boss

    aitch-boss Registered User

    Feb 11, 2015
    Brighton, UK
    Hi everyone,

    I need a bit of advice.. Sorry for the long post.

    We've moved my MIL into sheltered housing this weekend, as a private tenant. She has ALZ, which is usually pretty mild, depending on her anxiety level. Hence the move to sheltered rather than extra care or assisted living - her dr recommended the move.

    Since she signed the tenancy last month, I've read a bit about sheltered housing not being very accepting of dementia - but didn't worry too much as she has no specific care needs, she's quite independent. Either my partner or I call her each evening to remind her to take her pills. But we wanted to move her as she was very isolated at her old flat.

    Now here's the problem. She seemed to cope well with the move, a little anxious but nothing major. We needed to pop home today and asked her to stay inside her flat in the meantime, as she's not yet used to the building or area.

    In the 45 minutes we were gone, she left her flat, door wide open (with a cat inside), wandered the corridors, lost, and walked into another resident's flat unannounced, calling for her cat. The resident was understandably furious, demanding to know why MIL can't remember where she lives. Another resident got involved, and they've had a 'house meeting' about whether MIL should be there. Tomorrow the house manager will be in at 9am and a complaint will be made - not even 24 hours after she's moved in!

    The estate agents nor the landlord asked if MIL had any sort of medical condition, and we didn't mention it as she's mild, so didn't think it would be a problem - not in the life of the tenancy anyway, which is 12 months. But the move seems so have exacerbated it hugely, she's now extremely confused and angry after the incident, has no idea where she is and 'wants to go home'

    We have no idea what to do. My partner is staying with her tonight, and I'm taking a day off work tomorrow to make sure she doesn't wander. But so worried the house manager will ask her to leave, we would have to pay the remaining 11 months of fixed term tenancy... As well as find her somewhere else to live

    But we can't be with her indefinitely. We can't lock her in her flat, but if we leave her alone she'll definitely wander again. I'm hoping once the stress has settled, so will the ALZ, but will it? Could it stay like this?

    Have we made a huge mistake? :(
  2. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    West London
    Can they tell someone to leave and make them pay rent for the duration of the lease? Surely they can't. If trouble occurs, CAB and local council. They can't throw a vulnerable person out onto the street so to speak, and wouldn't they have to give 2 months' written notice? Also, your local authority should have a solicitor who can give you free advice on the matter. Your poor MIL and poor you too

    Sent from my iPhone using Talking Point
  3. aitch-boss

    aitch-boss Registered User

    Feb 11, 2015
    Brighton, UK
    Thanks Kazza72 - the problem is, she rents privately from the landlord's son - his mother who was a resident, but who has now moved on to a NH.

    MIL is bound by an assured shorthold tenancy for 12 months, so if the housing contacts the landlord's son with a request for her to leave, she'll have no rights and will have one months notice.

    I'll have to see what the manager says tomorrow, but even if she's allowed to stay, it doesn't look like the other residents will be friendly towards her - which was the whole point of the move :(
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Hi HB
    It's a bit difficult to answer, I assume she is renting from a private landlord who owns the flat so the question is can the owners of the block tell her landlord to kick her out.
    You rent from the landlord not the home owners so it is for them to tell him (the landlord) and him to tell you that she isn't a suitable tenant in which case he is ending the tenancy not you, so how can you be asked for 11 months rent.
    If he says you misrepresented your mother's condition then refer him to here where there is a wealth of evidence that a house move does (quite often) trigger temporary confusion. As said get some advise from the CAB and don't agree to anything until you do.
  5. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    West London
    It's a shame the other residents can't be a bit more compassionate...shame on them! Hope you get it sorted out, surely the landlord wouldn't be so cold?

    Sent from my iPhone using Talking Point
  6. marionq

    marionq Registered User

    Apr 24, 2013
    I have seen similar actions at my SILs sheltered housing. The other tenants are themselves old and strange behaviour frightens them. Sheltered housing is not suitable for people with dementia because no allowances have been built into the structure to cope with them.
  7. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    It is very sad that there is not more understanding but having said that the residents within sheltered housing are there because they have problems themselves and most likely cannot deal with further problems and that is understandable.

    Has your Mother had a SS assessment lately to see what her needs are now. They may come up with a care plan to help your Mum. Moving does upset and confuse someone with dementia and all the newness around them will be lost in the short term memory so very little will become familiar. If your Mum has to move then it is important that she goes to live where her needs will be met which is why having an up to date assessment would be helpful.

    Hopefully she can stay but if she has to move, the landlord gets a new tenant quickly and says he will not hold your Mum to the 12 month period.

