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Welcome to Talking Point - introduce yourself here

Discussion in 'Welcome and how to use Dementia Talking Point' started by Mark_W, Jan 17, 2018.

  1. yorkie46

    yorkie46 Registered User

    Jan 28, 2014
    249
    Southampton
    Thanks for your suggestion, I have no intention of saying anything to my husband, my biggest worry is that whatever I say to doctors is passed on to him. From past experience at memory clinic appointments whenever they've asked questions like do you find he has a shorter fuse or is more irritable, if I answer yes he jumps in with 'so have you', they asked if I found he left lights on and he immediately said no that's what she does. This is why I find things so difficult. I regularly update the GP with notes of things that occur which I feel illustrate his difficulties.
     
  2. bluesman

    bluesman New member

    Jan 19, 2018
    1
    Hello everyone. i have just signed up today as I have slowly come to realise that I need support caring for my wife .She is 69 and has been living with Alzheimers for nearly 5 years .We have been married for 48 years and met at school!!The thing that as made me turn to Talking Points is that just this week she has is telling me that her husband has gone away. She talks to me as if I am a new person come into her life and home and asks me all about myself and telling me of the things she likes doing with her husband .She wonders where he has gone but is glad i'm with her to care and support her.She may slip back into realising I am her husband but then goes back to wondering where I've gone again.I feel such a sense of loss.
     
  3. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    711
    Kent
    Welcome bluesman, It’s horrid when a PWD (person with dementia) fails to recognise us, as you read through some of the posts you will see that others have related this. My mum (90) thinks I am her older sister, introduces me as such and calls me Eileen. I corrected her at first, now I don’t bother, and it really hurts each time, but I smile and keep going.
     
  4. Clutterbuck

    Clutterbuck New member

    Jan 20, 2018
    8
    Female
    Derbyshire
    Hi, I have joined the forum this morning. The reason being my Dad, aged 77 has vascular dementia. He was diagnosed about 1 1/2 yes ago. He is also registered blind & is completely blind which obviously complicates the situation with the Dementia due to not being able to give him visual cues to help, also disorientation much worse etc.
    Is there anyone out there who has this similar experiece ofor dementia & sight impairment?
    Thanks.
     
  5. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,509
    Ireland
    Welcome, bluesman. It is sad when a spouse no longer recognises us as such. My husband, like your wife, didn't know exactly who I was for years. But to the day he died, he recognised me as someone he loved, and who loved him, so that was something to be thankful for. He knew I was there to help, like your wife. Unfortunately, when it came eventually to personal care, changing incontinence pads and bathing etc, he wouldn't have me helping him (or any woman), and became aggressive about it, so had to go to a Nursing Home - where he thrived and was happy.

    It's very sad after so many years together. Your wife may have your younger self in mind, who knows? All you can do is go with the flow. Don't contradict her, don't argue the point. At least she's happy for you to be there helping.
     
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hello @Clutterbuck
    and welcome to TP
    I don't have personal experience of your dad's situation
    but the RNIB has some info which may be helpful, link here
    https://www.rnib.org.uk/eye-health/sight-loss-other-medical-conditions/dementia-and-sight-loss
    might you start a thread of your own so that more members may see your particular question
    maybe here
    https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/
    just press the blue 'Post new Thread' button at top right, give your thread a title that shows the subject eg 'vascular dementia and blindness' and type away
     
  7. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hello @bluesman
    welcome from me too
    I guess your wife at times is back in your younger days, when you looked youthful and handsome (rather than mature and handsome!) so is looking out for her husband of decades ago and none of us look as we did then - the fortunate thing is that she is comfortable with you and happy for you to be with her, so something is telling her that you are a good man who is not at all a threat to her, someone whom she can be friendly with - and she is talking of the good times she has spent with you, so you know she thinks highly of you
    I do agree, go with the flow and share her reminiscing - maybe say you went to the same place/did the same things, what a wonderful coincidence, and go on to chat about that particular memory - it's a just different way of sharing
    you might try going out of the room, waiting for a few minutes (maybe make a cuppa ...) and then go back in but before she can see you call out to her, just something simple eg 'hi (her name), it's (your name), I'm back and have a cuppa for you ...' - my dad seems to recognise my voice and orientates himself to hearing me, so accepts whatever I look like (so far) - some people even change their jumper/top so you go back in the room looking different from the person she thought she was speaking to earlier
     
