New here - looking for advice and suggestions

Discussion in 'I care for a person with dementia' started by sinkhole, Jan 28, 2015.

  1. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    Hi Everyone, I've been lurking here a few months since finding out my Aunt has dementia. I've found this forum very useful and educational so first of all I'd like to say thanks to you all for sharing your experiences and knowledge.

    I'll try not to make my first post too long, but here's my situation in a nutshell:

    In my immediate family there's just me, my mother (89) and my aunt (86). They both live on their own in their own houses in South London, about 45 minutes away from each other and 1 1/2 hours away from me. They have always been very independent and have been happy living their own lives and doing their own thing.

    Last year, my aunt was admitted to hospital after a fall and during that stay they must have realised all was not well and so carried out a head CT scan, MMSE and referred her to the memory clinic for an assessment. To cut a long story short, the MC appointment didn't happen due to an admin error so I took her to the GP and we got another one booked in which happened a few weeks ago.

    I've been speaking to SS, her GP and the Community Nurse she saw at the MC and they all offer help but she refuses it all claiming there's nothing wrong and she can look after herself. The last visit I made with the Nurse ended up with us on the doorstep and her refusing to let him in do an assessment of her living conditions and refusing all offers of help.

    My aunt's house is in a very poor condition and full of clutter. There's no central heating, hot water or working telephone line because as faults have occurred she just refuses to let anyone in the house to fix them (even by me). The obvious way forward (to me at least) is for her to move into my mother's house, where there is plenty of room and a much nicer environment and they can essentially look after each other until we need to organise home help or care. My mother agrees to this but getting her sister to is proving difficult.

    Her excuse is always that she has "so much to do at home" she can't possibly move out. What she does there all day is beyond me and it just seems to be a tactic to avoid the subject. I can understand this as it's a big change that's likely to be difficult to come to terms with, but it's going to be the best way to get her to a safe environment and care for her if she won't let anyone in her house.

    Does anyone have any advice as to the best way to tackle this and how we might convince her this is for the best?

    Thanks
     
  2. joggyb

    joggyb Registered User

    Dec 1, 2014
    119
    If you think the way forward is for your aunt to come and live with you, might it be an idea to try, say, asking her to come over for lunch or dinner... and then seeing if she'd like to stay the night? And take it from there?
     
  3. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    The idea is for her to live in my mum's house and she already goes over there twice a week, usually on a Thursday & Friday but won't even stay there on the Thursday night preferring to spend 45 mins on a bus there and back.

    The thing is she seems enjoy being at mum's when she is there as she's waited on hand and foot and given proper food to eat, but trying to get her to stay there, even for a night or two, is met with excuses as to why she has to get back home to her cold, damp, dusty, cluttered house.
     
  4. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,856
    England
    Do you think your aunt is a hoarder? She may believe that her house is full of 'precious things' and is afraid that if she lets anyone in then they will damage/steal/discard some of her belongings. To a hoarder there is no such thing as rubbish. They enjoy spending time in someone else's clean tidy home but cannot let go of their hoard in order to improve their own living environment. They are ashamed, depressed and unable to make changes without expert help. When you described how she wouldn't allow you over the threshold that said 'hoarder' to me.

    A hoarder's home can make them ill due to poor food storage and preparation facilities, malnutrition and dehydration, hypothermia, and exposure to pathogens such as airborne mould which cause respiratory problems. Not to mention the trip hazards and fire risk. I'm not telling you anything you don't already know. :(

    How does your aunt respond to your mum talking about making the move? What is their sibling relationship like? Your aunt is the younger sister and may be worried that she will be treated like a child if she lives with your mum. Issues of kitchen dominance, food preferences and daily routines loom large once you are living under the same roof.

