1. Greens

    Greens Registered User

    Apr 29, 2018
    12
    There are three of us, two sons and me (daughter) supporting our Mother who lives alone after my father died in January last year and shortly afterwards Mum was diagnosed with Alzheimers (although we had known that she had difficulty with her memory for the previous four years but she refused to see a GP about it). We are all in our 60's and working so we support mum each Saturday, taking her to do her weekly shop. We also take her to various hospital and doctors' appointments, arranged for a gardener to come on a regular basis and a podiatrist. None of us live in the same town so it takes time to travel to and fro as well as the time we spend with Mum which we have to fit in with work and our family commitments. We also do maintenance work around the bungalow etc. Mum misses dad terribly which is understandable as they had been together 70 years but recently she has become more demanding of us and critical. She has no friends and will not go to a lunch club or day centre to get out of the bungalow and meet new people. The number of phone calls she makes to us demanding attention has ranked up, last month she made a total of 420 to our landlines. Some days it is relentless and you can come home to 18 messages each one getting more aggressive and insulting because we haven't answered, simply because we are not in (which Mum can obviously not comprehend). Now she want to come and live with one of us because she doesn't want to be alone and wants some company and someone to 'care' for her. Our lifestyles are not compatable for several reasons and we have each tried to explain this but because of the Alzheimers she cannot understand or appreciate this and she just becomes angry and threatens to 'walk the streets'. We have very recently had a couple of concerning incidents where she claimed she had got in a car with a couple of complete strangers. We recently all met with her GP, who was very good at explaining to her that we do care and are concerned for her safety and talked about living somewhere with support e.g. Extra Care which she has flatly refused in the past thinking it was a Care Home. He asked her to go and look at a particular scheme and then we would meet again. We have an appointment to look round the schem next week but Mum is already saying she won't go and live there anyway. She can't remember the meeting with the GP and is trying emotional blackmail on each one of us to get us to agree for her to live with us. Sadly, the more aggressive and critical she becomes the more emotionally draining it is and now all three of us are depressed and dread going to see her as we don't know what she will be like. We don't want her to be frightened and do want her to live someone safer where she would have the option to live independently but also have the opportunity to make friends with others living in the scheme and join in activities if she wanted to. We would like her to be happy and live the best life she can but she is so negative about everything that it is really draining. She left her key in her front door the other day and it was fortunate my brother found it as anyone could have let themselves in - if she did that in an Extra Care scheme she would still be safe. Has anyone encountered this difficulty and how did you manage the situation?
     
  2. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    What a lot of problems you have between you to try and resolve all these difficulties.
    To put things into a little bit of perspective - if she was married 70 years, she has got to be at least in her late 80's possibly in her 90's - you don't say her age.
    To be brutal, this is a problem that time will resolve and then you and your siblings can get on with your own lives.

    But what to do in the meanwhile....?

    I would suggest finding out as much as you can about Alzheimer's - as it is a steady decline. Guessing that she is at mid stage, or maybe earlier - this is when it is most difficult for families to arrange suitable care, that will fit in with their own lives. As the disease progresses, she will need a lot more care, and will probably go into a nursing home - or old age might catch up with her first.

    I think you need to get social services involved and a care package worked out for Mum. She needs someone there to keep an eye on her, but perhaps yet, does not need 24/7 care. My next door neighbour is 87 and in this situation, but she has no children. Her only relative is a niece who lives 300 miles away. What they have done seems to work very well and that is am alarm button which she can press if there are problems/ accidents, and that alerts the care agency she uses, they then ring a neighbour (me) who pops in to see if she is OK or what help she needs. The care agency sends carers ( paid for privately in this case) for 2 x 2 hours daily to be with her, do her housework, shopping etc etc.

    Perhaps you and your siblings could arrange something like this for Mum. With regard to the phone calls, can you not leave an ansaphone message aimed specifically to Mum saying that you are at work and will ring her later.

