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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. Musical john

    Musical john New member

    Jan 28, 2018
    1
    Hi I,m Musical john. I have worked as a careworker alongside people with dementia for many years. This has being alongside developing my music practice. I am currently working with an artist to develop video-soundscapes to help people with dementia and their carers.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,008
    N Ireland
    Hello @Musical john, welcome to TP. Your work sounds interesting and I wish you every success with it.
     
  3. nimue

    nimue New member

    Jan 29, 2018
    2
    Hi my mum has had vascular dementia for 4 years but prior to this she had a massive brain hemorrhage 12 years ago she died 3 times but they save each time sounds horrible but I wished they hadn't shes never been mum since and now its awful. I'm the only surviving child and dad is mums only carer and he is 87 in poor health but a strong man in mind. A lot falls to me and I am made to feel guilty for my short falls nearly ever day. I have a husband. 3 children and grandchildren but struggle to fit everyone in. There are days I just wish my parents were no longer here and I feel so guilty that I feel like that, they did their best but I cannot say they were good parents, trouble is there is no one else he will allow to help. Mum is falling every day now even with the simmer she is tries to talk but we only understand the odd word and when we dont get it she waves her arms about and gets really angry I understand its frustrating for her, she cannot write as the words make not sense, she used to be so clever its so sad. Dad thinks he is doing the right thing for her and you cat make him see he is not. Doctors dont check on mum and dementia nurses only come if I ring them and they wont be there without me being there as dad gets crossed and anyway its a waste of their time as he dont listen. Nurse just says I am walking on eggs shells and there is nothing they can do. He has a heart condition and asbestosis but is stable. I try and call in most days to check they are ok but im starting to hate it it taking over my life and effecting my health. I gave up my job as I couldn't fit it all in. I dont know why I am writing this think Im just so lost
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    Hello @nimue and welcome to Talking Point.
    Im so very sorry to hear about your parents and the affect that it is having on you. Please, please dont feel guilty, you can only do what you can do, although it sounds like your dad wants you to do more than you can. I am assuming that your dad doesnt have any help like carers or respite - has he refused them and thinks you will do everything?

    You need to look after your own health - you are important too. There will be a crisis soon and then your mum will get the care that she needs, but until then you must make it plain what you can and (more importantly) what you cannot do - and stick to it. Perhaps you need to step back a bit as well for your own health. Try and encourage your dad to get others to help.

    I would also recommend that you contact your parents GP - perhaps write a letter - so that they are aware of your concerns.
    Please keep posting on here, there is lots of support available. You might want to post in the main "I care for someone with dementia" section as more people will see it there
     
  5. Smiffy73

    Smiffy73 Registered User

    Jan 29, 2018
    28
    Hi, I'm a carer for my Step Dad who is 79 & was diagnosed with Vascular Dementia just over 3yrs ago. He lives alone since my mum died suddenly 14mths ago. Up until recently he has been doing quite well but over the last 4 months we have noticed a considerable decline. I'm not sure he's looking after himself as well as he was with regards to showering & changing clothes. He won't get his hair cut & won't go to any social groups even though he says he is lonely. I'm struggling to know what to do to help him now & was wondering if we were reaching the time when he needs to go into care. How do you know when that time comes?
     
  6. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,749
    Female
    Kent
    Hello, @Smiffy73 ...how good you are to be caring for your step dad...I’m so sorry to hear that you’ve lost your mum. To answer your question, a lot of people say that when you start to wonder if it is time to think about a care home...the time has come. I’m wondering though, if an intermediate position might be right. Has your step dad had an assessment by Social Services? It could be that he could attend a day centre, many provide transport too, or that carers could come in and supervise showering etc. Only you know whether you think that would be enough...but it might be an idea to get a professional opinion on what might be needed.
     
  7. Smiffy73

    Smiffy73 Registered User

    Jan 29, 2018
    28
    Hi, thanks for your reply. He has carers come in every morning to put his cream on (he has psoriasis), they were helping him shower as well at the start but then he started showering before they got there & now that's progressed to him not showering but being dressed before they come & so therefore won't get in the shower. He's also now wearing the same clothes for days, sometimes weeks for his joggers. He's quite unsteady on his feet & also has a diagnosis of COPD so his breathing is quite bad. He won't go out anywhere, not even to my house anymore so support groups are out of the question. It's so hard to help someone who won't accept any solution to the issues they say bother them.
     
