1. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Just to put you in the picture we lost dad in sept 2013 went from being an healthy fit sprightly 84year old who looked after mum doted on her to having the big three and a cardiac arrest in the space of 4 weeks within 9 weeks he passed away we were all devastated mum seemed ok and then in the march strange things started happening she was acting weird turns out to be a uti got that sorted but the strange behaviour carried on she started talking about her mum and dad like they were still here one day there were two boiled eggs on a tray she said they were for her mum and she was talking about dad like he was still here "don't know where your dads gone he's been gone ages I went upstairs and when I came down he'd gone " mum started suffering with her trigeminal neuralgia and they couldn't control the pain so she ended up in hospital for 2weeks and then 5 weeks in nh for rehab she looked fab and seemed to be enjoying the company but every time I went all her clothes were packed up I used to unpack them and the next day all packed again I took her suitcase away the next day packed in black bin sacks she got from the cleaners I'd bought her a new dressing gown and she was telling everyone It was mine and kept trying to give it back to me

    We got mum home home the packing continued and she said people were living in the house with her then asking to go home to the house she lived in with nan and grandad and she kept looking for the little lad that lived there she rang me one night to tell me she was in a different house and needed to give me the number
    I'm now getting phone calls early morning between 2 and 7 telling me everyone's left her and she's on her own
    We got a diagnoses in dec AD why has this happened so quickly we thought it was just grief
     
  2. Dunkers58

    Dunkers58 Registered User

    Nov 9, 2013
    65
    Hampshire
    what a lot you have had to cope with, the shock of losing your Dad so quickly and now your Mum's diagnosis. You said your Dad looked after your Mum, I suspect she was probably displaying some signs of dementia, but because they were together your Dad was able to protect her. Also whe you don't ilve with someone they are often able to cover things up initially. Now she has had two big events in her life, being widowed and having to spend time in hospital the dementia has become more evident.
    My Mums was highlighted after she had a spell in hospital after a fracture, but now with hindsight I can see there were some tell tale signs at least 2 years before.
    I am sure others will come along with similar experiences.
    Take care.
     
  3. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    I think you might be right about dad protecting her he wrapped her in cotton wool but I now recall dad sometimes saying mum had face on with him and he didn't know what he had done and had been nasty to him for no reason and sometimes in conversations dad would be telling us something and mum would say you didn't tell me that and dad would say he had poor dad he wouldn't have thought about dementia after all he didn't know he'd had an heart attack just thought he'd pulled a muscle a heart attack to dad was clutch your chest drop to floor drove himself to hospital Sunday morning was told the heart attack had happened between wed and fri!!!!! Maybe we should be educating our elderly relatives in what to look for ,we couldn't have helped dad but we might have been able to save. A bit of mum for a bit longer thanks for replying things are making more sense now
     
  4. Tin

    Tin Registered User

    May 18, 2014
    4,815
    UK
    My mum was diagnosed in April 2014 with Moderate Vascular Dementia, but we knew at least a year before that it was Dementia, mood swings, terrible arguments with my sister for no reason and some wandering around the street she used to live in. Its strange because when you get the diagnosis you think that's the beginning.
     
  5. opaline

    opaline Registered User

    Nov 13, 2014
    182
    Hi, Anniebell, my mum also has AD, diagnosed after a fall by hospital, and has had trigeminal neuralgia for at least 30 years. It was always controlled by meds but has recently flared up, she was on 4 x 100mg of carbamazepine a day, the dr has upped it to 6 a day and also gave her a cream, capsaicin, which is apparently made of chillies! She said it stings her skin and she's been on 6 pills a day since Tuesday with no difference. What treatment did your mum get in hospital and did it bring it under control? My mum is struggling to eat or drink, she's living off scrambled egg, custard and rice pudding. Sorry this is a bit long but I'm so relieved to find someone in the same boat! She's driving me nuts complaining about her face and groaning on top of the dementia!
     
  6. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Hi opaline mums had trigem for years carbamazepine and phenytoin in 2012 after spells in hospital a consultant referred her for radio tactic surgery (gamma knife) this did the trick until the summer when she had a massive flare up and nothing was helping oramorph !!! They changed her Meds now on carbamazepine and pregabalin they had referred her back to the consultant and when I got the appointment through I phoned and said she was much better they told me to still bring her and he's going to do the gamma knife again to try and get her pain free without Meds because of the AD he said the Meds won't help with her memory I know exactly how you feel I was in tears in the summer because you can't do anything and they do call it the suicide pain !!!
    Another thought is your mum b12 deficient they found mum was when she was in hospital and it attacks your nervousness system it's worth looking into mums been much better since the injections and I can tell when she's due sore mouth not wanting to eat so I've got that every two months instead of three if you want any info of where we are and consultants and the like you can private message me feel for you and your poor mum x
    Ps mums 84
     
