1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Husband recently diagnosed with dementia

Discussion in 'I have a partner with dementia' started by jannie19, Sep 3, 2015.

  1. jannie19

    jannie19 Registered User

    Aug 4, 2015
    9
    My husband was diagnosed with Alzheimers earlier this year, so I am very new to all of this, is there any way of knowing what stage a person is at or knowing when to ask about strange things that happen. I know the local Alzheimers society have groups, but its difficult to get them as I have still been working full time. The professionals just seem to leave you until something serious happens.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,596
    Kent
    Hello jannie

    I`m afraid it`s what happens and you will be expected to ask for help when the help is needed.

    I hope you`ll get plenty of help here, there are many who can share experiences and information. Just post what you need to know and someone should either be able to answer or point you in the right direction.

    It`s all the more difficult for those of you still working.
     
  3. jannie19

    jannie19 Registered User

    Aug 4, 2015
    9
    Thank you - I know there is a lot I need to find out about and it has been very difficult, until I realised that it wasn't my husband but the side effects of donepezil that included acute paranoia that made my husband act so strangely. He has improved a lot since stopping them, but it makes very scared about the future.:eek:
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,783
    Salford
    Hi Jannie, welcome to TP
    I've put a link to the "stages" factsheet below.
    There's a saying on here "when you've seen one person with Alzheimer's, you've seen one person with Alzheimer's" although there a lot of similarities no two people are the same each of us have a different story.
    I think you've realised the help available unless you're really struggling is zero, unless you're lucky enough to live in an area where there is a local group.
    There are a number of things you'll need to consider, broadly speaking you'll need to; get a Power of Attorney for his health and finances so you can take care of the money and speak up on his behalf with doctors, you need to get everything in your name utility bills, insurance ect these companies don't like dealing with anyone but the account holder, you need to plan for the future financially and a million other things.
    You might consider downsizing your home for the day when you might be doing everything big houses and big gardens do take a lot more work.
    Last but by no means least you have to thing about yourself, friends and family may drift away as time goes by and so there is a risk you can become isolated.
    We're all here for you so just ask away if there's anything you want talk about.
    K

    http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=133
     
  5. jannie19

    jannie19 Registered User

    Aug 4, 2015
    9
     
  6. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    welcome to TP Jannie
     
  7. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,425
    Male
    Cornwall
    Hi there is no easy answers everyone with dementia are different some go down hill quickly other can maintain a good quality of life for several years with little or no decline at all this is the same with careers Al have different views , my advice is not to worry because there is no cure like other illness
     
  8. malcolmpr

    malcolmpr Registered User

    Aug 4, 2013
    29
    barnsley england
    clinical trials

    hi Jannie
    From your post I assume your husband is in the early stages of dementia. There is some light at the end of the tunnel for all of us if the trials my wife is involved in prove to be the breakthrough.
    Only patients with mild to moderate alzheimers will be accepted would you be interested in participating ?
     
  9. Chrismitch

    Chrismitch Registered User

    Jun 23, 2011
    127
    Which trial is that Malcolm?
     
  10. Crayone

    Crayone Registered User

    Sep 4, 2015
    1
    Representative Payee

    Concerning finances, at some time in the future, you may need to investigate getting a representative payee account for your husband. I've heard of Alzheimer's people buying new cars they couldn't even drive and in generally lacking the good judgment when it comes to spending their money. With my mother I already had a POA, but there was a form the bank gave me for the doctor to sign and list her Alzheimer's diagnosis. I then took the form to the government agency who evaluated and sent me a approval letter. They authorized me to open a new account in her name over which I, not her, would have control. This kept her from giving money away and allowed me to buy the things for her that she needed. The money was not mine but strictly to be used for her and there is annual accounting for what is spent. She had developed paranoia and tended to bond quickly with people she should not have trusted. I struggled for several years before I found out about this--it made a world of difference!
     
  11. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,783
    Salford
    I think this maybe the case in the USA but UK rules are different, we don't have "representative payee accounts" but as you say taking control of the finances is important.
    K
     
  12. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,425
    Male
    Cornwall
    You can set up joint accounts problem solved
     
  13. malcolmpr

    malcolmpr Registered User

    Aug 4, 2013
    29
    barnsley england
    Clinical trial

    The trial my wife is on is thru the Royal College London she attends Birmingham monthly
    The name of the trial is ELAD the trial drug is liraglutide
    Malcolm
     
  14. Mal2

    Mal2 Registered User

    Oct 14, 2014
    2,968
    Enfield
    Have you noticed any improved signs with your wife on Liraglutide?