    Is she comfortably off financially? If not then the financial savings of cohabiting might appeal to your aunt. Please make sure you've explored their legal position. Who owns what house, whether your aunt will pay for her keep and household maintenance, etc. At the moment you want her to be clean and safe but there are longer-term issues about resources, including getting Power of Attorney for them both in anticipation that they will need help in managing their affairs. I would imagine that your aunt will treat the idea of POA with great suspicion. :rolleyes:

    My crystal ball says auntie will have a fall or get ill, go to hospital, and from there a professional assessment of her care needs will be easier to achieve. When people are fiercely independent and private it is often impossible to help them avoid a crisis in their circumstances. :(
     
  5. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    Hi Katrine, you've raised some very good points there. I would say there are definite signs of hoarding, but it's difficult to know how attached she is to all the stuff in her house now she has dementia. To a certain extent, my mum shows signs of hoarding in her house but I've been able to discuss it with her and help her rationalise the situation to the point where she'd even started asking me to remove some of the old junk she's collected over the years.

    It's just not possible to even begin that sort of conversation with my aunt because she'll just ramble nonsensically. But, on balance, you could be right that she sees some of her stuff as a tie to the house. We've offered to bring it over to my mum's house if she moves in but it doesn't seem to make any difference.

    The relationship between them has never been really close. They are very different characters in many ways and they seem to able to rub each other up the wrong way very easily. However, now my mum is aware of dementia and how it is affecting her sister, I feel she's become more sympathetic towards her and her situation and I do see more warmth between them now. A few months ago I don't think she would have entertained the idea of them living together, but now I think my mum sees it as a way of avoiding outside care becoming involved as neither of them want outside help of any kind.

    Financially, my aunt isn't bothered about how much money she has and how it's being spent. They have both mis-managed their finances for a while now but when I started seeing warning signs of this last year, I stepped in and secured everything and also got Lasting Power of Attorneys in place for both of them. They've managed to lose big chunks of money along the way, but there is still some left to pay for future care and I'm now protecting it. I don't want money to become a worry for either of them and I think this is probably not an issue for the time being.

    My fear is the same as your crystal ball and although I've tried to do what I can to minimise the risks, there's only so much I can do without forcing things on her against her will. It seems that as long as she is deemed to have mental capacity she is free to carry on as she has been. I'm just constantly trying to think of ways we can persuade her to move into mum's before something really bad happens.
     
  6. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    I think the idea of the two living together would work, but only without dementia in the equation.
    You only have to read some of the posts on here to understand that coping with a parent/spouse who one is very familiar with is extremely hard. In view of your mum's age I personally feel it would be expecting far too much of her. Seeing her sister for two days in no way prepares her for 24/7 living with dementia.
    I don't wish to upset you in any way, but I feel strongly enough to post my concerns.
     
  7. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    Hi Sleepless, I do appreciate it could get much more difficult for mum, but I also see it as the only potential way to get my aunt in a safer environment and to introduce the concept of outside care to both of them.

    My mum won't agree to any outside help (apart from me) now but she does admit she would need someone to do some of the housework if sis moved in. My view is that we can then gradually get both of them comfortable with visiting helpers and then transition them to carers over time.

    We all want to avoid care homes as long as possible. My mum has a big house with plenty of spare room. We have enough spare money to spend some on the house now to make it more suitable for them both and pay for visiting care. If their physical health stays the same as it is now, I do believe this is the only option they will accept and at least it would be a big step forward from where we are now.
     
  8. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,856
    England
    If it's a big house then presumably you plan for your aunt to have private living space. I think she and your mum will rub each other up the wrong way if they are forced to cohabit too closely.

    The other big plus of a large house is that you could consider having a live-in carer at a later stage, or perhaps at times when you are on holiday and not available to support them in person. This is not cheap, but it is cheaper than residential care for both of them.

    You have made a good start with the LPAs. In anticipation of your aunt potentially moving in with your mum, think about the 'bed and board' financial implications and who is going to pay for improvement works. You should seek legal advice on getting a properly witnessed legal agreement if auntie is going to contribute financially.

    Since you have LPA for both of them there is potentially a conflict of interest for you in managing and maximising their individual assets if these are to be 'merged' in any way. For example, if your mum died, auntie could be deemed to have acquired a beneficial interest in your mum's house because she had paid for some of the renovation work. I have no doubt you can achieve the right balance but for peace of mind and to avoid any future issues you should get advice about the options. There is an organisation called 'Solicitors for the Elderly' that can put you in touch with solicitors who specialise in this area of law.