  8. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,749
    Female
    Kent
    It’s very hard when help,won’t be accepted...but it doesn’t have to be just your problem. Could you ask for his needs to be reassessed? It sounds as if more help is needed (I know, it might not be accepted!) and social services have a duty of care to vulnerable adults.
     
  9. Brookeden

    Brookeden Registered User

    Apr 6, 2014
    3
    Female
    Hi
    I am kinda new here, I joined before when it was about my late dad having early onset dementia mixed or frontal lobal, he also had an infarct. Anyway I have come back as I may or may not have early onset dementia I dont know if the dr meant I have it or not. The results ofmmynhead ct scan were frontal lobe atrophy, does that mean I have or I think she said it will progress to, what does that mean about now? As I am saying this im thinking perhaps there is no answer ...it is unknown. There never seemed to be a definitive title to what kind of dementia my dad had. I suppose it doesnt really matter apart from the likely hod of what to expect and how soon to expect it. Can anyone help? Long story short does having frontal lobe atrophy mean I have dementia or could it be a side effect of diazepam? Thanks in advance for any help or advice.
     
  10. SandraB

    SandraB New member

    Jan 29, 2018
    2
    Hi
    I have joined as my dad has a Alzheimer’s diagnosis and I am looking for advice around care.
     
  11. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,529
    Ireland
    Welcome SandraB. I'm sure you'll find the forum has lots to offer. Have a browse around and join in any of the ongoing discussions, and when you are ready, you can start a thread of your own in the "I care for a person with dementia" section. Just click the blue "Start new thread" button.
     
  12. Lou16

    Lou16 New member

    Jan 24, 2018
    81
    Female
    #92 Lou16, Jan 29, 2018
    Last edited by a moderator: Jan 31, 2018
    Hi there
    I am sorry to here of your husbands diognoses. I was 14 when my grandma was diognosed, I’ve been her carer since then along with my Mum. I am 16 now she sadly passed away 3 weeks ago. My grandma although could be nasty and would shout at times she never got physically aggressive. She never swore before her dementia and never swore during which is what they say to expect. But every person is different, it’s such a cruel, digrading disease. I’ve been in a few dementia care homes and have had the privilege to form bonds with many dementia sufferers they r just amazing, courageous and inspirational people. They’ve made me want to fight for dementia rights. I can’t say that he won’t get aggressive but I can’t say he will. I have seen many aggressive dementia sufferers but they arnt like that all the time and they can’t help it. Sometimes the fights have been over the littlest thing that me and you would just turn a blind eye too.

    I hope I’ve helped in some way.

    Lou x
     
  13. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,529
    Ireland
    Welcome, @Brookeden - although I suppose that should be "welcome back"!
    Maybe if you post your query in the "Memory Concerns and Seeking Diagnosis" section, someone might be better able to help. Also, the team on the National Dementia Helpline are very knowledgeable and experienced. Perhaps you would like to talk things through with them? The number is: 03002221122
     
  14. Lou16

    Lou16 New member

    Jan 24, 2018
    81
    Female
    #94 Lou16, Jan 29, 2018
    Last edited by a moderator: Jan 31, 2018
    Hello there

    My grandma was diognosed with Vascular dementia with onset Alzheimer’s when I was 14, I am now 16 and sadly she passed away 3 weeks ago. I became her carer along with my Mum, unfortunately we had to put her into a care Home as we couldn’t give her the 24 hr care that she needed as we had to obviously get some sleep during the night but my grandma hardly ever slept. How she got on during the day I’ll never know. The guilt we felt when she had to go into a home was horrendous and the home was absolutely scandalous to the point where my grandmas social worker said we have to remove her from the home before it becomes fatal. Which we did and we found a much nicer home they were absolutely amazing right up until the end. We still feel very guilty now, we wish we could’ve done it. But you can’t get rid of your guilt, you can only work through it, I always use to say to my my if my grandma did something that was very out there or if we saw another resident do or say something, If you didn’t laugh, you’d cry.

    I hope I’ve helped in some way.

    Lou x
     
  15. Soulfriend

    Soulfriend New member

    Jan 30, 2018
    1
    Hello everybody . I have signed up so I can learn from others about dementia . My dear friend is recently diagnosed with Dementia
     
  16. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hello @Soulfriend
    a warm welcome to TP
    your friend is fortunate to have you looking out for them
    there's loads of support, sympathy and good suggestions on offer here, so settle in, have a mooch around and start your own thread when you're ready
     
  17. MetalKnee16

    MetalKnee16 New member

    Jan 30, 2018
    5
    Hi. I am concerned about my elderly parents. They are 92 and 89 respectively. They still live in their own home but are about 75 miles away. They are fiercely independent and reckon they are coping well. They are coping, but only just. I doubt they will cope with another winter, especially a bad one. We are trying to persuade them to move. Dad thinks sheltered accommodation would work but I think it is too late for that. Mum hates cooking and is forgetting how to do stuff. She won't go to a doctor as she says, he won't be able to do anything. I am at a loss to know-how to handle this. Dad believes that if he goes into a care home, he will be locked in. He still likes to go for a walk every day. Any suggestions?
     