    Good luck and take care, dealing with dementia is difficult enough without this extra worry.
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    That is a mite unfair IMO. By definition people in sheltered housing will be elderly/frail/in some way vulnerable. And as some of us on here will know, neighbours of a relative with dementia can often have a lot to cope with. There may e.g. be repeated knocking on doors at all hours, which can be hard enough regardless of age and state of health. In my experience with FIL and this sort of thing, people can often be very kind, but it can quickly become too much for anyone elderly or at all frail. The neighbour who made the objection in the OP very likely did not understand that the person had dementia, and may not understand the disease at all - this is common enough.

    Sadly it is the case that a move may seem to make dementia worse, because the person will find it very difficult to familiarise themselves with new surroundings, and so everyday things they were able to cope with before, become problematical.

    If the tenancy cannot continue, I would have thought the landlord should agree to cancel the agreement without very hefty exit charges.
  9. Miss Merlot

    Miss Merlot Registered User

    Oct 15, 2012
    This is a compelling and pertinent post for me.

    We have been considering a move to assisted living for MIL, and - while we are fairly certain she'd settle soon enough - the first few days or week may well lead to something like this occurring...

    I'll be following to see how it all turns out - I do wish you luck in the meantime though...
  10. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    My understanding, after reading posts here for 4 years, is that many sheltered housing places will not accept residents who have a diagnosis of dementia when they move in.
    Of course, some will sadly develop it once they are already living there so there should be some understanding of the situation but possibly not the wherewithal to address it.
  11. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    One thing that occurs to me re the OP is, could anyone stay with her for maybe a week to see if she can settle and become familiar with it? If the flat is a one bed there are very good inflatable beds nowadays, that could go in the living room.

    I realise that this is not ideal, though, and may only put off the inevitable. But it could be worth a try.
  12. Bod

    Bod Registered User

    Aug 30, 2013
    Does the "landlord" have the right to sub-let?
    Many of these schemes are not privately run, but are through housing associations.
    What "rules" do the other residents have to comply with to live there?
    Should she have got the tenancy in the first place?

    What I'm getting at, is the tenancy she has correct?
    It sounds as if, for longer term care, she might be better off in residential care.
    Should she be moved, the "landlord" could not insist on the tenancy conditions be met.

  13. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Or is it a flat that was bought by the previous owner? These flats can often prove very difficult to sell, certainly for anything like the price that was paid, and renting them out may be the only option if the previous owner has had to move into a care home and often very high maintenance/service charges still have to be paid.
  14. tre

    tre Registered User

    Sep 23, 2008
    My dad lives in this sort of flat. He does not have dementia but when he moved in my mum was with him. We moved them to be closer to us because it was evident mum was having difficulties but at that stage mum did not have a diagnosis. A year later mum was diagnosed with vascular dementia. They own the flat leasehold via Peverel which has links with McCarthy and Stone and seem to have the majority of these retirement properties. There is no problem with resale as someone has suggested in fact there are people waiting for vacancies. It is also possible to rent the flats. Some in dad's block are rented and this is all fine with Peverel although they do charge a fee for changes of tenancy.
    I think the lease is pretty standard and it does state that it is not suitable for someone with dementia. We were OK because my dad was around all the time to keep an eye on mum and also she did not have the diagnosis when the lease was signed. The manager and 80% of the other residents were quite caring and sympathetic to my mum but some were a bit nasty but I think you will find this anywhere. I have to say, since having had experience with my mum having vascular dementia my dad is very understanding and tries to help those with difficulties despite being crippled with rheumatoid arthritis. However, if I am being honest, I think he might have been one of the grumpy ones had he not had this personal experience.
    Mum was not asked to leave but at the point where she was unable to tell day from night and incontinent and my dad could not cope we moved her into residential care. It was less than five months later that she died. If she had been on her own it would have been impossible for her to have remained in the flats so long.
    The manager was as helpful as could be. I have since seen this with other residents who have developed dementia. One lady in particular kept saying her key was not working, there was nothing wrong with it but she had forgotten how to use it. When the manager was on duty the door would always be opened for her without complaint but the manager is only on duty from 9.00am to 5.00pm Monday to Friday and outside these hour you contact Careline which my mum and the other lady would not have been able to do.
    I did wonder what the legal situation would be with regard to discrimination for someone with dementia but I can see it from both sides as many of the residents are very frail and often leave the interior doors to their flats unlocked and it might be frightening and again if an incident happened when the manager was off duty there would be no-one on hand to help.
  15. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    Found it very interesting to compare tre's experience as my parents-in-law lived in the same kind of set-up and in many ways the situation was very similar. MIL would never have been able to cope there on her own but with FIL to help she was able to carry on living at home until the last few months when she aggressively refused to stay in her own flat day or night as she didn't recognise it as 'home'.

    Before that she did wander around and go into other people's flats but was always gently guided back home. Perhaps she was lucky, or maybe it helped that they had been living there for several years before she became really ill, so most residents already knew her well.