    P.S. As someone married to a reformed hoarder, I had to smile when you said your mum had started to ask for help in de-cluttering. From my own experience, there can be a light bulb moment when the hoarder (or collector as they call themselves) sees that the 'stuff' is dragging them down. From then on they can be even more ruthless about chucking it away than the person who has been tiptoeing around the issue for years by suggesting gentle pruning and tidying, and being shouted at if any part of the hoard is threatened in any way! :D
     
  9. RobinH

    RobinH Registered User

    Apr 9, 2012
    266
    London
    Hi Sinkhole

    This does seem a difficult situation. Your preferred solution might make a lot of sense and look neat, but if one or both are reluctant now or in future, it's doomed. The Aunt with dementia is the key - her needs, attitude and personality may change over time. Worst case she has a health crisis, and after hospital care they won't want to send her home to a dangerous house. By then it might be too late for her to move in with your mum, so she will end up going straight into a care or nursing home.

    Do you know, objectively, how bad her house is? When were you last inside? If it possible to have a look when she is at your mum's? If it's uninhabitable, get evidence and be prepared to use it to safeguard her - otherwise a trip, fire or hypothermia could be the result.

    Be prepared for the possibility that them living together will never happen, and possibly wouldn't work if you tried it. After all, when 2 old people look after each other, it all falls apart when the more able one gets ill, requiring emergency measures.
     
  10. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,161
    The attitude of your aunt and her particular idiosyncrasies are very similar to those my father, who lives abroad, displayed. I was told by dementia experts here in Cambridge, where I live, that I had to wait for matters to come to a crisis, and sure enough, they did. He landed himself in hospital and hospital won't release him home. It's horrible while waiting for the crisis to materialise but just tell yourself that if she continues to refuse to move then you have done your best and that the situation will resolve itself to her benefit at some point or other. My thoughts are with you.
     
  11. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    This is exactly what I'm afraid of happening and it's why I feel we may have a window of opportunity while her dementia is still in the early stages to convince her this will be the best move. But as she refuses to accept anything is wrong with her, we keep meeting the same dead-end.

    Yes, I've been in her house. She has recently started letting me into the hall but keeps me away from the areas I think she is ashamed of (kitchen, bathroom, living room). I have been in while she was at mum's because I needed to know if she was in immediate danger and it's pretty bad, but I'm well aware there will be worse out there. It's not a healthy environment whichever way you look at it.

    I took photos and showed them to the community nurse, but he didn't give me the impression it was so bad they would do anything to force her out, so that's where it's been left for now.

    I'm probably not going to find an answer to all of this in the short term, but I just want to try all avenues and get as much advice as I can so at least if something bad does happen, I don't feel I didn't try my best to help. I'm sure a lot of you here have battled with the same feelings!
     
  12. joggyb

    joggyb Registered User

    Dec 1, 2014
    119
    As others have said, having your aunt live with your mother might seem like a good solution, but in practice might be much less so.

    For example, your aunt might be a night wanderer or get up several times in the night and do all sorts of seemingly strange things. This would be enormously disruptive and difficult for your mother, even if you provide care(rs).

    My family found out just how bad my father had become through my uncle going to stay with him for a couple of nights or so every few weeks for about 5 or 6 months. A great deal became apparent as a result of my uncle's visits that we just wouldn't have known about otherwise.

    So - you do need to fully appraise the situation first, for all your sakes. What might be good for your aunt might not be good for your mother, and vice versa. It seems to me from what you've said that they probably have very different needs.
     
  13. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    It's by no means the perfect solution but I keep coming back to the conclusion that it's better than the current situation where myself and my mum are constantly worried about what might happen to her if she was to have an accident or become ill just be living the way she is.

    If the answer is to wait until the inevitable happens and she ends up in hospital, then OK I can rationalise that but I want to make sure I've explored all other options first.
     