  7. opaline

    opaline Registered User

    Nov 13, 2014
    182
    Thanks for your reply, she says it's 'different' from the usual pain and her even her tongue is sore! Got the GP in on Tuesday so would have thought he should have thought about B12 but she probably didn't tell him the full story, I was at work but my daughter was here. Haven't heard of the gamma knife, sounds a bit horrific but would be well worth it if it worked! She was offered an op years ago but wouldn't go because it wasn't a guaranteed cure. The GP is coming back in a week or so to check her blood again as he is concerned about the carbamezipine affecting her liver/kidney function. It's a vicious circle, will let you know how we get on. She will be 79 in April, xx
     
  8. opaline

    opaline Registered User

    Nov 13, 2014
    182
    Have just Googled the gamma knife and it's not horrific at all! Sounds as though it would be perfect, will have to speak to her GP and see if she would be suitable, many thanks, x
     
  9. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Exactly the same mums mouth sore tongue get them to check her for b12 it's sounds like it is to me couldn't believe the difference in mum after the injections one a day for seven days and then one every three months I would suggest you ask for them every two months and then it doesn't run out mums did and we were back to square one and on top of everything else you don't need it good luck hope your mums alright and your looking after yourself
    Take care x
     
  10. Pottingshed50

    Pottingshed50 Registered User

    Apr 8, 2012
    514

    Everything you have said in your post is exactly the same as how Mum was. I say was , but she is still with us aged now 95. It is a progression of the illness and I just wish someone could have said to us - this is nothing unusual , it is all part of it.

    It is just so blooming frustrating trying to tell them that no , Dad is not upstairs and no Mum and Dad do not live here, good grief they would have been about 110 at the time. Mum used to constantly leave notes out to my Grandfather , long since dead, saying "if you dont leave Mum some rent money the door will be locked and you will not be coming back in". All by the way in capital letters.

    It is just a phase they go through unfortunately but it drives you round the hat shop, you have my sympathy. Our Mum even reported her Mum and Dad missing to the police. The police were very good about it when they realised the situation.

    We had to change the bins as there was no chance of her recyling anything in the right bin, the Council agreed she could just have the one bin. Its little things like this that you dont think about.

    Be brave and we are all thinking of you.
     
  11. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    It makes you feel better knowing your not alone the packing drives me round the hat shop ( love that it made me smile ), phoned mum last night " can you tell me where my mother is ?" It's Sunday mum she will have gone to the club I'm getting used to saying things like that to her it felt weird at first but now things just seem to roll off my tongue This morning rang me to say she had been locked in the house and everyone has left can some one come and pick me up .I tell her to look out the window she sees familiar things and it seems to do the trick
    The bin thing !!! Every week rubbish in bottle bin u can't put this in here mum " I can they told me I can "got fed up of sorting bins so put it at top of garden where she can't see it ,will get the council to take it back your right lots of things you don't think about I find you sort one thing and then something else pops up mum still calls me by my name but introduces me as her sisters just smile now instead of correcting her it's nice to know people are thinking about me this forum is becoming my sanctuary and I've only been a member since Saturday were all in this together thanks for replying take care
     
  12. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Hi Tin yes your right we thought it was the beginning and put some of her-behaviour down to grief but from what I've read in other posts think mum must have had this a while with the things she is saying and doing
    don't know what stage she's at and the doc says they don't stage people now because everyone's different thanks for replying
    Take care x
     
  13. opaline

    opaline Registered User

    Nov 13, 2014
    182
    Sorry, pottingshed, but you made me laugh saying they would have been about 110! xx
     
  14. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,289
    SW London
    When my mother started wanting to go and see her parents, they would have been 125+!
    Even so, I was often going to 'ring them later to see when they'd like us to go - we wouldn't want to go all that way and find them out, would we?'

    As someone else said, after a while these things roll so easily off the tongue...
     
  15. Pottingshed50

    Pottingshed50 Registered User

    Apr 8, 2012
    514
    Anniebell

    Whilst sitting thinking this morning, what did come to mind was the fact that Mum went through a stage of not thinking it was her home, she would write notes to the fact that , again all in capitals,' she had gone to bed, didnt know whose bed she had taken but to remember to lock the front door please when you come to bed' Now that did use to get to me, it made me very sad. Yes and Mum used to lay the tea a plate with a sandwhich on it with a plate over it to stop it from curling. It breaks you heart when it happens , so I do know what you are going through.

    We had in the end to turn off the microwave as she regularly blew that up. The cooker also had to be disconnected and we got Apetito to deliver her midday meal so need for the cooker. You do feel awful but it is for the best.

    My thoughts and prayers are with you and your family.
     

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