Have I made the right decision about extra care sheltered housing?

Discussion in 'I care for a person with dementia' started by mydiamondmum, Dec 6, 2015.

  1. mydiamondmum

    mydiamondmum Registered User

    Nov 10, 2015
    My mother has been in a temporary Care Home since last December awaiting sheltered housing.

    A flat has now come up in extra care sheltered housing where they have 24 hour carers available and we have accepted the flat.

    Notice has been given for her council flat and the tenancy agreement has been signed.

    I now have another worry that I have made the right decision about the extra care sheltered housing. My mother has told me that she wants more independence and would like her own flat again. But at the same time she likes it at the Care Home where they treat her very well (apart from laundry issues which are not that important in the scheme of things)

    The tenancy has started but mum has not moved in yet, I have been getting the flat ready for her.

    The other day when I was leaving the flat on my way out I met a resident who I have seen a couple of times there by the reception office. I asked her how she was and she said she was dirty. I asked her if she had told a carer. She asked me if I could help her get one.

    I rang the bell of reception and a carer came out and I said can you help this lady as she needs a carer. The carer told her in a very disrespectful and scolding voice ‘go back to your room’ I was shocked by her abrupt unkind manner and said don’t speak to her like that.

    The carer said to me you don’t know how many times we have to deal with this lady we have already seen her tonight. The resident screamed don’t be mean to me and I said to the carer don’t they train you to be kind to the residents in your care.

    She didn’t answer she looked like she was biting her lip wanting to put me and the resident in our place but thought better of it. Things fizzled out after that and I asked the lady for her room number and if she had any relatives who came to visit her and she told me that she didn’t.

    This has played on my mind ever since. I have reported it to the local age UK and they told me that this is the second report like this they have had and are going to address the matter.

    My mother was offered a place there once before but I turned it down one of the reasons being that I never saw any resident using the communal lounge and socialising is very important to my mother’s wellbeing.

    Hopefully this was a one off and usually they do show care to the residents. I hope. But what if I have got this wrong. I need to make decisions on my mother’s behalf and I am her only family member.

    She was looking forward to going to her new flat. We can’t predict the future we can only hope that we make the right decisions.

    I just needed to share this with someone as it has really been getting me down with worry.

    I know most if not all of you on this forum will understand that.

    Thank you for listening.
  2. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    The carers are paid to care and they should be doing just that. There will always be one that is in the wrong job and if it is just one then that can be sorted but any more means that the management are not managing their staff.

    If you have come across more than one then there is reason for great concern.

    The lounge not being used is up to the residents. If they prefer to stay in their rooms this does not really reflect on the management but as you say your Mum is sociable then she will be missing out on company.

    You have a difficult decision to make and I can understand your concern.

    I hope that your concerns can be sorted and your Mum enjoys some special time in her new home.
  3. mydiamondmum

    mydiamondmum Registered User

    Nov 10, 2015
    Thank you for your reply Jay.

    The thing is the decision has already been made and mum is due to go there next week.

    I can only hope and pray for the best.

    If for any reason I feel that she is not getting appropriate care I certainly will be fighting.

    Sharing helps.

    Thank you.
  4. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    My parents lived in an extra care flat before both went into full time care.Although there are carers on site 24 hours a day they mainly stick to clients care plan eg 4 visits a day.They are also there for emergencies,falls,illness.Toilet issues are not an emergency and are only dealt with on scheduled visits
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    I have seen some fantastic extra care housing schemes and some which are not fantastic but are good.
    That carer's behaviour was inappropriate and I would also suggest that you report it directly to the Care Quality Commission and to adult social services safeguarding team. It isn't acceptable behaviour and those agencies are responsible. It is particularly heartbreaking when you know someone doesn't have any family looking out for them like the lady you saw and she is so fortunate that you have taken an interest and helped her as well.
    With regards to your Mum - she will be a nice flat with carers visiting her and some extra care use their lounges every day and have a lunch club but perhaps you could get your mum into a local lunch club - either one run by Age UK or by the local social services - the day centres are often excellent. We also have a Crossroads day centre which people love - they are all over the country. The Alzheimers society have good clubs going on in some areas too. I don't know if you belong to your local carers organisation but they are a gold mine of information so it is worth going along to your local carers cafe and people will tell you lots of local info.

    Your mum also has the key to happiness - her daughter looking out for her and fighting her corner so whatever decision you have made together I am sure it will work out and if it doesn't work in the longer term then there are other alternatives - there is always a way around things. Because you have a good relationship with your Mum and you are working together she will tell you if there are problems that need to be ironed out so do try not worry too much at the moment. See what you can build around it.

    Thinking of you xx
  6. mydiamondmum

    mydiamondmum Registered User

    Nov 10, 2015
    fizzie, what a lovely up lifting reply. Your words have made me feel much better and optimistic. Which is generally my natural nature, but sometimes I need reminding.

