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Daughter concerned about her mother

Discussion in 'Memory concerns and seeking a diagnosis' started by stuckinmiddle, Jan 2, 2016.

  1. stuckinmiddle

    stuckinmiddle Registered User

    Jan 2, 2016
    2
    Essex
    Hello,

    I've just signed up here hoping for some advice about the current situation with my mother. I apologise in advance for the length of this post :eek:

    My mother is in her mid 60's and has Parkinsons' Disease as well as arthritis. My father (also mid-60's) is her carer. Over the past year or two her memory has been getting slowly but surely worse and she has lost interest in all of her hobbies and won't try anything else that's suggested to her (she's always been as stubborn as a mule and will find a reason why she won't do this or that). She became unable to concentrate on balancing her books (which she has always kept) and has struggled with money management, to the point where she is barely interested in the financial goings on of the house which is very unlike her. She started to have difficulty processing complex sentences during conversations, would say sentences and forget what she was saying mid-sentence then blaming whoever she was talking to for it. She became unable to follow the plots in her beloved soaps on TV. She would find excuses for all this (blaming her meds, her PD or other people) and blow off the suggestion that anything was wrong.

    Then in May last year (2015) things took a dramatic turn for the worse when an infected leg ulcer landed her in hospital. First she lost the ability to walk and then stand (she had been walking albeit poorly with a zimmer frame prior to this), I don't imagine her weight helped with this (she is rather large).

    She had hallucinations at times before this happened, and would always know that they were not real, but after being moved to a rehab ward, they got worse and she was convinced they were real. She also started to forget conversations she'd had minutes earlier, forget we had visited, forget she had eaten, forget where she was, forget she'd had physio. The delusions started to creep in slowly around that time too, becoming convinced her and my father were divorced and we (myself, my father and my brother) had all abandoned her, despite the fact my father and I were visiting multiple times a week and my parents are very much not divorced. She has also become doubly incontinent. They changed my mothers meds to try and take away those which could be causing the hallucinations but nothing worked. Around this time a consultant, who had a lot of experience with PD, suggested she was showing strong signs of developing Parkinsons' Disease Dementia.

    Since our house (I live with my parents) had to be completely reorganised downstairs to allow for her new hospital bed and hoist, she had to temporarily stay in a care home after showing no real progress with physio, since she would scream and cry when they tried to get her to stand or take a step. She seemed to feel safe in the care home but her hallucinations remained.

    In November she finally came home. Except the woman who returned is not the mother who left. She is no longer the same person. She has never settled since she has returned, and claims she has never lived in this house before now (we moved here 7 years ago). Carers come in to change her pads/nightdress etc. 4 times a day. She refuses to get into hoists, claiming she had an accident in one but we have no way of knowing if that's true or a hallucination, rendering her bedbound. She thinks she has been away from home for 2 years and that my brother has 2 children with his girlfriend, neither of which is true. She struggles to recognise me at times, and has spoken about me as if there were two of me (and has also hallucinated me in the room with her, seemingly at various ages - once I overheard her talking as if I were a badly behaved child, and the second time she was talking to my father and saying I had short hair and was in the room with them and I've only ever had short hair when I was 15). She thought there was 2 of my father yesterday. She still had lucid periods on and off, sometimes a few hours or even a whole morning but then she's off again.

    3/4 weeks ago her hallucinations worsened so badly a UTI was suspected (which would have made it her 4th in a year) but testing proved that assumption false. Unfortunately, the memory clinic was coming to do an assessment around that time and decided to reschedule due to the suspected UTI and we haven't had another appointment. The hallucinations have started to frighten her so badly she's inconsolable (convinced dead people have come to get her or that she's falling out of bed or standing on the edge of the bed). Also my mother seems to be able to seem incredibly lucid whenever medical professionals turn up that she's mostly able to cover up how bad she is. But she always has these little tells that they don't pick up on (like staring at the corner of the room where this man she hallucinates almost constantly stands). She now hallucinates 80% of the time at least.

    Unfortunately professional opinions are split. Some think she has a form of dementia, some think its just the hallucinations (and attention seeking) and if put on anti psychotics, they'll go away and everything will be fine and dandy. My gut instinct is something else is going on beyond the hallucinations. The medical professionals who have known her longer are noticing the problem much more that the new ones are.