    I hope some of this will be helpful and that you can resolve your problems with Mum

     
  3. Greens

    Greens Registered User

    Apr 29, 2018
    12
    Thank you Maryjoan for taking the time to reply. I guess I should have said she is 88 years old and otherwise fairly healthy. She flatly refuses to have a home help or a carer and won't have strangers in the house. We did support mum with her decision to have a floor draining shower installed earlier this year so the bungalow meets all her physical needs. It took twelve months to get her to accept a gardener so it may take another twelve months to accept a home help. I thought the 'home help' might be a bit of company for her and some practical help with housework but she flatly refuses. She won't have a Care alarm installed (I tried when my Dad was alive) everything we suggest receives a 'No'. She has no friends or neighbours to look in on her during the day. We bought a dementia clock for her to tell the day the date and time, we write a weekly menu which goes on the fridge and buy ready meals as she struggles with preparing a meal from scratch but she has little or no appetite (but enjoys toffees and chocolate). I have done some research and believe she is in the middle stages - she doesn't require any personal care) she does need prompting to take her medication and we have a weekly pill box which I phone each evening to prompt her to take. We are open to any practical suggestions we have not thought of but are all in a place now where we need to protect our own health. Adult Social Care are not interested in helping as in their words if she can say 'No' she has capacity. We don't want her to go into residential care as the thought of it frightens her and because she doesn't need it at the moment but we can't give her what she wants as we can't be with her 24/7. Thank you again for your reply and I will take up the suggestion of putting a message on the answerphone speific to Mum
    .
     
  4. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    1,047
    #4 Rosettastone57, Sep 28, 2019
    Last edited: Sep 28, 2019
    Do you have lasting power of attorney for finance and if so is your mother self-funding? If the answer to these questions is yes on both ,then you are in the same situation that my husband and I were with my mother-in-law.

    My mother-in-law had been on her own in her own property for many years. My father-in-law had died many years ago she had a pre-existing mental health condition and the dementia eventually came from that condition and she was diagnosed with mixed dementia in 2015. She had been needy and demanding and controlling all her life and my husband and I had developed numerous strategies to deal with this. We just carried on with the same strategies when the dementia came along. Firstly if you wait for your mother to agree with you or see your point of view you will wait forever. There comes a point in this illness where your mother's needs will outweigh what she wants to happen . I think you have now reached this point.

    If you have lasting power of attorney and your mother is self-funding you can simply organise carers yourself . Don't discuss it with her. Just tell her that someone is coming a nice friend or lady is coming to bring her a cup of tea in bed and breakfast in the morning. I told my mother-in-law that the carers were free. I never discussed any finance with her and as we had a power of attorney with online banking and the post was redirected to me , she never saw any bills or bank statements. She started out with a morning visit 7-days a week ,as the condition deteriorated she had visits lunch time and evening. Of course she was rude abusive and aggressive to be frank we just ignored it. My husband and I had made the decision many years ago ,way before dementia, that we would never under any circumstances put ourselves in the position where we had to care for my mother-in-law full time. We were local to her about 5 minutes drive away . I organised the local authority to set up a care link for her and she wore this pendant around her neck again we did not discuss it with her we told her it was happening. My husband told her he was in charge and carers were not negotiable.

    I have no personal experience of the extra care housing scheme you have described I'm sure other posters will be along soon who have personal experience of this. It came to the point with my mother-in-law that eventually she was no longer safe in her own home and the only option was full-time care . She was anxious, lonely and wandering at night and required 24/7 supervision. You may find in an extra care facility, you'll going to have the same difficulty with supervision.

    You'll need to start lying to her ,or therapeutic untruths, it's the only way to get the care she needs . She is unable to see any logic or reasoning it doesn't matter how much you try to persuade her she won't see your point of view.
     
  5. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    I totally agree with @Rosettastone57. I do think you need to get in touch with her social services and tell them she is a 'vulnerable adult' living alone. You are doing your best and trying to put things in place, but at the end of the day, you are too far away should there be an accident, or she should have a fall, and she needs the protection that social services can offer her. She will argue and say no, but with this disease the time will come when she will argue one minute and the next she will have forgotten that she has argued. Contact Social Services, again - sometimes you have to keep badgering them.
     