  14. Sweet

    Sweet Registered User

    Jun 16, 2014
    72
    Hi there
    My mum was one of 5 sisters, the oldest is 94, very independent in own home, my mum was 92 in sheltered accommodation, (eventually a CH) her 2 sisters 90 and 88 in the same sheltered accommodation ( own flats) youngest 84 independent in own home.

    They would have absolutely hated to live with each other in the same house, tho they are friends and really happy in each other's company, meeting up all the time, but Very very different than living together!

    So you may end up with 2 very miserable people although it seems such a great solution.

    Also My mum developed dementia, eventually went in to a CH, the others would never have coped with it, it would have been beyond them. They accepted they had to visit her in the CH.. She died last Friday, dementia doesn't improve, it would have been impossible for my aunties to help her as the dementia progressed.

    Maybe what we class as clutter and not satisfactory is OK with your aunt.
    Hope things work out, hard for you keeping a watch on both of them
    Xx
     
  15. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    One thing I do know is that I'm unlikely to convince either of them to do something they don't want to.

    I've been with them both today and yes, I can see how things could go bad with them living together.

    I'm beginning to feel like maybe I'm trying too hard to fix a situation which can never be fixed. I certainly don't want to force them into a situation which make them both less happy than they are now. It's just so frustrating and sad to watch the decline and not be able to stop it happening.
     
  16. canary

    canary Registered User

    Feb 25, 2014
    9,296
    Female
    South coast
    I think that just about sums it all up :(
     
  17. Solihull

    Solihull Registered User

    Oct 2, 2014
    97
    West Midlands
    Hi Sinkhole, I think you have done as much as you can. If they move in together and it goes wrong, you will blame yourself again. My mum would not listen to me, stopped eating, drinking, washing & cleaning. I was continually on edge & eventually got the phone call from a friend that she had fallen yet again. Fortunately she was not badly hurt but the stay in hospital alerted everyone to the fact that she needed 24 hour care and is now in a lovely care home. Living at risk is bad enough for one person but imagine two elderly people at risk (for various reasons) living together- sleeplessness, forgetfulness & carelessness. I hope this does not sound hard but you obviously love them both, perhaps you could talk to your GP for avice. I wish you the best.
    Sue
     
  18. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    Hi Sue, what you say doesn't sound hard. I know it's going to be difficult however the situation develops and I take on board what people here are saying about them living in the same house leading to more or different problems.

    I'm an only child and our family has always been very small, so I haven't really had to deal with many difficult family situations until now. The advice here is very valuable to me and something not readily available from the NHS going by by experiences to date.

    After dealing with both my mum's and aunt's GP, I don't have a lot of confidence in them. Social Services have been good but I'm feeling they've got as far as they can because my aunt refuses their offers of help and assessments.

    The last time she was in hospital, they offered care packages which she refused and as she was in the early stages of dementia, they were happy to let her go back home and I had to chase the GP, memory clinic and SS to get any action.

    I don't know what would happen if she ended up in hospital again, but it seems to me that as long as she can score at least 19 on the MMSE and tells them she is happy looking after herself, she'll be allowed to go home again.

    What are the criteria the hospitals use to decide if a dementia patient will be kept in or transferred to a care home? You say that your mum's stay alerted everyone but did your mum have to agree to go into the CH or was that something the hospital just did and she went along with it?
     
  19. RobinH

    RobinH Registered User

    Apr 9, 2012
    266
    London
    Discharge

    Hi

    Once a person is admitted to hospital, the hospital have a duty of care. If the person is medically ready to discharge, the hospital has to satisfy itself that they are going to a safe place. It doesn't sound like that would/should happen in this case. It could push Social Services into action. It's crazy that something bad has to happen before anyone does anything, but you will read that here time and time again. The MMSE score isn't relevant to the discharge - it's a matter of is she safe.
     
  20. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    Last time she told the hospital she was going to stay at my mum's house "for some time" and i think that led to them thinking she would be safe. In fact, she went home on the bus after staying at mum's one night :rolleyes:

    Maybe next time (I'm resigned to the fact it will happen again), SS will be involved and they can have some input based on what I've been able to show them of her house and living conditions?
     

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