    The other problem is that my father is finding it increasingly difficult to cope. He has a health problem whereby he can go into anaphylactic shock at any time and one of the triggers for it is stress, so the stress of all this could literally kill him. Multiple people have suggested my mother go into respite but when she was asked about it by one of the professionals, she point blank refused to go and as she's considered to have mental capacity, there's nothing else to be done about it. She also said she won't go into a home, and won't go to hospital for any treatment for anything. I believe this is partly due to her absolutely hating being moved at all. After the professionals who mentioned care homes left, my mother became furious with my father for trying to "get rid of her" and my father pointed out that she didn't recognise this house, she then said that "it wasn't her home but it was the only place she's got".

    It's very distressing to see my mother like this, and also the knock on effect its having on my father. I'm unclear on what happens next, or what we do now.
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,765
    Merseyside
    Welcome to TP :)
    What a nightmare you're having.

    I would chase the memory clinic first thing Monday as your first port of call. Insist they come out ASAP.
     
  3. Dayperson

    Dayperson Registered User

    Feb 18, 2015
    275
    Female
    Shropshire
    #3 Dayperson, Jan 2, 2016
    Last edited: Jan 3, 2016
    I feel your pain

    Hi stuckinmiddle, I really feel for you because my mum is in a similar boat. I have watched her deteroriation the past year and she has lost interest in cross stitch, will talk over TV and ask questions about soap plots etc. She has high blood pressure and varicous excema which has seen her hospitalised a few times. She has been told to keep her legs up and wear a supportive bandage to stop the water building up in her legs and her leg getting infected but she refuses to wear the bandage but at least will get her legs up if not all the time. Last year she was given antibiotics multiple times for her leg infections. I am worried that eventually she may end up paralysed like your mum is.

    As for hallucinations, she is convinced that people on the TV can see her and she talks to them and she thinks I don't live with her when I do all the time.

    My mum is large too, not helped by the fact she's had fibroids since she had me and two hernia operations. I sometimes wonder whether if she'd listened to the doctors telling her to loose weight years ago, this could have all been avoided.

    What is your mum like on eating, does she eat healthily? Mine does but she will have a paddy in the supermarket if she can't buy 3 packets of crisps and sometimes I see her eat as much as dad. I don't know if this part of her dementia or depression but you can't tell her to eat less for her own good.

    My mum has a lot of denial, she will never admit anything and blame not doing something on being too busy (I know she's not been busy). She will argue black is white and its hard for my dad and I to just let it go over our heads sometimes but we need to.

    It's so hard to see someone you love suffer like that when she is completely oblivious to it and its affects on others. I too am worried for my health and my dads health because he has a firery temper at times and it's only a matter of time before one of us has a stroke or heart attack or my epilepsy could return.
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,426
    Yorkshire
    hello stuckinmiddle
    welcome to TP - so glad you've found us and had a chance to write down all your concerns
    Quite honestly, I'm at a loss as to how to reply - except with much sympathy

    your poor mum needs so much support and your poor dad has his own needs - so that explains your alias!

    Cat27 is right - get the memory clinic back ASAP, if for nothing else to get some back up - please just print out your post and show it to the consultant, maybe send it to them before the appointment so they are already in the picture

    do you have Power of Attorney for your parents? if not do your best to get those in place, might as well use the fact that SS believe she has capacity!

    your mum may not upfront say yes to the question Do you want to go into respite care? - but there's nothing stopping you being a little economical with the truth and getting her somewhere with a bit of slight of hand

    or maybe switch it around - you are so worried about your dad, would he agree to a break and have respite care for himself?

    personally, I really don't see how it is viable to have your mum cared for in your home - you do say "She seemed to feel safe in the care home" and she doesn't recognise her own home. I don't know your circumstances, but is a permanent care home placement a possibility? Your dad's needs carry equal weight. If she will be self funding, the choice is yours, especially if you and/or your dad have POA.

    has she started taking the anti-psychotic meds? maybe they will help her

    I feel I'm clutching at straws for you - and also feel that SS have backed off to let you get on with the situation (though in many ways their hands are tied if they truly consider your mum has capacity!?) - but I doubt I'd be able to cope

    I think I come back to what Cat27 said - start making a nuisance of yourself to GP, SS and anyone else involved in your mum's care AND your dad's - and actually in your own, maybe see your own GP and explain the effect of all this on you

    I wish you strength to fight these battles
    keep us updated - posting here may not solve everything, but we will listen
     
  5. stuckinmiddle

    stuckinmiddle Registered User

    Jan 2, 2016
    2
    Essex
    #5 stuckinmiddle, Jan 6, 2016
    Last edited: Jan 6, 2016
    Thanks for the replies :)

    Cat27 - My Dad has mentioned to the dementia crisis care team that there hasn't been another appointment made yet by the memory clinic and they said they'd chase them up, so hopefully that will get sorted soon.