  6. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    318

    What a ridiculous think to say. If she can say no she has capacity! My mothers favourite word is no and would definitely tell Social Services no and refuse any help offered. However she strongly believes there are two girls living in the bedroom next door who keep stealing her handbag and all her money. She also thinks her mother is still alive and constantly says she wants to go home to her mum. I would definitely phone SS and tell them she doesn’t have capacity and if she comes to any harm you will be holding them responsible. Then I’d follow up with an email.

    Then again I wouldn’t take any notice of me because I can’t even follow my own advice. X
     
  7. Baker17

    Baker17 Registered User

    Mar 9, 2016
    274
    It is a ridiculous thing to say, but, my OH had been assessed by the consultant at our local memory matters team as having no capacity but was deemed to be able to say where he wanted to live by a judge in the family court which led to him being moved from a lovely residential home to one who after assessing said they could meet his needs. Three months later they decided they couldn’t it’s taken another eight months for SS to decide what to do and he was recently moved to another home, and I had to do the move, it’s the worst decision that incompetent professionals??? have ever made. I wouldn’t wish what I’ve been through on my worst enemy.
     
  8. TNJJ

    TNJJ Registered User

    May 7, 2019
    663
    Female
    cornwall
    I have this with my dad's carers. They say he has capacity as he can say Yes or No.Really? But can he retain it and then make an informed decision? I would have my doubts..
    They are never with him long enough.It is us as carers that know more than they do(professionals that is)!
     
  9. Bod

    Bod Registered User

    Aug 30, 2013
    1,169
    Forget, Extra Care living, you are beyond that point now.
    Start looking at Care Homes that take Dementia.
    Visit a few in an area that is convenient to you all for visits. You are looking for a "homely" home, rather than a boutique hotel place. It might be a little scruffy, but do the staff enjoy their work, and there is no smell of stale wee. (fresh smelling wee, accidents do happen).
    The main question to ask, "What does the Home do should a resident become difficult to handle?"(Violent/noisy/constant walking)
    Be sure you are sitting down when asking the costs, particularly if she will be self funding.

    Bod
     
  10. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,274
    Female
    Chester
    I moved my mum into extra care housing 5.5 years ago, and it has been perfect for her but it doesn't suit everyone with dementia.

    She certainly had a high level of anxiety when she moved in and the enclosed nature of the scheme gave her the support she needed.

    My mum was self funding, and amenable to agree to move there, although not happy about it. I was fully aware that it might not work and she might need a care home. Before she moved in it was made clear to me that any anti social behaviour connected with Dementia would mean she wouldn't be able to stay - eg wandering, aggression etc. It is after all home to many others who are entitled to quiet enjoyment of their lives.

    My mum could make herself cups of tea, walk to the shops from my house, and with the aid of a prompt manage her own medication. She was frying eggs on a Saturday for lunch when she first moved in.

    All you can do is view the scheme and see if you think she would cope and get them to assess her. Where my mum lives is a housing association and required a SW assessment, the SW was well aware my mum didn't really understand what was going on, but my mum also clearly lacked capacity for these decisions, although as POA wasn't through the solicitor assessed her to have capacity to sign the purchase document (her flat is shared ownership and when asked if she understood she did say unprompted that she was signing for where she was going to live).

    Everyone has different opinions of what is suitable, but my personal opinion is that move the PWD (person with dementia) to somewhere appropriate for now. I fully expect to move my mum to a care home at some stage with some dementia level of care, but as the confusion accelerates she will likely need further moves.

    If you want to set up care at home, please take on board @Rosettastone57's post - you have to be strong and in my opinion 'hard nosed' when they say they don't want this or that. If you have power of attorney and your mum is self funding just get on with it.

