Advice please, care, care homes, when's the right time?!

Discussion in 'Middle - later stages of dementia' started by Lets_Stop_Time, Aug 24, 2015.

  1. Lets_Stop_Time

    Lets_Stop_Time Registered User

    Aug 23, 2015
    45
    So Mother In Law (MIL) has vascular dementia + Alzheimers and she is 62. We noticed the signs about 4 years ago with official diagnosis 1 year ago.
    She has been through memory clinic, got some funding for day care 1 day a week and has medication.
    Me and my other half have very young children and he works long hours and shifts, so its hard for us to support her care. Her other son lives with her but works full time. We have a half hour carer visit in the morning and at night to put her to bed. Her son comes home to give her lunch. And have crossroads visit for a couple of hours one day.

    MIL has started leaving the house and locking herself out or wandering to elderly neighbours house. She was found in the rain in her nightie, so clearly we are scared for her safety. Her sons idea is to hide keys and lock her in, he leave the back door key so she can get in back garden.
    Me and my other half dont think thats acceptable. Shes left alone for longest length 7 hours.
    She seems to be starting to have toileting issues now, forgetting where the tissue goes after use etc.
    She doesnt clean, bath or shower herself. Cant cook, needs help dressing etc. Cant hold conversation anymore or remember names apart from her sons who lives with her. She cries a lot now.

    She had a possible blackout last week and hit her head on a cupboard and had a fit. Luckily in the presence of the morning visit carer. She was taken to hospital and admitted. Scan showed nothing really so grateful it wasnt anything huge. In hospital she wasnt using the toilet herself and having accidents a lot more, could be just because of fall or strange place maybe.
    She is allowed to be discharged as medically shes fine. But we have said no because we feel she now needs more care.

    Do you think we are right in this? We fear when shes alone that something will happen or she will wander and get lost/be dressed inappropriately for weather/season also. Her son thinks its okay to lock her in and he also handles her care with regards to showering etc. He often stays away/out overnight and on each occasion she goes into panic mode and wanders and cries.
    We think a care home would mean better care, not being alone, safety, on time with medications, better meal times.
     
  2. Lets_Stop_Time

    Lets_Stop_Time Registered User

    Aug 23, 2015
    45
    just to add been waiting days for social services to talk with us.
    We have visited a few local care homes who are dementia/alzheimer care
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,729
    Female
    London
    I don't think its ok to lock someone in. We can't just do that and hope for the best, what kind of care is this? Apart from the fact that it seems to make her distressed and she can't look after herself, it's also dangerous as she wouldn't be able to leave the flat in event of a fire, and what if she hits her head again or has a fall? It's also cruel to leave her with no one to talk to and no social interaction. She needs more help. It doesn't look like she should be left unsupervised anymore so she either needs more day care and sitting service to fill the time her son is at work, or she needs to go into a care home. For all of this she needs another assessment and the son would do well to get a carers assessment as well. Remind social services that they have duty of care for a vulnerable adult at risk. If she is at risk of wandering and therefore potentially bringing harm to herself, they cannot wash their hands off her. If you've been waiting days, ring them again and insist that this is an emergency as she is not safe.
    My OH needs 24/7 supervision, and there is always someone with him now, at the day centre or at home. The day centre keeps him safe, gives him activities and social stimulation and a hot meal.
     
  4. Lets_Stop_Time

    Lets_Stop_Time Registered User

    Aug 23, 2015
    45
    That's exactly how we feel. It's a horrid cruel existence and we don't like it. Yet her son insists she doesn't need a care home and that it's okay. My other half found her crying and distressed behind the locked door searching for her key, he didn't know at that time her other son had locked her in and when he realised it caused him a lot of upset to he actually came home & threw up.
     
  5. curtainsgalore

    curtainsgalore Registered User

    Nov 2, 2014
    46
    I think it may be time to put some groundwork in and look what's available in your area, EMI homes, very sheltered housing association homes, residential homes which have an area for people not too advanced with dementia and then an area for more advanced. It will give you the information you need if or when your loved one may need to go into care and you won't have to search around in a crisis. Your Mother will get progressively worse and with vascular dementia it can escalate very quickly. Best get SS to maybe get more carers popping in or more day care, do that she doesn't have such large windows of time by herself.
    Good luck it's very worrying for you.
     
  6. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    My short answer is YES, I think you are right that she needs more care.

    It is not okay for her to be locked in her house. If there were a fire, she would not be able to get out and could be seriously injured or die. Could her son live with having caused that?

    If she is not safe to be left alone, then she either needs 24/7 live-in carers, or she needs to be in a care home/residential facility.