    I heard of this 2 years ago, my husband is diabetic. I spoke to the dementia clinic doctor who told me my husband could go on it, and still use the Aricept. When I asked my doctor I was told there is no medical evidence it was any help, and wouldn't give it to him, although, all it meant was, he would come off his diabetic meds and have the Liraglutide, which is a diabetic drug already approved.

    I was disappointed at her reaction, especially when I had an e-mail from alzh.assoc asking if my husband was in early/med stage, he could go on the trial. How can doctors deny him at least trying it. When I first heard of it, it was by the diabetic assoc, and they said it showed help for people in the later stages. If it does come to anything, he could have had the benefit starting 2 years ago.
     
  15. bobbybutton

    bobbybutton Registered User

    Sep 12, 2015
    1
    Bobbybutton

    I feel for you as my husband was diagnosed a year ago with dementia. Like you I am new to all of this and have recently "buried my head in the sand" Yes doctors seem to just shove it off. The comment I got from my gp "you have an interesting time ahead of you"
    Gee thanks!

    What I would like advice on is how to stay patient and not lose your temper, because frankly, I do and then feel terribly guilty afterwards.
     
  16. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Bobbybutton, that's the one thing we all suffer from at times. Impatience. It helps to have others come in to supervise things when it becomes harder to cope alone. I've heard of people helping with house cleaning; personal hygiene care for the dementia sufferer; day care centres for the both of you to go to. I believe some even provide a midday meal. You need these things to get you through the loneliness of it all, as you do, as a carer, tend to lose a lot of ability to go out and leave your spouse as the dementia progresses; so asking about, and even setting up at least some of these things is worth looking into for your own sake.

    Always come here to ask whatever you need help with, and how to go about getting it. There's always someone who knows how it's done.

    All the very best to you :)
     
  17. oliviajuliette

    oliviajuliette Registered User

    Jul 16, 2014
    27
    Hello bobbybutton, I have no advice for you but I do know how you feel. I came onto the site today as I am also feeling guilty as I am tending to be very short tempered with my husband. He was diagnosed 2 and half years ago and cannot take any medication due to a heart condition. I work 2 full days a week and tend to be very tired after a ten hour shift. When I get in all I want to do is have a cup of tea have a bath make tea and relax. Instead there is the bed to make, washing up to do and a hundred other things to do, I have lost my husband who would have made a cup of tea for me but now is unable to do so. Sorry I seem to be complaining to you and you yourself need help like myself, I will sign off now. All I can say is you are not alone, it helps me to know this hope it does for you too.
     
  18. malcolmpr

    malcolmpr Registered User

    Aug 4, 2013
    29
    barnsley england
    Hi sorry for not getting back to you earlier I dont go on talking point very often it depresses me
    My wife has been on the trial for 6 months now and over the last month her alzheimers has got worse
    Which means to me she is on a placebo or the liraglutide doesnt work I will not know until the end of the trial
    I got exactly the same response from my GP when I asked if he would prescribe the drug when the trial has finished his reply was its not registered for alzhiemers and I woul be struck off. I got a inclination from the Prof in charge in Birmingham that he might we will see.
    I will be so annoyed if after injecting my wife for 365 days with a dummy drug she is not given the opportunity to try the real thing
     
  19. Mal2

    Mal2 Registered User

    Oct 14, 2014
    2,968
    Enfield
    #19 Mal2, Sep 19, 2015
    Last edited: Sep 19, 2015
    How disappointing for you, I am so sorry. I know how you feel. My husband is diabetic so all the doctor had to do was change his diabetic meds, as this is already an approved diabetic drug. If it didn't work at least we tried, and it still controlled his diabetes. It makes one feel so helpless. Still, perhaps it will be a success and then it will be available to us all. Who knows, miracles do happen, we just have to keep hoping. Chin up. In the meantime, why don't you join our chat line 'tea room' listed under 'Positives', we just have chats about anything we want, some quite funny anecdotes, it does cheer us up. Have a look, you may find you like it.. Good luck. M
     
  20. kazb

    kazb Registered User

    Aug 1, 2015
    71
    trials

    Hi I would be interested
     

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