    My mum wanted to live with me and have me care for her, my kids were 8 and 12 at the time of her crisis, and I work part time. Mum's behaviour wasn't such that she could live with me and the children, she was very nastily critical of my son every meal time (he has dyslexia and at that age still hadn't mastered a knife and fork fully) and she wanted my dau to do jigsaws every evening when dau was trying to do homework. She was very nasty to my dau for the 3 months she stayed post crisis until we sorted out her flat, although I wasn't aware of it at the time (I was at work when dau came home from school). Mum kept having a go at me for being bossy and organising her and telling her what to do, I had no choice, although her words hurt at the time I got on with it, and only later with more understanding of dementia did I realise it was the dementia talking.

    Don't try explaining why she can't live with you, she won't understand, say that's not possible and change the subject, or walk out of the room.

    If she is not self funding you need to advise SS that you can no longer provide the level of support you are and she is a 'vulnerable adult'. They are responsible.

    My mum never went through a phase of phoning me, she broke her phone, but I think in reality she had lost the ability to use it anyway. Different things happen at different stages.

    If your mum won't accept carers and sheltered extra care isn't suitable then she needs to move into a home. If you are not self funding you need to work out how to engineer this for her.

    I think extra care would be better for her than home carers, as home carers are only there for a couple of hours a day, but even in extra care, the carers would only come to flat to prompt medication. My mum was always a joiner in, and after a couple of weeks of the scheme manager taking her to activities she got herself there, but it did require some self direction, which your mum might not have anymore.

    You don't know how much your mum might settle down in extra care and if the GP is onside and you can engineer it, it is worth a try, but the next step is a care home if this fails.
     
  11. ashtreex

    ashtreex Registered User

    Dec 16, 2018
    12
    Female
    London
    Hello Greens, what a difficult situation you have. I went to see a relationship therapist the other day because I was finding it all so hard to deal with. He recommended a book which I've found very helpful in how to deal with people with dementia - literally, strategies for communicating with them (if you can call it that) and managing them. "Contented dementia", author Oliver James. It also advises on care homes.

    Also he warned me that you should see if there is a non social services advice person you can consult before calling on social services, because as you see above they are only concerned to save money and do as little as they can get away with. It turns out we do have a fairly newly established advice centre, jointly run by several dementia charities, so soneone's coming to see us soon. I hope this helps a bit.
     
  12. Greens

    Greens Registered User

    Apr 29, 2018
    12
    I can't thank all of you enough for taking the time to reply. Unfortunately we do not have a lasting power of attorney (mum definitely wouldn't agree to one) and therefore mum controls her own finances and hence comes the difficulty of paying for a home help or carer as we can't afford to fund it.. She would be self funding either the purchase of a flat in Extra Care or rent and service charges in a Housing Association Extra Care Scheme. It is a very sad situation and we are not unsympathetic to the magnitude of her loss and the fear and anxiety from the Alzheimer's makes it even more distressing for her. She repeatedly says she doesn't want to live without dad which is upsetting in itself but understandably she feels she has nothing to live for even though we feel she could get more enjoyment out of life if only she were willing to go to a lunch club or social activity or live in Extra Care etc We are hopeful that a visit to the Extra Care Scheme this week and another meeting with the GP will progress towards moving somewhere more suitable although each scheme has a waiting list. I have in the past had Mum to stay for two weeks when dad was in hospital and that was a difficult and stressful time for me and my husband but now she is more critical and insulting and very emotional as she is grieving and neither of us feel able to cope with this 24/7 and I now work from home. I will try Social Care again this week and ask them to assess her.
     
  13. whetstone woman

    whetstone woman Registered User

    Feb 18, 2014
    23
    My brother and I are over 70 and live some way from our 97year old mother. When,in spite of an excellent daily carer and not so good back up agency we had crisis followed by crisis, I employed an Independant social worker to do an assessment. She was brilliant, did an assessment, advice to on ways forward and ongoing support. When I contacted local SS attitude was is she self funding if so they were not interested. Yes it cost but she was on my side and even phoned me when mum was in hospital to see how the discharge was going. Actually the hospital were able to get my mum in my choice of home which as others have said was small and homely and the food smelled good.
    This forum plus our social worker gave me the knowledge to set the agenda for my mothers care. It's good that you and your siblings are all in agreement so often families are not.
     