    To temper the bluntness of what I've written above, let me tell you my own story.

    My mother is 73 and until January, lived alone with no services, 100 miles away from me. She has had a string of minor health issues over the past couple of years and I knew something was wrong, but didn't know it was dementia. I am an only child, as is she, and she had no family in the area who could help (one cousin who is elderly and infirm; my parents divorced when I was young and my father is dead).

    Early one morning in January, I got a call from a neighbor. My mother had been found, wandering, disoriented and distressed, no coat, very cold, and had fallen (black eye, bruises). A Good Samaritan just happened to find her and to knock on the nearest door, who just happened to be a neighbor whom I know, and who called me. My mother was taken to the ER/A&E department, assessed, and transferred to another facility where she spent about 2 weeks under section/in a locked ward/in the Geriatric Psych ward. She was determined to not have capacity and to need 24/7 residential care and is now in a care home/facility/assisted living here in the town where I live.

    My mother will tell you she loved living alone, was very happy, and that everything was fine. She had lots of friends and was very busy all the time. She played bridge every Wednesday night and saw friends regularly, Jane on Thursday and Mary on Friday and so forth.

    The truth is, my mother could no longer drive safely but was still driving (a nightmare accident waiting to happen). She was a smoker and I lived in fear she would start a fire and injure/kill herself or others in her building. She could no longer do her shopping or cook a meal. She lost a great deal of weight and was living on ice cream and coffee and biscuits. She was not able to clean, do laundry, or wash herself. Her home was filthy, unsafe, and knee-deep in clutter/garbage. She could barely pay the bills. She threw away all her mail, as she couldn't cope with it (for the last several years). She had started giving money over the phone and in person to scammer "charities," to the tune of over three thousand US dollars. She couldn't sleep. She was anxious and upset all the time. She had no friends and very little social contact. She hadn't been to bridge club in months, and when she did go, couldn't play. She had stopped her regular Friday night visits with Mary over a year and a half ago. She could not take her medications properly and was regularly over-or-under dosing herself. She refused to go to the eye doctor (last visit was 2009) despite barely being able to see. The list goes on, but she was "fine!"

    After six months in the care home, where her medications are monitored closely and given to her properly and she is offered three nutritious meals a day, she is eating and sleeping regularly and has regained the weight she lost. Her hair and skin look much better. She no longer smokes and her cough has disappeared. Laundry and cleaning are done for her and I take care of all the mail and bills and financial things. She has no more anxiety about what she is "supposed to do" but cannot do, and her anxiety is gone. She has friends at the care home and people to talk to whenever she wants. She is taken out to lunch at least once a week. There are activities planned, or she can be alone in her room if she prefers (but the staff tell me she is never alone in her room except at night, always in the common areas, talking to people). There is someone to make her a cup of coffee whenever she wants it.

    If I had known she had dementia, and how bad it really was, I would have moved her into a care home much sooner. She was really suffering and anxious and distraught living on her own, and that is all gone now. I don't know if she is happy or if she can be happy, but she is safe and more than content. Care homes are not necessarily a bad thing, although never an easy decision. I had the decision taken out of my hands, and it was precipitated by a crisis, but waiting for the crisis was excruciating and also I was remiss in making sure my mother was safe and that others were safe from her. That part still haun

    So that is just one story, about one situation, but perhaps it will provide some perspective for you.

    I hope you are able to find a solution for your MIL.
     
  7. Emac

    Emac Registered User

    Mar 2, 2013
    180
    Yes

    I read your post and wondered why you were asking the question when the answer seems obvious. If she becomes distressed when left alone - she needs 24/7 care and company. However it's easy to see the obvious when it's not your 'loved one' under discussion isn't it? :eek: It seems such a huge move - which is why we question and perhaps why her other son keeps saying she's fine? You have helped me decide to take some action on my own Mum. My Dad leaves her in for several hours at a time locked in, and though I don't worry she will set the house ablaze because she doesn't attempt any form of cooking any more, she is almost certainly distressed- and that's not meeting her care needs. You should absolutely ask for a SW assessment and find out what services/care options are available to you all. You are doing the right thing. Good luck!
     
  8. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    I would ask the hospital if you could have a best interests meeting-this would involve their social worker and hopefully you can have your concerns rightfully addressed and on file/paper so this would be on record that you have raised concerns about MIL,s welfare..
    The hospital sw would liase with the local ss and then speed up the process of things if a care home is not immediately available,saying that maybe as your MIL is technically living on her own,but is imprisoned against her will,this would raise concern about her being discharged without a proper assessment and maybe be able to go into a home for respite,while a place becomes available. Please dig your heels in and make the authority aware that they will be responsible if a tragedy does and nearly did occur!


