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.

New to this site but desperately seeking help!

Discussion in 'I care for a person with dementia' started by naomileah123, Jul 17, 2015.

  1. naomileah123

    naomileah123 Registered User

    Jul 17, 2015
    4
    Leeds, West Yorkshire
    Hi,

    My name is Naomi and I'm 24. My grandparents brought me up for my entire life and on Wednesday my nana was diagnosed with vascular dementia.

    They told us there is no cure and nothing we can do but watch it deteriorate and be there for her but surely that can't be right? There must things we can do to help.

    I have a 2 year old son who adores his 'nan nan' and I'm trying really hard to carry on as normal and just be there for her as much as I can but I feel like I've been hit by a bus.

    I just want to know if there is anything anyone can suggest for us to try and slow this disease down? Any alternative therapy? Just anything.

    Thank you for reading.

    Naomi x
     
  2. JayGun

    JayGun Registered User

    Jun 24, 2013
    298
    Oh bless you Naomi, I can "hear" the upset in your words. I don't know much about vascular dementia. Have they put her on any medication at all? My mother in law is 84 with Alzheiner's and she is on a couple of drugs that might slow it down a bit, and keep her calmer.

    The best thing we have found is social interaction and trying to keep things "normal".
     
  3. Vesnina2

    Vesnina2 Registered User

    Oct 8, 2014
    21
    Yes, there are various cures that can help to make the process easier
    and more pleasant for both the patient and the family.
    However, it is a neurologist who can choose and prescribe the best medication.


    And, of course, patience, understanding... and this forum, this will help. :)
     
  4. naomileah123

    naomileah123 Registered User

    Jul 17, 2015
    4
    Leeds, West Yorkshire
    I went to the appointment with her and when the consultant said what it was I had to leave the room because I just didn't want her to see me so upset. She's so important to me, aside from my son and partner she's the most important person in the world to me and this disease is taking her from me bit by bit.

    They've said there is no medication she can have unfortunately, she's beat cancer twice which weakened her immune system and that's meant whatever they would have given her, her body can't handle.

    I'm trying to keep things normal but she just seems to worsen day by day. She's becoming so nasty and aggressive to my grandad and I can see it taking its toll on him.

    I just feel so angry that she beat aggressive breast and bladder cancer twice for this to be what takes her. When they said there was nothing they could do it just made me feel so helpless because she's always told me there's no such thing as 'can't' and I just feel there must be something. She's only 72 and in only a year it's left her a shadow of the person she was.
     
  5. naomileah123

    naomileah123 Registered User

    Jul 17, 2015
    4
    Leeds, West Yorkshire
    Unfortunately the neurologist was the one who said there was no medication she could have due to having cancer twice and it weakening her immune system.

    I've downloaded all the memory apps on her iPad for her and made flash cards and tried to find like smells of all her favourite things.

    I just feel stupid sitting there and watching her die without trying to do something. It's like the person she is, died a little more each day and I'm just watching her rot in her body till it gives up too. Maybe I'm just clutching at straws because I'm so desperate not to lose her but I just didn't know if there was any alternative medicines or anything seen as they won't sign off on any actual medication.
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,558
    Female
    South coast
    Hi Naomi and welcome to TP
    Hearing a diagnosis of dementia is a shock and I can hear that in your post.
    Although you can get drugs to slow down the progress of Alzheimers, they do not work for vascular dementia and, unfortunately, there is no cure for any type of dementia. Im sure that is not want you wanted to hear, but Im afraid it is the sad truth. If you come across anybody suggesting alternative therapy, food supplements or snake oil do not be tempted to part with your money.

    In the meanwhile people have often have many years of good quality life and medication can often help with some of the symptoms. I was very shocked when my husband was diagnosed with dementia, but as some one on here pointed out - nothing has actually changed, you just have a label now.

    I have found everyone on here amazingly helpful.
     
  7. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,497
    Female
    Near Southampton
    I'm sorry to have to say that this is not correct.
    There is no cure for vascular dementia, nor anything that can slow it down as with Alzheimer's disease.
    There are various forms of medication that can help with some of the symptoms, should they arise such as paranoia, hallucination and aggression amongst others but nothing will stop the actual progress of the illness.

    I'm sure such alternative therapies as aromatherapy and massage can help to calm a person and improve their wellbeing so it is always worth a try. I'm sure you know you have to be careful though as some products can be very strong.

    I'm so sorry you are facing this. My husband was diagnosed with vascular dementia at 70 but had had problems for some time before this. I'm sure you will find help and support here on TP.
     
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,296
    SW London
    Although there is no cure for dementia, symptoms such as nastiness and aggression may respond to medication. Please ask the consultant or GP if there are meds that can help with these distressing aspects - spell out the difficult behaviour if necessary. If you don't want to say anything in front of your nan you can write it all down - keep it very clear and brief - and slip it to him or her, or send it beforehand.
     
