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  1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Welcome to Talking Point - introduce yourself here

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

  1. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,928
    Male
    Bristol
    Welcome to Talking Point, glasshalfempty. You will certainly get plenty of good advice here, and a safe place to let off steam. We are all on the same journey, and understand. I hope you will post further when you are ready.
    All the best to you.
     
  2. glasshalfempty

    glasshalfempty New member

    Aug 20, 2018
    6
  3. CMBM

    CMBM New member

    Aug 21, 2018
    1
    Hi! I'm new to the group and have joined for support. My dad is 93 and was diagnosed in August 2015 with Unspecified Vascular Dementia. I lived with and cared for both of my parents, my mother having died at home with us in 2008 after a horrible battle with Parkinsons and Vascular Dementia. However, as my only close relative lives in America, when my dad's condition deteriorated 2.5years ago, I had to place him in a care home. I visit him at least 4x a week, usually more often, but still feel guilty especially as I have to be on the ball constantly and proactively to ensure he receives even a reasonable level of care. Currently, I'm trying to find out more about UNSPECIFIED Vascular Dementia, as traditional tips for managing my dad's say hello!
     
  4. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,928
    Male
    Bristol
    Welcome to Talking Point, @CMBM. I'm sorry you are having to look after your dad after seeing your mum die from Dementia. That would hit anyone hard and you have nothing to be guilty about, especially as you are already doing your best to make sure the care home looks after him as well as you would do yourself.
    I don't know anything about unspecified vascular dementia, and the factsheets don't seem to cover it. I'll put a link to all the factsheets for different types and hope something in there helps you. https://www.alzheimers.org.uk/about-dementia/types-dementia.
     
  5. StarUnicorn

    StarUnicorn New member

    Aug 22, 2018
    2
    Hi all, just joined and this is my first time posting. My partner's step dad is currently in the process of a diagnosis for dementia, he's just had his blood test and we have to wait a few weeks to see his Dr. I've taken the role of contact/carer to try to help him. We noticed his behaviour changing over Christmas and his memory has declined since then, it's taken us this long to get him to see a doctor as he was incredibly independent and headstrong. Since December he has become very easily confused, he frequently doesn't know what day it is, is always one or two days out and has lost a chunk of about 20 years old his memory. He confuses me with my partners mother (his ex wife) and often thinks that I'm in a relationship with him and that my actual partner is my son! It's all very confusing and stressful. He has forgotten how to use his pin on his card and I had to take him to the bank to get some money today as he had run out of cash weeks ago! I'm trying to help him but it is difficult at times when he gets so confused. I guess until we get a diagnosis we can't really move ahead but it's really worrying. He is still driving, which is also a concern and he lives alone.
     
  6. Bill Will

    Bill Will New member

    Aug 22, 2018
    7
    Hi - I searched for forums to discuss dementia and this is the most active one I found. My father suffers from dementia, and is now threatened to be "kicked out" of the memory care facility he's in, because he is not following instructions from the aids and nurses at the facility. I'm looking to get thoughts from others who may have experience in this area.
     
  7. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,936
    N Ireland
    Hello @StarUnicorn, welcome to TP, I hope you find the forum to be a friendly, informative and supportive place.

    What you are describing is quite common and I see you are awaiting a diagnosis. In the meantime it wouldn’t do any harm to gen up on a few things as being prepared is useful. Things like getting affairs in order if the person still has capacity to make a will, grant Power of Attorney etc., are very useful. Looking to see if any support will be available in your area in the event of a diagnosis can also help. You can read about these things and then do a post code search for support availability by following these links
    https://www.alzheimers.org.uk/find-support-near-you

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

    Beyond that do keep posting with any questions as the membership are a knowledgeable group.
     
  8. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,936
    N Ireland
    Hello again, I and others have replied to your other post. In relation to your comment about this site, I have to agree with you as I looked at a few and even joined one other but never found another as active as TP. We do have members in many parts of the world.

    I hope you keep posting as everyone here travels the same rough road and we gain from mutual support.

    I wish you and your father the best of luck.
     
  9. StarUnicorn

    StarUnicorn New member

    Aug 22, 2018
    2
     
  10. Mervyn

    Mervyn New member

    Aug 23, 2018
    1
    Hi, this is my first contact and I would appreciate any advice or thoughts please.

    My wife has a form of Alzheimers (Post Cortical Atrophy) which means that ,as well as many of the other common conditions, she cannot see properly. This has nothing to do with her eyes as they are perfectly healthy and in fact it was through an eye check up that her brain condition was discovered.
    This means that she cannot keep herself occupied with hobbies, TV, housework etc. which leads to her becoming frustrated and getting down ,with "long days" as she says.

    Another main issue is that she constantly thinks that there are other people in the house & that they are wearing her clothes, using the toilet etc. She gets really very angry & upset about this and she is now obsessed with washing clothes & cleanliness, especially after using the toilet and now hides everything and takes clothes to be beside the bed at night.

    She also has many of the issues which many of you also have, e.g. forgetfulness, confusion, extreme frustration, not knowing who I am at times, wanting to go home, constantly losing things (after hiding them) & falling asleep constantly.

