Here seems a good place I can talk about it

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

  1. ClaireUK

    ClaireUK Registered User

    Apr 17, 2014
    7
    My mother in law was officially diagnosed with vascular dementia in 2011, but I recall going back to 2009 she had it then. She lives with my father in law. There are 2 major things that are so hard to deal with for us. 1) She doesn't acknowledge there's anything wrong with her. 2) The way my father in law is coping (or not).

    We aren't allowed to even talk about it in front of her as she will go beserk. The only way we can talk about it with my father in law is if she wanders out of the room, or via email. I think my father in law is scared of her reactions. All of her life she has been (as my husband would describe) "a bit awkward" and is a "a fussy eater", so the dementia has only made it so much worse. My father in law needs to deal with it openly, but he won't. They will at some point need help, so I don't know how this will happen. It is her birthday tomorrow, and as predicted (it happens alot), my father in law has phoned to cancel us all going out for a carvery, saying she is refusing to go. (this happens all the time, and she was even refusing to come to our wedding last year). My father in law dreads getting a letter in the post from the hospital, as she goes beserk (it's even worse when she sees the word "psychiatrist" on the letter. She has had 2 assessments (the last one being in December), she goes along with it in front of the doctors, but gives my father in law an incredibly hard time about it away from everyone else. She eats very little, and my husband notices she jerks her head forward as if she's struggling to swallow food. She refuses to bathe. I have advised my father in law to just run a bath for her, but he always opts for the path of least resistance. He has found a solution to her not changing her clothes for weeks, by just taking them away at night and putting fresh ones out. She started putting her dirty underwear on the radiator instead of in the washing basket, but I think he has now sorted this by making the washing basket more available to where she gets ready for bed. The doctors were suggesting sending someone to their house, but my father in law refused, saying she would go beserk, and would probably not even let them in. Her memory of childhood is so vivid, but her recent memory is so poor. Things that she deems negative though in some way stay in her mind. I just don't know what is going to happen. At some point she will become incontinent etc, and at what point will we be allowed to talk openly and get help.

    Sorry that is long winded, but other than my husband you are the first people I have said all of thiis to. If anyone can relate to this, or have any advice or tips, I would be eternally grateful.

    Thanks for listening x
     
  2. Caroleca

    Caroleca Registered User

    Jan 11, 2014
    332
    Ontario canada
    It sounds like a repeat of my mom and dad. The difference is, when they refused to go to my sons wedding...I was not aware of the dementia...I still can't believe I was so nieve.....but dad did a great job of hiding it. It is so very very sad. Mom has been in a CH now for a year and dad spends everyday...all day there. We could never talk about it...mom was so skinny and was calling the ambulance or siblings saying she didn't recognize the man in her house. (It was my father). She refused anyone coming in and he went along with it...eventually after a few hospital visits, dad agreed to the CH.

    Your dad will eventually need help...and that is the sad part...because my dad is still afraid of moms reaction to everything and it's like he thinks she will get better (at least somewhere in his mind).

    I'm sure someone will be along soon to give you some advice. TP is wonderful and very supportive...you have come to the right place.
    Carole
     
  3. Isobel19660

    Isobel19660 Registered User

    Feb 5, 2015
    17
    Hi, I can definitely relate to these comments especially the bit about dementia patient reaction to letters Etc.

    My mum often throws a tantrum almost when a letter arrives from memory clinic . She will slam doors, throw things and basically make my dads life hell for some time. Recently after applying for attendance allowance they received a couple of phone calls about it and a visit which basically for my dad meant a hell of a week !

    As a family we are just skimming around the diagnosis so she doesn't throw another tantrum . I am sure there is so much more that goes on behind closed doors that my dad doesn't tell us.
    I have been in contact with local Alzheimer's society who have suggested a home visit but I don't think she will be agreeable at the moment but they have kindly offered to just visit me at home for a chat so maybe you could contact your local group.

    Good luck
     
  4. Liz57

    Liz57 Registered User

    Dec 22, 2013
    184
    My mum has Alzheimers but she too reacts badly to unexpected letters or phone calls. I've come to the conclusion it's fear but that's a difficult one to deal with if there's no one openly discussing things.

    I received an absolutely frantic phone call (actually, a series of phone calls) this afternoon with mum almost psychotic. She'd had a call from the hospital with an appointment. She was frightened she'd forget what was said and when she couldn't reach me (I was at work) it all went downhill. It's taken me two hours to settle her again, and I'm cross with the hospital for telephoning her rather than me.

    I've found staying calm but firm works and I tell her to calm down and that I'll sort it out. It probably isn't a tactic to work with everyone but might help someone.

    I guess if I felt so out of control as Mum, I'd be scared witless too.
     
