Doneprezil? Judgement calls?

Discussion in 'I have a partner with dementia' started by Alicenutter, Feb 8, 2016.

  1. Alicenutter

    Alicenutter Registered User

    Aug 29, 2015
    560
    Massachusetts USA
    Hello everybody

    Just to let you know that while my husband STILL has not been formally diagnosed, I finally managed to speak to a neurologist (on-call, on a very difficult Saturday, wonderful man) who used two, no three words, that made a huge difference to me. They were "Poor man" and "Dementia". He also said that my husband should be started on Doneprezil immediately, and that it sounded like Lewy Body dementia to him…So I asked his PCP (GP in the States) who said he would prescribe it right away. I would love to know what others' experience with this drug is.

    Because we had such a difficult day on Saturday (multiple episodes of me not being his wife, quite a lot of hostility on both sides) I actually managed to get good friends involved. Patrick (good friend husband) took my husband Joseph out to lunch and calmed him down, Kathy (good friend wife) took me in and made me make telephone calls until I spoke to the on-call neurologist. It was such a relief to open up to others, and for them to see what Joseph & I are going through. Patrick sat bemused through Joseph's stories about the other women who were making his life a misery. Then we all went to the cinema and out to dinner and had a lovely time.

    Back in LalaLand the next day, but in a much more affectionate atmosphere. I have learnt a lesson in my own limits, and am just started learning lessons in forgiveness…

    I know that others are dealing with much more difficult situations than i am, but I wonder if in some ways this period before formal diagnosis is one of the scariest? I am constantly second-guessing myself, and am having trouble trusting myself. Our children keep reassuring me that I can trust my own judgement, and that really helps.

    Once again, thanks for listening. I listen to you too, and marvel at human frailty and resilience. Trust your own judgement, that's what I say.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,537
    Female
    Scotland
    Alice there are so many stages and changes. The early stages can be scary because the PWD still has capacity to be active and wanting to do their own thing. You on the other hand can see that they can no longer be allowed to take risks because of their poor judgement and decision making. The tug of war can be a nightmare. Over time other issues appear and disappear. I have found that the three days my husband goes to a daycentre allows both of us some breathing space. He gets other company and stimulation and I get a bit of sanity.

    You have started off well by getting friends involved who are obviously caring. Take every bit of help you can get from all concerned whether in terms of appropriate medication or time with your husband.

    Good wishes.
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,481
    Female
    London
  4. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello alicenutter, my hubby was given Donepenzil 4yrs ago when diagnosed with Alzheimers, and possible lewy bodies.
    The change in him was remarkable, he seemed normal, very affectionate, l was so pleased. Life was much improved for 2yrs, then he deteriorated as the Alzheimers got worse, which is what happens as it is a terminal illness. My husband has no mental capacity now but still takes Donepenzil. Hope your hubby continues to improve.☺
     
  5. Lawson58

    Lawson58 Registered User

    This can be a really scary time for you and it is wonderful that you have so much support.

    OH was diagnosed with Alzheimer's almost two years ago and was put on donepezil. He responded very well for a time and was much easier to get along with for a few months. He had some problems with his tummy so his geriatrician switched him over to rivastigmine which took a little while to kick in but was better than the donepezil. He was cooperative for some time but following an upset after Christmas, he has started slipping and has been quite difficult.

    Some people have a better response than others from donepezil and some seem to derive benefit for varying periods so you won't know unless you try it.
     
  6. Beate

    Beate Registered User

    May 21, 2014
    11,481
    Female
    London
    My point still stands: this isn't licensed for Lewy Body so how can the GP prescribe it? They don't even know which form of dementia he has yet!
     
  7. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,662
    Salford
    The OP is in the USA and prescribing Donepezil for LB seems to be a recognised thing to do in the US so A GP in the UK may not be able to prescribe it but a PCP in the US can.
    K
     
  8. Beate

    Beate Registered User

    May 21, 2014
    11,481
    Female
    London
    Oh, right. Good for him then.

    My OH has been on it for 5 years now, no major side effects. He has still deteriorated, but that was to be expected. When he was still able to express opinions, he told me that it made him feel more positive. It's a good thing to give early on. Not sure how much it does in later stages but I've heard it shouldn't be suddenly withdrawn as it could spark a downturn.
     
  9. Alicenutter

    Alicenutter Registered User

    Aug 29, 2015
    560
    Massachusetts USA
    Thank you for all the comments. Donepezil is licensed in the US for LBD, so that is not an issue here. The main thing from my point of view is that a light bulb went on in my head around 3:00 am on Saturday and it said (I know light bulbs don't talk, but bear with me) "My husband needs treatment. Now." Because as distressing as the imposter-wife business is for me, it's a lot worse for him. If this drug does some good, wonderful; if it doesn't at least we're not wasting any more time.
     
  10. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,662
    Salford
    My wife took it for some years but I don't have a scientific clone wife not taking it so there's no real evidence either way. Did it slow down the rate of progression, maybe.
    Did it make her any better, no and there is no claim it can even do that.
    Did it make her any calmer, again no but the Citalopram she was prescribed 6 months later seemed to help a lot more on terms of calming her down.
    Prescriptions in England are a fixed price of about 12USD per item or free if you pre-pay about 150USD as a one off annual fee, then they're all free after you reach 60.
    I figured it couldn't do any harm but I'm not really convinced it did any good either but it didn't cost much and I thought it would be wrong to deprive her of any possible benefits. In the end though AZ always wins until a cure is found.
    My wife didn't start saying I wasn't her husband until after she'd been taking Donepezil for a couple of years, these days I could be anybody, usually I'm her big brother.
    K
     

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