1. BANKS

    BANKS Registered User

    Hello, like so many of the threads I have viewed today, I too am a new member. I am really trying not to let the panic feeling, which keeps getting to my throat before I think or do something to suppress the longing I have to scream! My dear, sweet Dad has dementia and also has multiple myeloma - which is a form of Leukemia. He is 87, and while the comments may be well intentioned, I cannot bear to hear or see anyone give me THE look which, interpreted, says "well, he IS 87". Although not officially diagnosed (what's with the NHS?), he is displaying all the symptoms. Little to no short-term memory - doesn't recognize his children or my Mum - wants to go home (which, when asked, is his childhood home) - panics if my Mum (his carer) is gone too long - gets agitated around noisy gatherings - can go for hours without speaking. The list goes on. And here comes the kicker for me and my sister.........we both live in the U.S. and to say we feel helpless, guilty and every other negative emotion, is an understatement. I'm scared for many reasons. I don't know where to go, who to see/call or email to get some sound advice. My Mum needs help. If only for a day a week. He doesn't need a sitter - but it would be nice to know my Mum could have a break without the worry of my Dad getting panicked because of her absence. Why won't his doctor give him Aricept (Sp?) - he's been asked and all we get is his chuckling (yes, that's right) reply which is that he doesn't know what good it would do. I, regrettably in this situation, am the "calm" one in the family. It takes quite a lot to "set me off"........and my visit to this dr. on my recent visit home, I was the same.....now that I'm back here, I wish I'd grabbed him by the throat and asked him to prescribe something that would slow down my Dad's dementia. What can I do? What can someone recommend I do to get my parents affairs in order so that the gov't cannot take everything they have away from them in the event my Dad has to be put in a home down the road? Where can I find a relief carer for my Mum? Has anyone heard of Aricept and does it in fact slow down the dementia? I need help - I am trying everyday to remain calm and focused - it's so difficult. My Dad represents every meaning of the word "gentleman".......... please help me in any way any of you can........please!
     
  2. Charlie

    Charlie Registered User

    Apr 1, 2003
    161
    Hi Banks,

    well you've come to the right place. Lots of help and support here!

    First thing I'd do is start looking at the fantastic factsheets on the main Alzheimers Site. They really have spent a lot of time on these and they are so clear and concise.
    http://www.alzheimers.org.uk/Facts_about_dementia/factsheets.htm

    There is one on Aricept and loads of information to help you deal with the NHS. Also look at the EPA factsheet. If your dads GP is not taking things seriously enough then you have a right to complain, but so far I have been very impressed with the help provided by the NHS with my dad who has had Alzheimers for two years. You may want to contact your his local branch of the Alz society who will help with your concerns.

    He too is often described as a gentleman and keeps his dignity intact. We spend as much time as possible with dad now and although Alz makes lifes practicly problematic, he still has quality in life.

    Hopefully others on the list can help you with any of the unanswered questions. You are not alone!!!

    Kind Regards
    Charlie
     
  3. alison

    alison Registered User

    Aug 25, 2003
    21
    gravesend, kent
    Aricept and family affairs

    Hi there.

    What a situation for you and your sister. Firstly, regarding Aricept. My mum has been on it for the last 4 years and I would hope that it has slowed the progression down. We have a very good gp who referred her for help qite early on. Apparently, you have to be at a certain stage of the disease for it to be beneficial. She had to undergo alot of tests before it was prescribed. She has to go to the clinic every 6 months for a memory test. If they think its no longer benefitting her, she will be taken off it as it is so expensive apparently. She is due to go for a check this month. I have been told that when she is taken off it, deterioration will be fast. So I am dreading that day. I do know that in certain areas of the country, it's not available on the NHS. Patients have to pay. Hope that helps.

    As far your parent's affairs. My dad cares for my mum. They are both in their late 70's and own their own home. I am their only child. We went to a solicitors a few years back and instigated a power of attourney in my favour, so that when and if either of them becomes incapable of managing their own affairs, I can take over. Also, we have recently seen a solicitor. Basically, where they both owned the house jointly, we have done what is called a severed tenancy. Dad owns half. Mum owns half. If Mum has to go into a home and Dad is still living in the house, he can't be made to sell the house anyway. But if something happens to Dad and mum is left on her own and goes into care, they can only go after half of the value of the house. Dads half would pass to me basically. They had to change their wills to that effect. Age Concern were very helpful and pointed us in the direction of local solicitors who deal with that sort of thing. They have a very good website, which is how I got in touch with them. The method we used is the only legal way of avoiding nursing home fees. Age Concern could send you some information which is very informative. Spells out all the options and reasons why certain things to protect assets can't be done. It's all wrong isn't it when your parents have worked to provide for t hemselves and have it all taken away from them. So try the age concern website, where I think you can also access helpsheets. Also as far as help, I think there are links to local Alzheimers societys through this site. Our local one is brilliant. They can allocate befrienders to sufferers and carers. My mum goes to a day centre twice a week, which gives dad a break. They can also arrange respite care. Hope thats of help. If you want any further detail about the legal process, come back to me and I will tell you more precisely. But do try the Age Concern site. They were excellent.
     
  4. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    To continue the excellant advice already given, have a look at the folllowing link to contact your Parents local branch of the Society

    http://www.alzheimers.org.uk/Your_local_branch/Regions_and_Branches/region_nw.htm

    Apart from answering all of the other questions you have, with the added knowledge of the policies in that area, if they are not able to offer a sitting service they will know who can.
    Consider also respite, your Mum should be entitled to 6 weeks respite at a reduced rate, so that she can have a break knowing that your dad is cared for in a suitable care home. He may not be too happy about the idea, but your Mum can only benefit from the break.
    All of your questions can also be addressed by the local social services dept. get them involved if they are not already.
    As Charlie says, keep in touch, and we will endeavour to help each other.
     
  5. charliebravo

    charliebravo Registered User

    Feb 8, 2006
    1
    London
    What you feel and what you are going through are very normal - no matter how engulfing your emotions are. As has been stated before, you are entitled to get your father 6 weeks respite care for your mother which is absolutely vital to her wellbeing. It is just so important to care for the carer too. My sister lives in Tokyo and we cared for our father in London - she was feeling just as you are and came over when she could - she runs her own business and has 2 children so not easy to take them out of school. We continually reassured her that we could run the show this end. If you do get time to come over for a long weekend, make sure you are in contact with the social services contact before you come and make an appointment to see her - then you can get phone numbers etc from her and give her yours - I had many a call when on holiday for reassurance. Also, keep on top of what they are doing and follow up on what they say they will do - a bit of pressure works well with everyone. Do not assume what they have said they will do.
     
  6. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Hi,
    My Mom is also on Aricept and Namenda. It has helped tremendously and we feel has lengthened the time before we'll have to put her in a nursing home. Stay after the doctor to get that if you can. We have also been told that if she is taken off of the medication, she will drop like a rock and not come back up.

    Take care and know everyone here understands what your going thorugh to one extent or another.
    Debbie
     
  7. Loiner

    Loiner Registered User

    Oct 29, 2005
    73
    Leeds, UK
    U do what u think is right. There's a lot of help on here, but don't take any **** from any "professional". Family is what matters and respite is a good tool for giving relief from the stress
    hugs and hope it goes well

    David
     

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