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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, Sep 21, 2018.

  1. Goingbananas!

    Goingbananas! New member

    Sep 29, 2018
    5
    Hi all. My mother has vascular dementia. Still at home with carers twice daily. Recently got to the stage whereby she doesnt want to be alone. She's crying and distressed. She's been staying at my sister's all week. I've been there all day every day this week whilst my sister at work, then shes been there all evening and overnight. We're both exhausted. We don't know where to turn. Mum was more like her normal self Thursday, she wanted to go home. She is home today, my brother is there with her. She is on a loop about him leaving her alone. ... he needs to go to work. We've all got jobs, children at school...mum is nrly 2 hrs journey from any of us. We visit regularly. . most days are covered by us and her friends. Both parents moved away from where we all grew up 14 years ago when they needed to downsize. Dad died 8 years ago. She's adamant she won't go into a home. She is a homeowner. She has a SW. They are going to do a review to maybe increase carers to 3 times a day, alarms on the doors to help avoid wandering. (She has a tendancy to lock herself out. Bought home by paramedics after presenting distressed in tesco at 11.00pm) we fear that this won't be enough. Mum is bloody independant and awkward. She shuns all offers of help because "She can do it" or "I've done that already" or "i always do that" Any advice on what we should do next Would be appreciated. Many thanks x
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    Hello @Goingbananas!, you are welcome here.

    You are at a point many face, where what the person wants is eclipsed by what they need. It is also common to reach a point where what is needed cannot be provided by family.

    It’s good that you have a review scheduled and I hope you get benefit from that.

    I’m sure others who have been in this situation will be along to offer the benefit of their experience.

    In the meantime, you can, if you wish, do a bit of research in the publications list that you can reach with this link
    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hello @Goingbananas!
    a warm welcome from me too
    you mention a review of your mum's care needs - it may be worth asking about days at a day centre so your mum is safely occupied and has company while your brother is at work (you could call it a lunch club or something she will accept) - also mention a sitter for company (who could be called a friend of your brother's who has some spare time ...)
    the side by side scheme may be helpful
    https://www.alzheimers.org.uk/get-support/your-support-services/side-by-side
    a key safe might help when she locks herself out, if there is someone you can trust with the combination
    and here's a link to the main AS site's directory of local servicex, maybe something there will be of help
    https://www.alzheimers.org.uk/find-support-near-you
     
  4. ourmanhiggins

    ourmanhiggins New member

    Oct 2, 2018
    2
    my spouse was recently diagnosed with early to mild dementia and I would like a better understanding
     
  5. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    Hello @ourmanhiggins, you are welcome here and I hope you find the forum to be a friendly and supportive place.

    Do take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    https://www.alzheimers.org.uk/find-support-near-you

    You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Hello @ourmanhiggins and welcome to Talking Point.
    Its a pretty steep learning curve when someone first gets diagnosed with dementia.
    The Alzheimers Society has a pretty large range of fact sheets which can be found here
    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    If there are any specific questions you want to ask then probably it would be a good idea to start a new topic in one of the areas that seems most apropriate - I care for someone with dementia, might be best
     
  7. ourmanhiggins

    ourmanhiggins New member

    Oct 2, 2018
    2
    thanks ever so much for the WELCOME. I have a very pressing question that has haunted me for some time now and that is, how easy can someone with early to mild dementia (alcohol related) be manipulated into doing something that they ordinarily wouldn't do?
     
  8. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    I think my wife would be very open to suggestion. This is why being vulnerable to being scammed is an issue.

    I find I have to be very alert in relation to my wife's activities.
     
  9. Glasgmum

    Glasgmum New member

    Oct 2, 2018
    1
    Hi im a single mum in Glasgow looking for advice if possible for my partner he's been looking after his aunt for last 10yrs her alzheimers is starting to progress more. We have been trying to find out if he can take over her council tenancy as she refuses to go in to a nursing home..he takes care of all her needs medical bathing etc. Swork are no help whatsoever or district nurses waited over 8months to get a zimmer frame and mobility aids for her we ended up getting them ourselves. He is stressed and worried as he is her guardian that sw will force her into a home. We waited 6+1/2hrs yesterday for an ambulance. To be told she broke her foot. Please any help be much appreciated.
     
  10. Katyhd4058

    Katyhd4058 New member

    Oct 2, 2018
    3
    Female
    Marston Green
    Hi, I’m new to this so bear with me please. I met a very lovely lady at Dementia Connect today and she told me about talking point and I decided to join this evening.

    My mom has Alzheimers, she was diagnosed earlier this year, but for 6/7 years she has been suffering with short term memory loss, well that is what the hospital told us it was. She was sent to a John Black clinic for the past 24 months and they said she didn’t have dementia as she was aceing all the tests they were doing with her. My dad kept pushing for more tests and they eventually scanned her again and Alzheimers showed up this year. She also has Myeloma cancer that returned this year after 8 years in remission, the hospital are not going to treat her cancer again like they did 8 years ago but may perform some light chemo in December.

    My dad has been looking after my mom at home since the start of her cancer journey 8 years ago, she is still at home with him but seems to be getting worse a little bit more each day. She told him yesterday that he isn’t her husband, hearing that hit him like a tonne of bricks.

