1. sandollar54

    sandollar54 Registered User

    Oct 29, 2005
    3
    Kent
    :) Hi there.

    I've spent the last 2 days looking at this great site and getting some ideas to help me. I'm just beginning the journey that so many of you are on and at the moment I feel rather helpless and pathetic. (got through lots of tissues this week!)

    I'm an only child (51!) from a family with only a few relatives. I'm married with 3 children (2 at university and 1 at secondary school) and live 300 miles away from my parents. (I'm in Kent, they're in Liverpool)

    On Thursday my mum(76) and dad(83) went to see a doctor at the local psych hospital were they were told that dad has early stages AD and has been prescribed Aricept, starting with 10mg for a month then a review. His CT scan shows no abnormal growths but there is shrinkage. He had an initial consultation about 3 months ago but I don't know if any MMSE type tests were done, though mum said they asked dad lots of questions!! (I've only found out about MMSE through this site)

    What I want to find out is:

    What am I entitled to know from medical profession?

    What are my parents entitled to know (dad is perfectly lucid most of the time and is still driving around his local area to church and the shops)?

    Does anyone have any knowledge about Aricept and Ebixa and if they can be prescribed together ?

    Has anyone used supplements such as gingko biloba and Vit E. Can they be taken together and with Aricept ?

    Is there anyone living in the Mersey Health Authority area who's experienced dealing with the health services there and what the quality of care is like?

    I don't want to press my mum for info at the moment as I think she's feeling very fragile and bewildered. She has 2 artificial hips and walks with a stick but still plays a bit of bowls and does most of the driving. She says she needs help on how to handle dad. She feels she responds to him in a way that makes him angry and he's started "snapping" at her. She describes him as sometimes being like a petulant child that can't have his own way!

    My dad has several long term medical probs. When he was in his 40's he fell and fractured his skull which has left him with deafness and tinnitus in one ear. He also had lung cancer surgery in his 30's and survives on one lung which leaves him susceptible to respiratory probs so he also has an inhaler. Maybe the head trauma is responsible for the AD?

    In his working life he travelled around the world for his company and had quite a busy life. Now he gets up late, reads the paper from end to end and looks at the finance world on teletext. (All of this is annoying to my mum cos she says she can't get him moving to go anywhere or do anything). He often stays up til 1 or 2 looking at teletext.

    When he does jobs around the house he takes forever and forgets what he's doing, often getting sidetracked and starting something else. He takes little exercise as there is a busy road near their house and on the narrow pavements he feels that he's losing his balance. He has recently bought an exercise bike which is in the garage and will often say he's going for a bike ride to Bootle - though mum says he often doesn't stay there very long!

    Anyway thanks for letting me have a place to share with others what I'm thinking at the moment. Any advice or comments would be most appreciated
    :)
     
  2. KarenC

    KarenC Registered User

    Jun 2, 2005
    122
    Los Angeles, USA
    #2 KarenC, Oct 30, 2005
    Last edited: Oct 30, 2005
    Welcome!

    Since I don't live in the U.K. I can't advise you as to the rules there as to what the doctors should tell you and/or your parents.

    My mom was on both Exelon and Exiba (Memantine) at the same time for a while. As I understand it, Exelon and Aricept are fairly similar; my mom was not able to tolerate Aricept but had no ill effects from Exelon. I would expect Aricept and Exiba would be OK together. I believe she was also recommended to be on a fairly high dose of Vitamin E at the same time. It is a good idea to ask a doctor's advice about long-term use of any supplements, especially when the patient is also taking prescription medications, but I suspect that both gingko and Vitamin E should be OK along with the presription "memory" drugs.

    Again, not being local (at all!) I can't give you any specifics, but I think it's good you are looking into social services for your parents. Maybe it is a good thing that your mother recognizes that she needs help with your father -- you don't need to sell her on the idea that she can't do it all alone. You can focus on helping arrange help.

    I'm an only child and both my parents were children, by the way ... and I do not have kids myself. Talk about small family! :) As you may pick up from posts here, there are pros and cons to being the only child in this situation: sometimes siblings work together and spread the responsibility around; sometimes the child doing the most for the aging parents finds other relatives just getting in the way.

    Karen

    Whoops! Edited because I got muddled ... it was Exelon, not Aricept, that my mom was taking at the same time as Exiba.
     
  3. sandollar54

    sandollar54 Registered User

    Oct 29, 2005
    3
    Kent
    :) Thanks KarenC for a quick reply. I've certainly taken note of your mums experiences with Exelon and Exiba. I'm certainly going to try and find out more about these 2 treatments and whether they are available together here. Though I suspect cost and availability may also play a part as well as suitability for a combined treatment.