  18. Lou16

    Lou16 New member

    Jan 24, 2018
    81
    Female
    Hi there
    Sorry to hear your story so far. Have a look around at care homes near you and check the CQC reports. Then if u do go to look at one just turn up or say your coming but don’t give them a time then you can catch them off guard and you’ll know wether they r good enough then. Also if u look at how other residents look and are spoken too and if it smells clean if it’s tidy etc. Also how the carers/seniors or head of units speak you’ll know wether they know what they’re talking about or not

    Hope this helps
    Lou x
     
  19. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    #99 Shedrech, Jan 30, 2018
    Last edited: Jan 30, 2018
    hello @MetalKnee16
    a warm welcome to TP
    it's quite a theme, I'm afraid, that we as children feel that our parent/s are needing some support and care, but the parent themselves doesn't agree and doesn't want to have anything change, as they are 'doing just fine on their own'
    you're doing pretty well if your dad is considering sheltered accommodation, as often there's a complete refusal to consider any move - so might it be worth going ahead with organising such a move for them, so that they are near you and it's easier for you to support and intervene - it would at least put your mind more at rest - and give you a chance to see how they really are day to day
    then, when they are both close by, it will also be more straight forward to get some support in place for them - contact their Local Authority Adult Services for an assessment of the care needs of each of them; they have a right to this
    any chance of suggesting a cleaner who just happens to be happy to cook or warm up pre-prepared meals for them too?
    you imply that neither a diagnosis - though that's secondary if they have capacity to make their own decisions and can agree to a move and sign any documents needed (while you actually do all the background work for them, so they don't have to be anxious about it)
    you can write to their GP and explain any changes in your mum that you have noticed and outline your concerns - some then invite the person to a ' routine well woman' check up for 'everyone their age' and include a memory test - or has your mum had her flu jab?
    do you have LPAs in place for them as these will give you legal authority to support them in managing their affairs and to take over if that becomes necessary
    of course finance can be an issue in any move, so I appreciate this may not be a simple solution (are there ever any?) - and it can be worth moving into a care home sooner rather than later - it's not necessarily the case that your dad wouldn't be able to go out for a walk; that's something to bring up with each home you consider
    there's lots of help and useful suggestions on offer here, so do keep posting - maybe start a thread of your own to get more response
    maybe here
    https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/
     
  20. Cant do anything right

    Jan 30, 2018
    3
    Thank you for being here.

    I'm an only child of a mum who I have known has had autzheimers for many years now, and dad who has been in constant denial of it. They live in Scotland and I live in England, and despite having managed to obtain joint welfare and financial poa for them both, I only finally got her diagnosed in November when my dad admitted he could no longer cope with the fact she had no idea who he was.
    On good days, good hours he is still in denial.
    My mum is in total denial that there is anything wrong with her and the word can't be said anywhere near her.
    Despite seeing small improvements with the hallucinagenics since beginning quetiapine, I know that neither of them are coping. We have a CPN attend every two weeks, have begun with an OT visiting too, and I have finally got my dad to engage with a carers network for support.
    My husband and I know that my dad is actually making things worse for my mum. He won't wear his hearing aid, gets easily frustrated and agitatated and we are all reliant upon him for all of her care and wellbeing. He won't accept any back up at all from me and my husband and has ruled out any form of move for either of them.

    I spend life doing things covertly and in secret, with almost no one to talk to or flag things up to, because no one in the family wants to hear or know or have their own caring and health requirements. They have no friends or social life other than themselves, but thrive when my husband and I come up, before my dad makes it painfully clear that he requires no help and doesn't want us anywhere near.

    I'm visiting them now every month and trying as far as I can to provide wrap around to the CPN, OT and the careers netork facilitation with my dad. But of course, no one, especially them, tells me anything and my ability to do anything is entirely dependent upon them allowing me to.

    I'm up with them at the moment for 48hours and have never felt more lonely scared or isolated in my life with two of the most precious people in my life.
    It's really good to be able to read others. Thank you for being there.
     
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