    I am going to celerbrate with another cup of tea.

  7. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    Sorry, you might not appreciate my view at this stage, but I feel that whilst extra care accommodation is ideal for those with physical disabilities, it is not necessarily appropriate for those with dementia. I understand it depends on how advanced it is and if their personality has changed for the worst so please disregard these views if the circumstances don't apply to your mum.

    I was offered a place for my mum a year after my dad's death when she was struggling at home, but I turned it down as I knew her behaviour would hugely irritate the other residents. The repetitive questions, the forgetfulness, the bad temper when she got frustrated meant she was unlikely to be be able to socialise as she would wish or make new friends. Mum and Dad themselves said, long before Mum had problems, that if they were physically disabled and confined to a wheelchair in a CH, then they wouldn't want to be in one that catered for dementia residents as it would drive them to distraction. Maybe unsympathetic, in some eyes, but actually quite realistic. I feel it very likely that the person with dementia is likely to be subjected to unpleasant comments from the other residents.

    Mum moved into a care home six months later and that was a far more appropriate solution. Extra care housing is great for some but should not be regarded as anything like equivalent of a care home in terms of the care and support provided. That's why, on the whole, it's considerably cheaper.
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    I would just like to respond to that by saying that I visited an extra care housing scheme a few weeks ago - they had the whole range of residents from significant memory problems to those with no needs. It was a real community. It was safe and vibrant and residents were very well looked after. The manager was extremely good. There were activities every afternoon and most evenings and everyone was reminded and encouraged to join in from the most severely physically disabled to those with significant memory challenges. The manager encouraged the community to look out for each other and the carers were extremely supportive and very caring.

    However I would also agree that some people need a care home whether they have dementia or severe physical disabilities but a care home doesn't suit everyone either.

    It very much depends on the person, the environment and the quality of the staff and of course the changing needs of the person.
  9. nellen

    nellen Registered User

    Mar 17, 2009
    Its very hard to know what's best for your mum and you'll always worry and keep asking if you made the right decision for her. I think you can only do what you think is best for your mum.
    I'll tell you my experience of my mum being in extracare, My mum has spent 5 fairly happy years in extracare housing. She has dementia and physical problems that have gradually got worse and she became ill and after a hospital stay, went into a nursing home in September. Mum had carers up to 4 times a day to help her with personal care and heating up meals. She enjoyed the independence and of having her own flat and being able to close her front door and to be sociable when she chose to. They had parties for birthdays and a programme of weekly activities etc.

    There were if I'm honest, difficulties whereby carers were in a rush and sometimes took the easiest option - no one was harsh or unkind and they all spoke (as far as I knew) respectfully to my mum. I Was sometimes concerned that the communal lounge was empty especially at evenings and weekends. I made sure my mum got to the day centre 3 days a week and I asked if the carers at the extracare would encourage her to join in the activities in the communal lounge as much as possible.

    I did think that my mums dementia put some of the residents off and in the past year or so noticed that she was being ostracised by some residents. I had a word with the manager reminding her that they should be promoting the spirit of inclusion, not exclusion.

    Basically whether extracare works well or not is down to good managers and well trained staff. You may find it works out well for your mum and it helps to let them know you're are keeping an eye on things and are prepared to act if you're not happy with how's things are - I used to ask for a meeting to review progress of mums care plan and invite mums social worker and any other agencies involved - who I'd already told of my concerns and they would support me with the manager and we'd draw up an action plan so I had it all written down.

    If you aren't happy for your mum to move into this extracare facility I would check if you have some time to back out if you change your mind, without jeopardising her chances of another place in the future.you would need to explain your reasons to the housing association.
    Good luck with it. Let's us know how it goes for your mum
  10. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    ...and the attitude of the other residents. They can't be 'trained' like the staff, and they usually have health problems themselves.

    I wasn't trying to be unhelpful. I guess mydiamondmum has to try it and see how it pans out. I really hope it all turns out fine :)
  11. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    My mum is in extracare, and so far it is working well. It was made quite clear (in a very polite way) at the start that if she gets to the stage she causes issues she would be asked to leave. I am very happy with this as the building is home to many people, and wandering or agitation would not be fair on the others.

    The carers are fond of my mum, but are also firm to get her to allow them to clean her flat.

    It isn't a care home so whilst the carers are on site, the carers only come for prearranged calls, just like if the person was in their own home. There is a call button and also pendants which work in the same way as in your own home. The carers would respond to the call button for an emergency like the call centre does.

    The lounges are used for activities on a regular basis but are often empty, which I would expect, as the flats are their home, and the lounge is the community centre, so not like a care home lounge. I know that after my mum had a stay in a rehab home after hospital I would move her to a care home once she no longer socialises to join in the activities.
  12. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    I also think it'll be interesting to see how mydiamondmum's mother gets on living independently after 12 months of 24/7 supervision and company in a CH.

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