    Also will suggest that my mum asks the docs about using gingko and Vit E supplements. I did manage to get dad to start taking a suppliment called Actimind about 10 months ago but I'm not sure if he's still on them .
    I more I try to decide how to help mum and dad with this the more questions keep forming.

    What should I tell the kids? I'm not very good at imparting potentially upsetting news.

    My eldest (20) is a psychology student and is actually at uni about an hour away from her grandparents. She got quite upset when I told her of the suspected problem a few weeks ago. I stupidly thought she'd find it easy to understand as a psych student, forgetting that she's quite a fragile character herself - and the conversation was on the phone! But she knew her grandad had been for some tests and wanted to know if he was ok and I'm a twit for saying the truth and thinking about the consequences afterwards!! So I haven't said anything to the other 2 because I don't want to say things the wrong way and upset them.

    Also I'm a major "blubber" and cry at the slightest thing. I'm sure I'm going to burst into tears the moment I see my parents, talk to the kids or anyone else connected with AD. I've certainly shed a few while looking at this site.

    Anyway its nice to know there's other people to sound off to. Just hope I don't sound like a complete wimp!!
    Cheers :)
     
  4. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    This disease sux

    Sandollar if it is any reassurance my dad was on Vitamin E and ginko at the same time as his aricept, I think he was also on Ebixa with the Vitamin E and ginko, I also suspect he was on all four together but am not 100% sure that his aricept wasn't stopped before he began the Ebixa. At one stage he was on so many alternative supplements as well as his AD medication we almost needed a suitcase for all the tablets! :p

    All you have to do when considering mixing different medicines is to consult your Dad's doctor. I too am in a different country but what I would do if I were you is next time your Dad and Mum visit his specialist (I would assume he has one) I would attend with my mother (this is what I did) and also pre-arrange with your mother to tell the doctor that she doesn't want any of this information to be held back and would appreciate it if he answered any questions you may have from time to time, as it will be easier for you to help out if you know what is going on. Seeing as your mother is frail as well this would be best for all concerned I feel. However, it is a big responsibility to get this deeply involved, as children we often don't have any choice, we couldn't live with ourselves otherwise, but when it all gets too hard recognise that you are human and you may need to leave things to the professionals.

    On telling your kids, I don't think you can avoid them being upset, but I would tell them as soon as possible being ready to be there for them (who's there for you though? Hope you have your own support network, perhaps your husband, or come on here and let it all out). There is no way to avoid the pain of this diagnosis. However tell them that you were worried about how they would take it but also tell them you thought it was necessary for them to know now because it is extremely important for them to grab these moments while your father is still fairly well, and tell him all the things they want to now, and remember this person now. The same goes for you and your mother.

    I know he might be frustrating already, but try to appreciate him now. I wish my father could still read the financials! I wish my father could still talk and argue! I miss my father being a right so and so! Your mother also needs to know that there is probably noone who has been through this who hasn't felt that whatever they do is wrong, and that they get anger and mean words from their loved one for trying their best, it is not her, it is not him, it is the disease. The best way to avoid the anger is not to fight the disease, but this is very hard to do because you don't want them to give in to it. Try to let the medication do the fighting (when dad got this aricept was only very very new and there was no ebixa, medication has improved immensely since just 6 years ago and can be very good at holding the disease at bay) and you guys do the loving.

    He isn't trying not because he doesn't want to, he's not trying because it has already beaten him in these things and he gets angry when pushed because he has to face the fact that he is beaten and because trying can confuse him further. He also may not try because the disease can bring apathy, again that is due to the control it has on his brain, both physically and psychologically. So if you have to try and get him to do things, do so, but then when he gets angry let it go and try another tack. There is an ancient Chinese philosophy called Daoism/Taoism where you need to not fight your enemy but use it's power to get the upper hand. Your Dad likes to read the financials, just sit there and read them beside him (or at least pretend to) and soak up just being with him, in a situation in which he doesn't feel pressured. Your enemy the disease wanted you to fight him, take pleasure in the fact that you beat it and both you and your Dad enjoyed each other's company despite what the disease wanted.

    Your mum is not confused or doing the wrong things when she says he acts like a petulant child, this is again what the disease can do. Selfish, self absorbed, mean and hurtful, just like a child can be who hasn't had years of training in self-control and recognising the importance of not hurting others. This can be the most shocking, it sounds like your Dad was a very independent man in the past, strong and capable thats what my Dad was like too, but even he the strongest man in the world (a daughter's view) could not beat this disease and it reduced him to the behaviours of a 'petulant child'. Your mum will no doubt have a lot of trouble coming to terms with this, I think the older you are the harder it is to accept this. It didn't matter how many times I pointed out to mum that it wasn't Dad's fault it was the disease, no matter how much she could see that what I said was true and logical, her heart overrode the logic and she was angry at Dad for giving in and no longer being the 'man' in the house. Your Mum and Dad may need someone like you to come in and diffuse the situation at times or if you too are unable to be objective about it, perhaps one of your children or a friend will step in.

