1. vickib30

    vickib30 New member

    Jun 20, 2018
    9
    Hi everyone can i speak to anyone on here. My grandad isnt that bad at the moment .But its all getting to me he has had vascular dementia and alzheimers mid stages for 5 year now. Me my brother look after him and live with him my aunt is up every weekend to help too. make his meals and gove him his tablets. Im just really scared about what is to come next. I just feel bad as im getting down about it all. We all work full time too.
     
  2. Baz22

    Baz22 Registered User

    Dec 30, 2017
    46
    Male
    South West
    Sorry but no good news, it only gets worse. my mother has alzheimers and vascular dementia Stage 6. After a long struggle we had to put her in a care home. Care in the Home does not really exist where I live despite the publicity. Care home has been brilliant but we are having to find the fees. Start researching it now for your own future well being.
     
  3. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    354
    The key thing is not too leave things too late. Whilst every single case of a dementia will be different, due to both circumstances and the specific dementia in question, dealing with a loved one at home can be as hard a task as one might imagine. I am quite sure that everyone who has lived with this situation will agree without reservation, that caring for someone with dementia is a genuine revelation. What one thinks at the start, as being something manageable, logical, foreseeable, can transform into a 'nightmare'. This sounds melodramatic and there will be many who have lived with dementia in care, who have not necessarily encountered extreme trauma or disturbing behaviour, but one needs to be prepared for the features of decline with this disease, some of which can draw upon every single ounce of your available mental and physical arsenal.

    One to one care at home can be, eventually impossible. Clearly if the caring role is being.
    shared, that can help Try not to anticipate the worst, despite what has been stated here. I express my own story, which is in all truth. Yours will be yours and yours alone. But once things
    appear to be 'getting on top of you', that is the time to consider the future and Care beyond that
    which takes place at home There are no pat answers, nor space for light-heartedness at this
    stage. Strange as it might seem, the latter can come about later on.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    11,104
    Female
    South coast
    Hello @vickib30

    Try and take it one day at a time. Yes, his dementia will progress, but nobody knows how or when. Take every offer of help that you can. Do you have carers coming in to help? Maybe day care while you are working would be good. Perhaps it is time to get an updated needs assessment by Social Services.
     
  5. Tin

    Tin Registered User

    May 18, 2014
    4,815
    UK
    Hello, like most of use you and your brother took on this task because you love your grandfather and would do anything to keep him safe and happy and not wanting him to be alone. Unfortunately as the dementia worsens you will have to face some difficult decisions.

    No one can do this kind of caring without feeling frightened for the future and each day feeling tired and drained of any emotion. I am not sure what advice to give you, except that if you have not already done so, then talk to your family, let them know how you are feeling and that maybe you could carry on with a little more support. If you feel that you are suffering some form of depression, then go see your own gp. Find out if there is an Admiral nurse in your area, they are rare but your gp will be able to tell you if one is working with your local council. Admiral nurses are an asset to have on your side, their knowledge and understanding of this illness is priceless.

    Most importantly, take care of yourself
     
  6. Blondee

    Blondee Registered User

    May 12, 2018
    105
    Hello vickib30
    It doesn’t sound as if you have posted before so welcome to Talking Point. You will find so much support and advice on here so keep posting.
    I’m sure you know but dementia only goes one way but it helps to have as much procedural stuff in place as possible. You’re doing a great job just now for your grandad but the first thing you might want to do is consult a lawyer about getting a Power of Attorney in place. You want to go for a joint financial/welfare one. That means that you are able right away to look after your grandads financial affairs. It also means that as his dementia progresses then a medical professional will be able to decide that he is unable to look after his own affairs and that activates his welfare powers. It may seem a long way away but believe me you will be thankful you have this organised. If you have these things in place you can concentrate on taking care of your grandad without uneccesary worry.
    I don’t know where you work but you might want to investigate if you can be registered with your employer as a carer.if you then have to leave unexpectedly they will know why. I was fortunate with my employer but I understand it everyone is.
    Although it may seem premature you might want to start researching care homes. That doesn’t mean your grandad will be admitted imminently but the need for care can happen more or less overnight. In my case I was researching homes for respite but within a week it became apparent that my mum needed full time care.
    Look at homes, see what you like and look at how near they are and most important get your grandads name down on the inevitable waiting lists.
    Perhaps most important is - engage with social services. It makes it much easier.
    These are all practical things which make dealing with the emotional much easier. I know that you have asked what to expect but when you are dealing with dementia no one knows except as I said earlier it’s a one way street and that way is down. However it isn’t all bad. Sometimes you can look for and find the fun in it. My mum, when living at home, used to cover her face with her hands when I spoke to my Amazon Echo and say “you’re so rotten, she’s doing her best” It’s those times which keep us going.
    Good luck you are doing a great job.
    Keep posting as time goes on.
     
  7. vickib30

    vickib30 New member

    Jun 20, 2018
    9
    Hi thankyou amd thanks to all that has commented so far. My aunt has power of aturney already she went with my grandad a while back and got it. I think its all just getting on top of me and everything i think i do need to speak with my manager tho and explain everything to him then they know. Its just really upsetting his moods also. An saying things like iv had enough when we just ask him not to do something or to wate a second thanks fir listening x
     
  8. vickib30

    vickib30 New member

    Jun 20, 2018
    9
    thankyou amd thanks to all that has commented so far. My aunt has power of aturney already she went with my grandad a while back and got it. I think its all just getting on top of meand everything i think i do need to speak with my manager tho and explain everything to him then they know. Its just really upsetting his moods also. An saying things like iv had enough when we just ask him not to do something or to wate a secondthanks fir listening x
     
  9. vickib30

    vickib30 New member

    Jun 20, 2018
    9
    I just feel bad for feeling sad as i feel like im feeling sorry fir myself and dont want to tell my family as i dont know what theyal say x
     
  10. Tin

    Tin Registered User

    May 18, 2014
    4,815
    UK
    If you think that your home situation is affecting your job, then talk to your manager, don't put it off, you may find a lot of understanding there. I understand that you feel unable to talk to your family, but you can admit to feeling sad to them. Your Aunt must be feeling sad too. If you want to continue caring for your grandfather, then now is the time to just open up to them. It is just finding the courage to take that first step or those first words. How is your brother coping with all this?
     
  11. vickib30

    vickib30 New member

    Jun 20, 2018
    9
     
  12. vickib30

    vickib30 New member

    Jun 20, 2018
    9
    Thanks, i will try to speak to then he seems to ve coping ok x
     
  13. Tin

    Tin Registered User

    May 18, 2014
    4,815
    UK
    How do you know? he is probably thinking the same about you.. Why not start by talking to him. Now I am not saying get all emotional with him, some families don't do that, mine certainly don't, mine tend to suffer in silence, but I offload to them and they at least listen with no judgement.
     
  14. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    Hi @vickib30 and welcome to TP

    You and your brother and aunt are doing a wonderful thing in caring for your grandfather. However....the nature of his condition means that he will very likely need full time care at some point. I imagine you are fairly young (?30) and if you are not very careful you will find that your whole life is dominated by this caring role. That is not fair on you or on anyone else, unless you absolutely choose it.

    I think you need some options. Has your grandfather had a care needs assessment? And have you had a carers assessment? I hope so....but if not, now is the time to ask for these. Get in touch with your local council adult social care dept. and ask for a needs assessment. This should result in some support for you and some help for your grandfather.

    Don't feel bad about feeling sad! It's the most natural reaction in the world. You're under a lot of pressure and you need support from others.....but they won't know this unless you tell them.

    I wish you all the best and hope to see you posting here again.

    Love
    Lindy xx
     

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