  5. MeganCat

    MeganCat Registered User

    Jan 29, 2013
    356
    South Wales
    That was my mum about 3-4 years ago. She lived alone but would not entertain the idea that anything was wrong. I arranged for social services to come around when I was up at hers visiting, and through a bit of a guilt trip persuaded her to have a carer come in and heat a meal - to stop me worrying.
    you can only do what you can do, when you can, until circumstances allow you to do more. It sounds like your dad has got the clean clothes sorted - can he run a bath and get her in it? Just tell her matter of fact it's bath night, get in. (Mum loved bubbles at CH) often showers can cause visual disturbances apparently and be frightening.
    Could your dad make some excuse that he's finding it hard to cope alone and the support is for him?
    Mum never acknowledged her AD - but was full of anger for the professionals with their stupid tests which she passed easily (not). I recall her screaming down the phone to me one Saturday morning asking me if I was trying to get her sectioned (I was progressing a guardianship application which requires a couple of assessments, and had previously discussed with her) she was so scared and defensive.

    I found dirty underwear in drawers (in the living room and kitchen, not just bedroom) :eek:mums appetite was very small and she lost lots of weight on her own, but developed a sweet tooth and would eat pudding pots, slices of cheese, ham, fruit, etc - finger food the SW called it - things not needing a lot of dexterity to manage.

    I think that was probably the hardest stage, when she had insight into her condition, but wouldn't seek help, and yet still had enough capacity to say no to everything. I was continually worried sick. I empathise xx
     
  6. ClaireUK

    ClaireUK Registered User

    Apr 17, 2014
    7
    Thank you so much for your replies. Not that I wish any of this on anyone, but it is reassuring to know people understand.

    I have offered to help. Ironing, cleaning etc, but Dad said she would hit the roof and just say why is she doing this. I even offered to take the ironing home with me. My husband suggested they get a cleaner, but got the same response. I just wish Dad would find the strength to be firm and decisive (even if it does mean she throws a wobbly).

    You mentioned a sweet tooth, I can relate to this. Mum has trouble eating, but seems to love biscuits and specifically Orange Club bars. Dad even emailed me to say he's worried about how many of them she eats, but I replied, in the grand scheme of things, I think the main thing is she is getting some food inside her full stop. (even if it's not ideal).

    After reading all of this though, I think the main stumbling block is Dad, and him having to bite the bullet and take control (even if it does mean she has the odd tantrum).

    Thanks again everyone.
     
  7. susy

    susy Registered User

    Jul 29, 2013
    806
    North East
    Yes I found my mum is the main stumbling block with my dad. We basically had to wait for a crisis to happen to then be able to get help in for them. My dad was not getting washed and she couldn't manage to get him in the shower. Anyway they now have carers in 3 x a week to do the showers and we help to do the rest and offer support and someone to talk to.
    It's probably not helpful to talk about her condition in front of her. It will only upset her. It's all lies you know. That stupid man said... They don't know what they are talking about, I'm fine. I clean the house top to bottom every week. I bet you have heard something similar??

    Anyway keep posting on here. You will get great advice from brilliant people on here. X
     
  8. Jean001

    Jean001 Registered User

    Jan 21, 2013
    24
    Hi Claire, I totally sympathise - my mum is now in a CH since dad died in April 2013, but she still won't acknowledge that there's anything wrong with her and that everyone is trying to make out she's 'mad'. When I got mum diagnosed in 2012 dad had been saying to me prior to that, that there was something wrong with her but couldn't say it in front of her. It was distressing to him but he didn't want her to go into a CH while he was alive - he just kept asking me what could be done. I felt helpless that I couldn't make her better like he wanted me to.
    Mum also has been awkward all her life - getting her own way with dad all the time, for want of an easy life :-(
    Unfortunately dad would argue with her towards the end - he was just so fed with her and he told me that they would be arguing every day, since her dementia was getting worse. I don't think he could accept that she wasn't the 'same' woman he married and was extremely upset over this.
    Mum is being cared for and washed and is safe in the CH but she keeps on to anyone she talks to that she wants to go home.
    This time she's not getting her own way, she's making my life a misery with her constant moaning at me every time I phone her (I live overseas). I am getting very depressed over this and don't want to phone her. And I miss the mum she once was.
    I think the hardest part from the sounds of what I read, is when they're in the transition stage - they know something is wrong but are bitterly fighting for independence and that she's as 'sane' as the next person but everyone around her knows she's not right, safe, whatever. And it takes it's toll on all around them I'm sorry to say.
    I post on here when I need to sound off and need support from others who know what I'm going though. I have a good partner but I know he is struggling with it too so sometimes I don't want to 'burden' him with it - for want of a better word, so I come on here. It helps to share. xx
     

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