    Anyway I can sit here and give advice for hours on end, but don't want to swamp you. Anytime you need help feel free to Private message me, or post a thread.
     
  5. carol

    carol Registered User

    Jun 24, 2004
    196
    Surrey/Hampshire
    Hello, Welcome

    My mother in law aged 83, diagnosed 7 years ago with alzheimers disease, has been on Aricept for several years, she has recently been prescribed Ebixa as well. Aricept is usually prescribed for mild to moderate alzheimers, and Ebixa for mid to late alzheimers. She is prescribed full dose of both drugs, and they are both on the NHS, although when she first started on Aricept they were paid for privately. Her last MMSE score was 10/11 with a lot of help from the consultant. Her next review is in November.

    Mother in law attends day centre 3 days a week, which gives her some stimulation, and every morning and evening care staff come to bathe and dress her, or get her ready for bed, otherwise she would sleep in her clothes all the time. My father in law is almost 86 and I feel it is all getting too much for him, she can get very aggressive and moody with him, and will not allow him to deal with any personal issues. It is a bit of a nightmare really. We are at the moment trying to organise some respite, but he really doesn't want to do it.

    The best thing that my husband and I did was to join the local Alz. group, we meet every month and have made some lovely friends, we get to meet and talk to local SS, CPN's etc. and this has been a big help.

    Carol
     
  6. sandollar54

    sandollar54 Registered User

    Oct 29, 2005
    3
    Kent
    :) Dear JC and Carol thanks so much for your support and positive suggestions, I'm getting some great ideas that I hadn't really had time to think out for myself.

    I know I would love to be there when they go for dad's next assessment - but dad is a proud and protective person I dont want him to feel less of a person because I'm there (only child daddies girl - even though I'm 51!!) I must at least try to for everyones sake. I feel more positive about tackling the docs about combined therapy knowing others have had it.

    I agree about telling the kids sooner rather than later as they must be given the chance to come to terms with what the next months/years will bring.

    Also I think mum would get alot from a support group so I'm going to see what's available in their area. I'm going up to Liverpool next week as my daughter has a hospital appointment in Chester for some day surgery (more anxiety!). So I need to be strong to support them all - better get another box of hankies and do the "blubbing " before I get there. At least she'll give us something else to think about and take all our minds off AD for a little while.

    All I can say is a heartfelt thanks and wish you both a happy, spooky Halloween!! :)
     
  7. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Dear Sandollar

    Welcome to the TP family.

    The beginning of the Alzheimer/Dementia journey is very difficult as is the middle and the end (have been through it all).

    Please come and share your feelings here, it will take some of the stress off you to let off steam and make you feel less alone on this difficult path. Someone will always be in a similar situation to you or have answers to your queries and help with your fears. You're not alone.
     
  8. carol

    carol Registered User

    Jun 24, 2004
    196
    Surrey/Hampshire
    Dear Sandollar,

    If you joined your local support group, I am sure there will be others with parents and inlaws who are trying to glean as much info. as possible on the behalf of the person that suffers with alzheimers. That way like us, you will feel that you are doing something positive to help your Mum and Dad, the carers at the group always have an answer for each problem that you present them with, and also the professionals are a huge source of information which you can tap into.

    After 7 years, it is only recently that my father in law has allowed my husand (his son) to be present at the assessments, and that was on the advice of the local CPN, elderly people quite often sit and accept what is said, and never question anything, my father in law can't get out of the assessment quick enough, whereas my husband asks lots of questions, I am sure my mother in law would never have been given the chance of combined aricept and ebixa had my husband not asked, as at a previous meeting there was talk of stopping the aricept, and once again it is down to the local support group that speak about these such problems.

    Good luck.

    Carol
     
  9. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Sandollar, take a look at fact sheet 515, its about telling kids. It is so hard when you are far away, (not so easy just round the corner come to that!) But if you can give your Mum support on the phone and maybe visit when you can, perhaps she will be able to get some help sorted out. If not for now, then for the future. Try to get her in touch with her local Alz support group. They can help enormously in pointing her in the right direction and telling it like it is. If you could manage to go to see the medics with her, they would see you were tackling things as a family, if you ring up as a daughter, they may well refuse to discuss things with you I'm afraid. Please keep posting and let us know how you all are, love She. XX
     

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