  8. Sara the Carer

    Sara the Carer New member

    Jan 20, 2018
    2
    Hello there,
    My brother and I are looking after our 90 yo Mother who is at late stage Alzeimers. Mother looked after our father for two years prior to his death 2 years ago (he had Vascular Dementia).
    Mother has been bed bound for almost 12 months now following surgery for a broken hip.
    We are doing everything for her and she is currently living in her own home.
    It is very hard as Mother can be very difficult to deal with - she was a very formidable person before, but seems to have turned into a very unreasonable, nasty person.
    Mother often regurgitates her food (esp when she gobbles her food). However, some days she eats almost nothing.
     
  9. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hello @Sara the Carer
    a warm welcome to TP
    my condolences on the death of your father -- and then you've had to deal with a diagnosis for your mother too, and her challenging behaviour - that's a lot for you and your brother to cope with

    sadly the dementia can lead to nasty behaviour often aimed at the main carer, and it's tough to deal with

    have you had an assessment by a SALT team to check your mum's swallowing - you can ask for this through her GP
    and do you have some support n place - contact her Local Authority Adult Services for an assessment of her care needs which may result in a care package being put in place to take some of the strain off you
    I hope your mum is receiving Attendance Allowance and a disregard of her Council Tax - both help with funding any care fees

    there's lots of sympathy and support from members here - so now you've found us, settle in and start a thread of your own whenever you're ready
     
  10. Gemma C

    Gemma C New member

    Jan 20, 2018
    1
    Hi
    I'm Gemma and my mum has just been diagnosed with vascular dementia. Still in shock but wanted to get some support from others who are looking after someone.
     
  11. Sara the Carer

    Sara the Carer New member

    Jan 20, 2018
    2
    Many thanks for your reply, we are very fortunate (think thats the wrong word but hey!) that we have CHC as Mum cannot do anything for herself, conversations are very very few and far between. Indeed its very hard/tough/trying/frustrating and all those other words that explain how we are feeling. Personally, I don’t think I have grieved for Dad yet - it will probably hit me like a truck when I do.
    The main thing now is Mum.
    We are trying to keep her @home until the end. However, I am realistic knowing that we could be doing this for a long while - Mother has got over this current dose of flu, whilst my brother and I have been like the walking dead.
    Whilst I am sat here with Mum, she is trying to make herself sick. Is this normal? In the past I have put this down to reflux, but I’m not so sure now. Any suggestions please.
     
  12. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    711
    Kent
    Hi Gemma, my mum also has vascular dementia, feel free to ask questions, look through other posts, or just moan. The people on TP have regrettably so much experience on this disease. Ask away.
     
  13. Nitwit

    Nitwit New member

    Jan 19, 2018
    5
    Hi, Marilyn my wife for 35 years (68 years old) has advanced, vascular dementia and is fortunately in a wonderful nursing home that is both comforting and reassuring. Our son and I were due to take her to a memory clinic last September as it was becoming apparent after her 4th TIA in September 2015 that she had memory issues that were not too severe. Unfortunately, a couple of weeks before her appointment she contracted urosepsis that had a dramatic, profound impact on her dementia and after approximately 8 weeks in hospital she was discharged to the nursing home unable to walk or go to the toilet herself. It really is deeply depressing to see such a wonderful, vibrant mind disintegrate so rapidly and more and more difficult to stay strong and cheerful on my daily 60 mile commute to visit her, especially as she occasionally asks me "are we going now?" or "am I being dumped again?" that is really heart rendering when I return to an empty house. Fortunately our son who lives 735 miles away in the far NW Highlands has been a huge support trying to fly down for a long weekend every other weekend but it is still very difficult to cope at times.
     
  14. Egbert Nobacon

    Egbert Nobacon New member

    Jan 19, 2018
    3
    My wife has Alzheimer's, which, having looked at just a few of the posts, doesn't make me special. After several years I recognise and sympathise with a lot of the concerns, issues, etc. I've learned/am learning how best to manage the situation and to care for my wife, which isn't always easy. The thing that I'm finding most difficult is her total dependence on me. She becomes most anxious when I'm not around and so I don't have the opportunity to talk to others in my position to get advice. Even her darling children are unable to offer respite for short periods. I feel that the only option is to put her into a care home for a few days to give me time to gather my thoughts and to address a few practical matters. I'm worried that this would really upset her even more. I'm sure I'm not unique so if anyone has any thoughts I'd appreciate them.
     