    Sorry this introduction is going on a bit. I do have lots of questions to ask so you will all be hearing off me quite a bit so I will apologise now.

    Bye for now x
     
  11. Katyhd4058

    Katyhd4058 New member

    Oct 2, 2018
    3
    Female
    Marston Green
    Hi

    See I’m back again. We are having trouble entertaining/distracting mom and the lady I met today told me that she gave her mother in law a doll and a pile of baby clothes and that kept her quite for a while.

    Has anyone else tried this?
    Did it work/help?
    Can I just pick any old doll or does it need to look as realistic as possible?

    Thanks x
     
  12. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,011
    Male
    Bristol
    Welcome to TP @Katyhd4058.
    I'm sorry your mum has dementia and her cancer is returning. The impact on you and your dad has to be awful. Sadly, your mum not recognising your dad as her husband is not uncommon. That's no compensation, but you will find many here who know what you are going through.
    I have not experienced any success with dolls, but have read of teddy bears bringing comfort and twiddle muffs work wonders with my OH, so if it calms your mum for an hour or two then it's worth trying.
     
  13. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,011
    Male
    Bristol
    Hullo and welcome @Glasgmum. Sorry your partners aunt has broken her foot and SW are not very helpful. It's been a few years since I left Scotland, so can't help on the situation there. WE have a few members who will know more.
    Have you tried your local Alzheimer's Scotland office on https://www.alzscot.org/ ?
    I found AgeUK to be helpful too, https://www.ageuk.org.uk/scotland/ should help you find a local office.
    Good luck.
     
  14. Distresseddaughter

    Distresseddaughter New member

    Oct 3, 2018
    1
    My mum was diagnosed with Vascular dementia in 2010 but had shown signs around three years prior to that. She is now in a care home as of five weeks ago and my sister and I are really struggling. Mum is happy to see us but when it gets to time for us to leave she gets angry, says awful things to us and often throws things too. She had not been as aggressive prior to moving in the home but had started these behaviours.

    My sister and I are finding it increasingly hard to visit as her behaviour is so upsetting and we are worried we are causing her pain and upset.

    She asks to go home and when we say we cant she gets so angry. We have monitored her carefully since she moved in and are liaising with the home to find strategies but its not getting any easier.

    Help!
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Hello @Distresseddaughter and welcome to talking point

    Getting upset when relatives are leaving is a very common thing. When I visited mum in her care home I never said goodbye to her. I used to leave my coat and bag in the office so there was no visual cue of picking them up when I was going to leave to go home. I just used to say that i was going to the loo and that i would see her soon. This was quite true as I did go to the loo and I did come back and see her quite soon, but it prevented her from getting upset. I also used to time my visits so that I left when there was some distraction like dinner. I also never visited later on in the afternoon as she would sundown and be more confused and belligerent then.

    Asking to go home is so very, very common and you may find that the home she wants to go back to is not the home that she has come from - quite often its a previous home, usually a childhood home. Its best not to argue with her as, as you have found, they often find it very upsetting. This is the time for "love lies" - find a good excuse that she will accept. I used to tell mum that she was convalescing and she could come home when the doctor said. Other people say that its too cold/hot/dark/wet, but they can go home when the weather is better, or that the decorators are in and they can go back when its finished. Find something that will satisfy her and stich to it, just dont make the story too complex and then swiftly change the subject.

    Five weeks is still early days and Im sure it will improve.
     
  16. Amelie5a

    Amelie5a Registered User

    Nov 5, 2014
    90
    Scotland
    Glasgmum, I'm afraid I have no experience of social services in Glasgow but Alzheimers Scotland has a number of resources to support PWDs and their carers.

    If you follow the link below you'll be on a page which will point you to Dementia Advisors for whichever part of Glasgow is relevant and also give you details of a 24 hour helpline.

    https://www.alzscot.org/services_and_support/dementia_advisors
     
  17. Lindmand

    Lindmand New member

    Oct 4, 2018
    3
    Good morning I am a daughter taking care of my mother .
    She has been in a care home for the last two years .
    Just recently we brought her home to look after her as she has reached the end of her life .
    Mum is bedridden 90 years old and has Lewy Body dementia.
    The problem I am experiencing is changing incontinence pads .
    My mum is screaming and lashing out and doesn’t want me touch her .
    I am trying to calm the situation by distraction ,walking away and going back later ,but it’s not working .
    Can anyone offer me some advice please ?
     
  18. chris53

    chris53 Registered User

    Nov 9, 2009
    2,929
    London
    Good morning Lindmand, a warm welcome to you to Talking Point,hope this site will be of help and support to you as and when needed.
    So sorry that mum does not seem to like her pads changing, a difficult situation for a lot of us, can only suggest that you may wish to contact mum's doctor, for an incontinance nurse to come out to assess her,and they may have some ideas to help,or how to keep mum calm whilst she is being changed,I do hope you get practical help soon.
    Take care
     
  19. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    Hello @Lindmand, welcome from me too.

    I wonder if it would be an idea to talk to the Care Home as they had probably worked out a strategy to deal with this.

    There is a possibility that your mother is either very embarrassed or even scared if she doesn’t recognise you or what is happening in these moments. I wonder if introducing yourself and saying what is happening and why would help.
     
  20. Lindmand

    Lindmand New member

    Oct 4, 2018
    3
     
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