  9. CynthsDaugh

    CynthsDaugh Registered User

    May 5, 2015
    140
    Salford, Lancashire
    Hi Naomi,

    So sorry to hear of your Nans diagnosis, getting the official 'word' does hit hard but once you come to terms with it gets easier and leads to things/places that can help such as here!.

    I agree with JayGun about social interaction - it does really help & I can actually tell the difference in my Mum if she has a day of interaction with other people. She can be tired but definately a bit less confused. Does your Nan have hobbies/interests you can encourage her join related groups?

    Does the neurologist know about the aggression? There might be some medication that could help with that if it is becoming a problem.

    Sally
     
  10. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    I think we can all feel your pain Naomi.

    The aggression towards your dad must be very hard for all of you. Sometimes, though, this is just a phase that people go through and they do calm down and become less inclined towards aggression. I hope this and the fact as others have mentioned that aggression can sometimes be lessened by the use of medication will give you some hope.

    We all need hope.
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,591
    Kent
    Hello Naomi

    I know how devastating a diagnosis of dementia is and you need time to let it sink in even though you will always be upset about it.

    There is medication to ease aggression and again I understand how painful it will be for both you and your granddad to have to experience this. My husband was verbally aggressive to me and I know how much it hurts.

    Please don`t feel all you can do is sit and watch your grandmother die. Her aggression may be caused by fear , not understanding what is happening to her.

    The following may help you understand what is going on in her mind.


    http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

    I hope it helps and I hope the support you get from Talking Point will help you too.
     
  12. JayGun

    JayGun Registered User

    Jun 24, 2013
    298
    It's very hard lovely isn't it? Of course you feel angry. And helpless.

    Probably the best you can do is all most of us on here can do for our loved ones and support them, protect them, get them whatever help you can, keep them as calm and happy as you can, look out for their health, keep an eye on their safety, and just love them.
     
  13. Vesnina2

    Vesnina2 Registered User

    Oct 8, 2014
    21
    #13 Vesnina2, Jul 17, 2015
    Last edited: Jul 17, 2015
    I am sorry, dear Naomi, it is not easy, but you will find great support
    and thousands of ideas here, in this forum...

    Showing your closeness will help all of you, I believe.
    It is very difficult to understand other people, even the close ones.
    And such situations are more difficult and more challenging.
    But I still believe that it is important to be humble in face of the unknown,
    and to be supportive to the dear ones. They feel then they are not alone,
    and feel better and happier.

    Lots of luck, dear Naomi.
     
  14. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    I think the problem was your use of the word 'cures'. There are treatments that can help some people but there are no cures.
     
  15. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,976
    Suffolk
    With vascular dementia, takings things like aspirin and cholesterol lowering drugs may help, but not everyone can tolerate them. Otherwise, as Saffie said, there is no cure. As progress in this disease is 'stepped' it may seem like there is a slowdown in the downward spiral, but that's all it is.
    As had been said, there are medications to help with side effects when they are needed, but that's all.
     
  16. Vesnina2

    Vesnina2 Registered User

    Oct 8, 2014
    21
    If this was correction of my post, I accept it. Sorry for using the wrong word. Thank you
     
  17. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    333
    rct
    Hi

    Firstly well done for speaking out. We don't realise that just speaking how we feel aloud helps. Not easy but beneficial.

    The reality is that there is no cure as vascular is due to blood supply issues. My dad has dementia that has 2 sets of symptoms..and even though medicated it's not a cure medication is to aid his cognitive thinking side..only 1% but hey we ll take that.

    It depends at what stage your nan was when diagnosed and behavioural changes are common.
    When the brain has a disease like dementia it damages the thinking reason memory numbers logic bit first!. So they're left thinking assessing through the brain part that deals with emotion. Hence things being emotional highly charged and agitated.
    It might be that your nan is a child or teenager or young lady as her memories have faded away. This then could be frightening for her...he's a stranger..or a man not her dad looking after her. He says she's his wife but she thinks she's younger and married a young mam. How frightening it would be to wake up to a stranger.

    There are things the gp can do by way of medications to help ease the agitation. .so please ask them!

    Secondly they need a social services care assessment. Everyone who has a diagnosis by law is entitled to one.
    The carer or carers matter to. They could arrange a break for your gramps ..and also assist you. There are lots of groups out there to help.
    Have your local alzheimers society officer to call.

    I would when your ready read their fact sheet on vascular dementia. The more you know the better. Eventhough it's changeable disease with some.

    You have rights and it's about what your nan you and family need and are entitled to...so keep strong!!

    Join things..choir craft singing for the brain. Etc. Take your nan g dad and yourself. If your nan won't go arrange a sitter and you go!..meet people who also have kids and have a loved one with dementia.

    Miracle cures ..are miracles because they are too good to be true. Food drink right medication will help keep other illnesses away...that ll help.

    Best wishes
     
  18. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    No problem Vesnina. I just wanted to clarify the situation as I thought you probably were talking about treatments. Thank you.:)
     

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