  14. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    1,047
    If you don't have POA, your only option is the deputyship route. There will come a point when your mother won't be able to manage her finances, if that isn't already in fact here. My mother-in-law would never have agreed to POA if presented as a direct question.

    My mother-in-law wanted to be seen as the same as everyone else, so I asked a neighbour to visit her and gradually drop into the conversation about POA being something she was doing. My husband and I were already setting up power of attorney for ourselves and we let my mother-in-law know this. The neighbour "groomed "her over a number of weeks and eventually she signed the papers. I'm not suggesting that this will work with your mum in exactly the same way ,what I'm saying is you have to think outside the box, and be devious and manipulative with this illness
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,713
    Female
    South coast
    My mum would not give me POA either as she thought I was stealing from her.
    She would not accept carers either
    Eventually we had to wait for a crisis before she got the support she needed. In mums case it was a TIA which landed her in hospital severely dehydrated and malnourished. She went from hospital to her care home and stayed there. She had fought tooth and nail against going there (she wanted me to care for her full time, but I couldnt do it), but once she settled she was actually happy there.

    PS - I had to go for deputyship eventually
     
  16. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,782
    Female
    The reason she won’t go out to lunch clubs, or make friends, or accept help from anyone but family (or even understand that she needs more help) is all an effect of the dementia. She wants to stay with all that is familiar. She probably wouldn’t remember to attend events anyway. At mid stage my mother lost her sense of time and no amount of writing on calendars helped, she had to be prompted immediately beforehand.

    I agree with others who have said she is past extra-care. She has already said she won't move there, and if she is disruptive (and it sounds as if she would be) they won't accept her anyway. She needs a lot of supervision which either means someone with her most of the time, or a care home.

    However because you don’t have POA and have no access to her finances there is nothing you can do without her agreement. You can call SS again but if she refuses help, they will just leave her to it. You have to wait until the situation deteriorates to the extent that SS agree she has no capacity and is at risk, and you can then take out a deputyship and get her the care she needs. The crisis often happens when the person has a fall or other accident and ends up in hospital. Unfortunately you will have to wait for that stage.
     
  17. Greens

    Greens Registered User

    Apr 29, 2018
    12
    Once again, thank you for your replies. I hadn't heard of a Deputyship so I have just looked this up and will share the information with my brothers. I really don't want something to happen to mum before we get someone to listen and to help her, which is why I contacted Adult Social Care (to no avail), the CPN and the GP. The GP spent over an hour meeting with my Mum, myself and my brothers but sadly mum of course can't remember the discussion. He seems to have taken our concerns seriously about her anxiety and that she alledges she got into a strangers car. I really do appreciate you all sharing your experiences and knowledge as it does help.
     
  18. Valpiana

    Valpiana Registered User

    Sep 16, 2019
    19
    My husband has moderate dementia,he is still able to go out alone locally and goes walking every day.I work as a childminder but go out with the children . He has a phone with a tracker so I can see where he is. 99% of the time he has no trouble navigating his way home. The other 1% of the time he asks directions and people usually insist on driving him home even if he just needs pointing in the right direction. Sometimes he asks a couple and he tells me they usually end up arguing about which is the right way so he is no better off.:D We live in a small town so most people are kind and helpful, I try not to worry. Of course I am at home to make sure he has his tracker on him first thing in the morning.
    My friend recently purchased an alert system for her Mum. She wears it round her neck and it is capable of detecting falls. No idea of the company but I am sure you can find out online.
     
  19. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    318
    Can I ask please
    How difficult is it to get deputyship?
     
  20. canary

    canary Registered User

    Feb 25, 2014
    10,713
    Female
    South coast
    There is a lot of form filling and paper pushing, but I found it doable. It takes time, though as there are various steps to go through. I think it usually takes about 6-9 months. Mums was quite straightforward because no-one in the family objected and I didnt have to attend the hearing - it was pretty much rubber stamped (this is the usual outcome)
     

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