    Her condition is almost like schizophrenia as generally she is still her loving, fun loving self but her mood can change very suddenly particularly if she becomes frustrated, which is understandable given her eyesight condition.

    Thank you.
     
  11. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,410
    leicester
    Hello @Mervyn welcome to TP
    I personally have no experience of the type of dementia that your wife has been diagnosed with and I admit I had to read the following fact before replying to your post
    https://www.alzheimers.org.uk/about-dementia/types-dementia/Posterior-cortical-atrophy

    As you mention a lot of the symptoms are the same as people with Alzheimer’s so I hope you will find a lot of support here on the forum.
    Now you have found us I hope you will continue to post
     
  12. Fuchsia girl

    Fuchsia girl New member

    Apr 25, 2018
    3
    My 72 year old sister has quite advanced dementia. I struggled for a long time in persuading her there was something wrong. She never accepted she had a problem but was eventually diagnosed in June 2017. She has deteriorated quite rapidly since then. Despite having carers coming to the house since January, and installing a movement monitoring system, her safety became a real concern. She moved into a care home two weeks ago and has settled in better than I anticipated.
    I have sole responsibility for her (no other close family) - have all the necessary Power of Attorney. I now have to clear out and sell her house (our old family home). I find this distressing being aware she is still alive but never coming home.

    I know its early days but I find visiting her extremely upsetting and usually become tearful when I leave. She is, of course, in her own little world in which I don't really play a part. It really is so terribly heartbreaking.
     
  13. canary

    canary Registered User

    Feb 25, 2014
    10,578
    Female
    South coast
    Hello @Fuchsia girl and welcome to Talking Point.

    When someone goes into a care home it isnt just them that needs to adjust - we do too. Our heads know that it is the right place for them, but our hearts take a while to catch up. When mum was in her care home I found that after a while I got to know the staff, other residents and their families and they became almost like an extended family. Just give it time.

    Clearing someones house with a view to selling it while they are still alive is a horrible job - it feels like betrayal somehow. I found I kept finding stuff and having to go away for a little weep. Is there anyone (even a friend of yours) who can give you a hand?
     
  14. Fuchsia girl

    Fuchsia girl New member

    Apr 25, 2018
    3
     
  15. Granny Smith

    Granny Smith New member

    Aug 24, 2018
    1
    Hi, I'm Granny Smith. I'm 72 and my husband of 76, was diagnosed 4years ago with Alzheimer's and vascular dementia . Fortunately detererioration is slower than I expected. His is still able to drive, mostly locally, which gives him independence. However, he's not the same person! His walking ability has deteriorated to a shuffle and he has falls, which he is unable to get up from. I am very aware that others are far worse off than I am but I'm struggling mentally and emotionally. I think it's the constancy of it and knowing that things will only get worse! I'm sure others must feel as I do and it would be good to hear from other members. Thank you.
     
  16. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,410
    leicester
    Hi @Granny Smith welcome to TP
    I am not surprised that after all this time you are struggling with all the emotions that go with being a carer.
    Maybe it’s coming to the point of asking SS for a needs assessment and see about getting some help in place before the falls escalate to a new level.
    I worry that if he has driven off to somewhere from home and has a fall it could be very difficult for him to get home
    I hope you will continue to post now you have found us
     
  17. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,936
    N Ireland
    Hello and welcome to TP from me too @Granny Smith.

    If you don't know how to go about getting a needs assessment done the AS Factsheet may help. You can find it by clicking this link https://www.alzheimers.org.uk/sites...assessment_for_care_in_support_in_england.pdf

    You may notice that the Factsheet mentions the GP and I wonder if asking the GP may help you in relation your husband's falls as an Occupational Therapist may help.

    I notice that your husband is still driving. This is often a difficult issue in dementia as there is a requirement to notify the DVLA and insurers and failure to do so may cause problems. Here is a link to a Factsheet which gives details of the issues https://www.alzheimers.org.uk/sites...nloads/driving_and_dementia_factsheet_439.pdf
     
  18. Frantic

    Frantic New member

    Aug 17, 2018
    7
    I retired 8½ years ago to look after my wife, who was later diagnosed with mixed dementia. I looked after her at home for 6 years.


    I had a lot of help with day care until that broke down because carers could not cope with her agitation; so called professionals could not do their jobs properly; and the stress caused by the incompetence of said ‘professionals’ made me ill.


    She is now in a residential nursing home where I visit every day unless out of town with interests that I have been told I must keep up, but make me unhappy not to be with her.


    I am posting separately about my concerns on toileting.
     
  19. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,928
    Male
    Bristol
    Welcome to Talking Point, Frantic. I know what you mean about some carers and some care agencies we have had. You should not let the guilt monster stop you having some time to yourself, it's the best way to remain sane and happy which will help you support your wife better.
     
  20. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,410
    leicester
    Hello @Frantic and a warm welcome from me although obviously sorry for the reason that you needed to join us all here on TP
    I think you are very sensible in keep up with your interests it is so important I wish I had!
     
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