  15. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    711
    Kent
    Good morning, dementia is a foul disease, and there are so many that are affected, both those with and those caring.
    My parents are my reason for being here, but many members have OH (other half) affected.
    Someone will have insight into your dilemma.
     
  16. Clutterbuck

    Clutterbuck New member

    Jan 20, 2018
    8
    Female
    Derbyshire
    Hello, I joined Talking Point yesterday and have put on a couple of messages but not sure if I introduced myself!!
    My Dad who was diagnosed with vascular dementia 1 1/2 yrs ago, he is also registered blind and is completely blind. Dad is probably mid stage with the condition and is cared for by his wife at their home. The situation is becoming more difficult as time progresses. Dad's behaviour and presentation fluctuates on a daily basis. He is an intelligent man and has always loved learning new things - he was a physicist by profession. I have always been close to my Dad and have a good relationship with his wife and want to be able to support them both as much as I can.
    I joined the forum to share our experiences, to get advice and to offer advise
    and help where I can.
    I look forward to chatting with you.
     
  17. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,442
    Female
    Dundee
    Good morning and welcome to TP. I'm glad you found the forum!
     
  18. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hello @Nitwit
    and welcome to TP
    it's good to read that your wife is in such a good nursing home - it gives so much peace of mind to know that our loved one (in my case my dad) is safe and well looked after
    not easy when they ask when's it time to go home - I must admit I tend to fudge that question saying 'you're here for the night, nice and comfy, then we'll see' or some such - dad asks much less often now
    what a long journey you have to visit - that must be tiring - is there a comfy B&B close by so might stay overnight once in a while
    it's great that you have support form your son, that matters a lot
    and now you have the support of this wonderful community too - so settle in and start your own thread whenever you have something you want to share
     
  19. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hi @Egbert Nobacon
    oh you are special, especially to your family - just, sadly, in a familiar situation to many members here
    sounds as though you do need some time to yourself, so do look into respite - unfortunately your wife may not be wholly on board with the idea; time for some 'tough love' though, so that you are able to continue to care for her at home
    other members have discussed respite - maybe put the word into the search box at extreme top of this page to see their threads
    have you had an assessment of your wife's car needs by your Local Authority Adult Services - your wife has a right to this; and you have a right to a carer's assessment (when you ask, don't discuss her finances; there will be a financial assessment after the care needs one) - a care package may then be put in place eg home care visits, a sitter, day care and respite along with an OT visit to suggest aids and adaptions to your home - the day care may well be suitable to give your wife something outside the home and you some time to do your own thing knowing she is well cared for
    most carers worry that their caree won't accept or enjoy day care or respite - often they actually do - and sometimes what you need overrides what your wife may not wholly want
     
  20. Posie

    Posie New member

    Jan 21, 2018
    2
    Hello, I'm new here. I just found this site this afternoon whilst googling for info on LPAs, and I think there is lots of useful stuff on here for me. My Dad, 90, has vascular dementia, diagnosed about 2 years ago and really clear to us, his family, for about 4 years. We are lucky, there are enough of us to spread the caring load most of the time, and we are over the initial shock now, it was scary at the beginning. My mum, 89, is his carer, and she has had a very hard time coming to terms with it, and will not use the word dementia. She will not accept any form of help other than from me and my siblings, and this does cause problems. There do actually seem to be some quite good services in our area, but unfortunately they come with the word dementia attached, so Mum will not access any of the carer support or day services we have found locally. Dad can't be left on his own now and has gone walkabout from home and when out a few times; he doesn't know who we are really, but he's always pleased to see us! I've read some of the threads on here and I recognise some of the issues we have already been through especially with regard to giving up driving, realising he doesn't know who we are anymore, and having to take a step back from caring, despite feeling very guilty, when my parents won't access any other help. We are I'm afraid, now waiting for some inevitable disaster to happen before they will take any outside help. My worst fear is that my Mum will have to go into hospital and we will be faced with looking for a care home for Dad in an emergency situation, rather than being able to take our time and plan for the future.

    It's good to find a place where so many people are going through similar things!
     
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