    Sent from my iPhone using Talking Point
     
  9. Lets_Stop_Time

    Lets_Stop_Time Registered User

    Aug 23, 2015
    45
    I know the answer is to out her in a care home, I've looked at several this week. I just needed someone else to tell me it's the right thing for her situation. Just needed someone to look from the outside.
    She's currently in hospital after a fall which thankfully the carer was there to witness. But we have refused her discharge as we can't care for her and I don't want her left alone at home. Waiting on a social services referral but unsure what that will achieve
     
  10. Lets_Stop_Time

    Lets_Stop_Time Registered User

    Aug 23, 2015
    45
    I dread to think what could have happened if she had been alone.
     
  11. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,475
    Radcliffe on Trent
    In your first post you said that the other son lived with her. You haven't said whether mum would be self-funding or not. If she would not be self-funding, LA will have to agree that a care home is the best way to meet her needs before they agree to contribute to the fees.
     
  12. Lets_Stop_Time

    Lets_Stop_Time Registered User

    Aug 23, 2015
    45
    We would have to sell her house to self fund
     
  13. Lets_Stop_Time

    Lets_Stop_Time Registered User

    Aug 23, 2015
    45
    Currently applying for deputy to be able to deal with her financial stuff
     
  14. Lets_Stop_Time

    Lets_Stop_Time Registered User

    Aug 23, 2015
    45
    Good Luck to you to! I'm sorry we have to experience this
     
  15. Beate

    Beate Registered User

    May 21, 2014
    11,729
    Female
    London
    If the assets are there, she will be classed as self-funding. At least you dont have to rely on SS then.
     
  16. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    What will your brother in law do if the house is sold? I wonder if this explains some of the reluctance on his part to move her into care.

    Btw, I agree you would be doing the right thing by your MIL. Home alone, locked in, scared and lonely is no way to live.
     
  17. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,475
    Radcliffe on Trent
    #17 Pickles53, Aug 25, 2015
    Last edited: Aug 25, 2015
    The advantage of being self-funding is that you don't need SS approval for a move into care. This was my mum's situation. We didn't have any SS involvement at all, apart from a very early meeting when I was informed that mum's needs were not serious enough for them to get involved. So I didn't involve them again when things went downhill and mum's CPN and OT did not raise any issues when we decided to go ahead, after a fall which wrecked what remained of mum's mobility.

    I agree with Chemmy that this would be a better and safer option for your MIL than being locked in a house alone for hours. Care homes have to apply for Deprivation of Liberty Safeguarding orders which are intended to ensure that nobody is deprived of their freedom unless necessary for their safety. I don't think this applies to a person's home (though more knowledgeable TPers may be able to clarify this) but the ethical principle is the same.
     
  18. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    My mum was, and my MIL is, self-funding and we had no involvement with social services either.

    We visited CHs, chose the ones we liked and simply went ahead with the arrangements. It can all be sorted out very quickly, as long as there is a room available and the manager concludes, after an assessment, that the CH is suitable for the person's needs.
     
  19. jojob71

    jojob71 Registered User

    Jun 12, 2015
    4
    You are at the point that I was last year. My mum was doing exactly the same things. Walking around in her nightie, knocking on neighbours' doors because she thought they were talking about her. There is a fast track into a care home if your mum doesn't have assets.
    I phoned social services and told them that my mum was talking to a wall because she thought it was her sister (who had died years earlier). If you phone the local mental health department they will send someone to assess your mum immediately. Within two hours of phoning, my mum was in hospital being assessed and given medication. She didn't ever go "home". She moved into a fully funded flat with carers and then unfortunately she had to go into respite and then full time residential care.
    Your mother in law needs to be assessed and given the correct medication for her own safety. You really do need to push for this as some hospitals, A&E departments and GPs will take forever to diagnose. If your MIL has already been assessed by the memory clinic then she will have a diagnosis and the social services have to listen!
    Locking her in her home isn't going to help her. It will only aggravate her symptoms. Trust your instincts and push for what is best for her.
    Good luck x
     
  20. Emac

    Emac Registered User

    Mar 2, 2013
    180
    Time for a care home

    Me too! It is just horrible to be in a position where we have to make this decision. My Dad announced today that he thinks it's time. he can't do this any more and doesn't think Mum is getting what she needs from him - so that is progress. If it helps at all I remind myself that if she had any other terminal illness requiring round the clock care you would not feel bad about putting your loved one into a hospital or hospice to be looked after- so why do we even think that we should be able to care for someone with dementia on our own and at home?:confused:
     

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