    I never read the lease, so if they are standard was a bit surprised to hear that it specifically says that they are not suitable for a person with dementia; perhaps that is only applicable to a person living alone.

    Regarding the resale issue, I guess it must depend where you live and what the level of demand is. We inherited the flat, there were several already on the market and eventually we decided to rent it out. None were selling at anywhere near the estimated value. And this was in Devon, a county very popular with retirees. And you're right to mention the fees; M...S... do impose quite hefty fees when anything changes.
  16. aitch-boss

    aitch-boss Registered User

    Feb 11, 2015
    Brighton, UK
    Thank you so much for all your responses. It's been a worrying couple of days, and this forum is a great source of support.

    The reason we chose sheltered rather than assisted or extra care is that before the move, MIL was at that 'in-between' stage, where she was becoming lonely and depressed at her old flat but the dementia was manageable and she was pretty independent. At the time, she didn't need the extra care that more supported housing would offer - we expected a level of confusion after the move, but not this bad..

    Bod/Witzend - yes, the flat was originally bought and lived in by the landlord, and is now managed by her son as she's had to move on to a nursing home. The tenancy is totally private with an assured tenancy agreement, nothing to do with the housing itself.

    My partner stayed with her last night and is doing the same tonight, and I took the day off work today to stay with her. She's calmed considerably, but neither of us can be with her during the day tomorrow so we've put as many safeguards in place as we can - a note on the door, saying Do Not Leave The Flat Alone, Wait For Us - stocked the fridge with plenty of food, unpacked as many boxes as possible to make it more familiar. She has no landline phone, which adds to the worry, as she can't get hold of us if she panics - hence the potential for more wandering.

    I spoke to the housing manager today who was very understanding. She said there is no specific issue with MIL having ALZ, but as many of you have said, the residents need to feel safe and secure so her actions last night unsettled and scared them. They obviously didn't know she had dementia and therefore couldn't understand her actions. She said the lady whose flat she wandered into (and sat down on her sofa!) also moved in this weekend, so she couldn't have picked a worse flat to walk into. Apparently there are a few people with dementia in the building, and there have been a number of 'wandering' episodes, so they have experience with it. But they cannot provide care or support, which is totally understandable.

    We will have to take it day by day this week, and each of us will take turns in spending the night with her, as she's most confused at night and first thing in the morning. If she doesn't settle, we'll need to contact SS to see if we can introduce a new care plan, as we both work full-time and cannot be there 24/7 for her. However, her current 'state' would be much better dealt with with onsite care, such as extra care - but I worry that another move in such a short space of time would be devastating to her mental health.
  17. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    I can't see this arrangement working in the longer term if you are already saying you can see she needs onsite care now. You and your partner are not going to get a moment's peace and your mother is likely to remained confused and distressed as she struggles to cope.

    People with dementia respond to the present. If you move her somewhere more appropriate, then she is likely to quickly forget her current situation.

    It's not always physical assistance that is required (and that's where extra care is an excellent option); it looks as if your mother needs someone around all the time to provide guidance and reassurance. My MIL, with very mild VasD, has positively thrived from going into a care home last May, and that's mainly due to having people around who have taken away all the daily chores - she no longer has to cook, shop, clean, wash up, do any laundry, all things which were becoming obstacles in her life. And after thirty years of living like a hermit, she is enjoying the company of new friends and activities; as and when her mental capacity deteriorates, the staff and other residents will already know the real her, which I think is really important. But most of all, she is content because she feels safe and secure.

    All I'm trying to say is that you don't have to be very far down the path of not coping to benefit hugely from a care home setting, if you find the right one. Maybe before you do anything, you should explore all the options...but I'd certainly be looking at how to get out of this lease.

    Good luck and keep us posted.
  18. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    I think you said on a previous thread that your MIL was ringing you about twenty times a day, so it sounds as though even having carers going in several times a day may not be enough. Perhaps if she had a phone and could continue to contact you things may be better, but I imagine they won't be better for long.
    It is worth looking at local care homes, that way her long term future is secure.
  19. aitch-boss

    aitch-boss Registered User

    Feb 11, 2015
    Brighton, UK
    The problem with a CH is that she is still relatively young (67) and before the move, was quite independent - able to go out to the shops, buy food, make her way into town on the bus, go to dentist appointments on her own etc. We're hoping this downturn is temporary and it does seem like her confusion is going away - she's written her flat number on her hand, been out and about, and returned to her flat with no issue.

    Her problem now is that she seems quite depressed - keeps asking "why don't I like it here?" and crying. It takes time so we'll hang tight this week, and continue to stay with her each night, but next week will try and get her involved in the social activities as she usually responds very well to social interaction.

    I think we'll know in 2/3 weeks whether this is right for her, and if it's not, I think extra care is the way to go.

    Fingers crossed!

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