    Dayperson - Sorry to hear about your mum. I can relate to having a mother who doesn't listen to medical advice (she was told to keep her legs up for her ulcer but wouldn't do so because it hurt). I think the main thing that lead to my mum being this way, other than her stubbornness and illnesses, was the fact when she was originally taken into hospital she was left in bed for 5 days before they even attempted physio with her.

    My mum thinks all the actors in one soap are also in the other, and that people in real life are also characters on the TV. Sometimes I wonder if the TV makes her worse.

    My mum would literally eat everything in the kitchen if she could get up and walk into it, she's always had a large appetite but it’s ridiculous now. She has also developed a liking for cakes and desserts even more so than before, and operates regarding food very much on whim; we can't pluck pies etc. that we don't have in the house out of thin air (much to her annoyance).

    My mum has always been stubborn regarding her opinions so it's not exactly new to us, but there's no reasoning with her at all now.

    Sorry to hear about yours and your fathers health problems too.

    Shedrech - I was going to go with stuckinthemiddle but it was too many letters! I think this is close enough :)

    My dad was in the middle of arranging LPAs just before my mum went into hospital, we held off when she worsened as we were unclear about whether she had capacity or not, but are going to get them sorted out now (the forms have just changed I think so we need to redo them anyway). My dad is going to be on my mum's, and I will be on my dad's. They rely on me emotionally very heavily (my mother has done since I was a teenager) and I'm reluctant to take on the practical side of things too as I'm already somewhat bogged down with responsibility (and guilt).

    The biggest problem with that is she is reluctant to be moved at all (out of the bed or out of the house) and reacts to the possibility with a great deal of fear and anxiety. I'm not sure how we get past that. It has been suggested that my dad go on holiday instead (which he would love to do) but we had a meeting with social services and dementia care team today and they made it clear that we have to arrange, provide and pay for care for her in-between the carers' visits if we were to go away anywhere ourselves, despite the fact my parents are not self-funding as they have no savings left. And honestly, I don't think I could cope with her alone if I had to stay behind (she calls for my dad all the time and gets mad that he's not in the room with her constantly).

    They have started her on quetiapine (about 3 nights ago). She seems a bit less distressed by her hallucinations but they're still very much present. They are still flip-flopping on the issue of whether she has dementia or not.

    Social services honestly just don't seem to care about our needs at all; all they offered was for the carers to take on giving my mum her medication and preparing her breakfast/lunch and microwaving a dinner because apparently that will make everything easier. Also its caused my mum to basically have a tantrum at my dad for not asking her if it was ok if he didn't do her food anymore and how she can't have whatever she wants for dinner whenever she wants it and how it's about HER so it should be her choice what he does.

    I do feel that we have just been abandoned by social services to sink or swim because it is cheaper to keep my mum in her own home (they keep turning it round onto us, saying how much she wants to be with her family and how much happier she is at home - I don't know what woman they're talking to but it’s not the one we're dealing with). They also keep going on about how bored (we have suggested so many things for her to do but she's never interested) and lonely (she's always been the sort of person who could have company 24/7 and it still would not be enough) she is. It's not so easy to occupy her by talking to her, I tried to do so yesterday and she literally looked right through me :( They are going to get an OT to come in to see if they can find something for her to do to keep her occupied.

    I am going to have to visit my GP anyway (I have a severe vitamin D deficiency that still doesn't seem to have gone away after round 2 of taking pills - the symptoms are back again) so I will mention how it's affecting me then. I have a panic/anxiety disorder that I've had since I had some kind of mental/nervous breakdown years back in my early 20's. I also suffered with agoraphobia badly at the same time, and although I'm well enough now to work, it's still a condition I'm slowly still chipping away at. I really don't want the stress of all this to destroy something I've worked 10 years for, but my anxiety levels are bad at the moment and I'm barely sleeping. It also doesn't help that I got made redundant just before Christmas and I am trying to find a new job with all this going on (being unemployed seems to make social services view me as a replacement for my dad if he stops being able to cope which doesn't help).
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I think you need to request a carers assessment from social services - in fact 2 separate carers assessments - you do this by phoning the adult social care duty desk and telling them that is what you need - 2. They are completely ignoring both of your needs from what you have said and by law under the new Carers Act you do have rights. Start of by asking for the carers assessments and see what they say

    Neither you nor your dad can continue in this way without a break xx
     

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