1. Q&A: Looking after yourself as a carer - Friday 25 January, 3-4pm

    As a carer for a person living with dementia, the needs of that person will often come before your own, and this can mean that you don't always look after yourself.

    However, it's important for both you and the person you care for. But how do you do that properly?

    Our next expert Q&A will be on looking after yourself as a carer. It will be hosted by Angelo from our Knowledge Services team, who focuses on wellbeing. He'll be answering your questions on Friday 25 January between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

my partner and I

Discussion in 'I have a partner with dementia' started by passing clouds, Jan 10, 2019.

  1. passing clouds

    passing clouds Registered User

    Jan 10, 2019
    10
    my wife has has short term memory problems for a couple of years, and seems to be increasing albeit slowly
    after a recent CT scan a transitional meningioma was detected but thought to be old and calcified and not immediately of any concern as affecting her brain, but being monitored
    she had a CT scan which showed more clearly other factors pointing to alzheimers dementia and is now being treated with donepezil on a trial basis.
    vascular treatment is also being used to avoid stroke and heart problems.
    if the donepezil can be increased and slows her memory loss after the trial, our consultant has also pointed out that another drug, memantine may well be needed
    i am her husband and carer...
    this is all new to her and definately to me as i dont know what to expect at any time, regarding her health and mental condition
    from time to time i know i will need to ask for some advice and reassurance from the forum
    thanks in advance
    G
     
  2. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,866
    Male
    Hello @passing clouds, you are welcome here and I hope you find the forum to be a friendly and supportive place.

    My wife was diagnosed with Alzheimer's and a significant degree of vascular damage. She is on both Donepezil and Memantine and is doing well on them. My understanding is that these meds don't slow the disease as such, but they enable the maximum use of what capacity is left. Due to this my wife seemed to be brighter when the meds kicked in but she then continued to decline, albeit very slowly.

    Do take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    https://www.alzheimers.org.uk/find-support-near-you

    You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    67,576
    Kent
    It`s good to see you on the Forum @passing clouds and I hope you will find it helpful and supportive.

    Not many of us do or did. There are similarities but a lot depends on the individual.

    Now you have introduced yourself it might be a good idea for you to start your own longer term Thread on either the sub forum I have a partner with dementia so any support you receive will be all in one place.

    https://forum.alzheimers.org.uk/forums/i-have-a-partner-with-dementia.69/
     
  4. passing clouds

    passing clouds Registered User

    Jan 10, 2019
    10
    thanks...
    i am in the right place..
    the item i have been having denial with is the "non cure" aspect is hard to imagine
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    1,872
    welcome! This is a great forum and you will find so many encouraging and knowledgeable friends here. It is hard to watch and wait, but it does sound as though your wife's condition is gradual and that is good. Warmest, Kindred
     
  6. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,866
    Male
    With a bit of luck things will progress at a slow pace and enable both of you to make the best of things.

    My wife and I still enjoy life most of the time. Dementia causes us problems and always remains the elephant in the room but we carry on with our life much as it was before the diagnosis - it's just a bit more tiring and frustrating.

    I am always positive and I hope you can be the same. I have found that acceptance of our new reality helps me to make the most of our present. I don't think about ' past what if's' and don't worry about what is to come. I stay rooted in the present and make the best of it while dealing with problems as they arise.

    The information and support on this site will help both of you.
     
  7. passing clouds

    passing clouds Registered User

    Jan 10, 2019
    10
    my wife (72) has has short term memory problems for a couple of years, and seems to be increasing albeit slowly
    after a recent CT scan a transitional meningioma was detected but thought to be old and calcified and not immediately of any concern as affecting her brain, but being monitored
    she had a CT scan which showed more clearly other factors pointing to alzheimers dementia and is now being treated with donepezil on a trial basis.
    vascular treatment is also being used to avoid stroke and heart problems.
    if the donepezil can be increased and slows her memory loss after the trial, our consultant has also pointed out that another drug, memantine may well be needed
    i am her husband and carer..(76).
    this is all new to her and definately to me as i dont know what to expect at any time, regarding her health and mental condition...i may be in denial but i find it hard to watch and wait...guess its same for all of us
    from time to time i know i will need to ask for some advice and reassurance from the forum
    thanks in advance
    G

    We have volunteered to help with studies by others on our situation. They will visit our home in a week or so to help with gathering data.
     
  8. Beate

    Beate Registered User

    May 21, 2014
    10,916
    Female
    London
  9. passing clouds

    passing clouds Registered User

    Jan 10, 2019
    10
    yes i couldnt find it easily...could i keep this one and delete the other..
    got a bit confused when i tried both partner/carer threads and didnt see my thread..early days, where i hoped it would be and easy to fin
    what do you advise
     
  10. canary

    canary Registered User

    Feb 25, 2014
    7,953
    Female
    South coast
    If you go to the top of this thread you will see under the blue "reply to thread" box the words Watch Thread in blue. If you click on these words you will get a notification sent to you every time someone posts on it. You can also find the thread by hovering over your icon (top right on the blue strip) and clicking on Bookmarks - then going to Watched Threads

    If you havent clicked on watch thread, then you can also find your threads by going to your profile page, click on Postings , scroll down to the bottom and click on All threads started by xxx
     
  11. passing clouds

    passing clouds Registered User

    Jan 10, 2019
    10
    thanks...i have got that now...and have ticked the watch thread
    i want to be able to get any support i can get here....and i suppose give it when time goes on and i learn to cope
    and of course to thank those that reply
    cheers
     
  12. passing clouds

    passing clouds Registered User

    Jan 10, 2019
    10
    thanks to you for your encouragement..
    i know as days, etc go on i will get a feeling for the rate of change...and as you say i do believe it will be slow
    i think i am compressing the suggested signs which take over a period of time into shorter anxiety scenarios
    bless you
     
  13. kindred

    kindred Registered User

    Apr 8, 2018
    1,872
    Oh sweetheart, I totally understand. The earlier stages like this can have so many beautiful moments in them. Please keep anxiety at bay. With warmest wishes, Geraldine aka kindred.
     
  14. Pollyjones

    Pollyjones Registered User

    Jul 30, 2017
    1
    Shropshire
    I am in a similar situation my husband was diagnosed 4 years ago with Alzeimers but refused drugs or help. No problems other than poor memory. At his second assessment he had not noticeably deteriorated and refused the assessment test so he was dismissed under MIL. In the past 18 months he has changed in many ways and I have managed at last to get him to see the Memory Clinic again, I need their help as he progresses on the downhill slide. I, and our sons would like him to try drugs to slow down the deterioration, he is not 68 yet but due to various previous health issues is fighting taking more medication. His assessment is next Tuesday at home so he feels more relaxed. Fingers crossed we get the result of help we need.

    I will let you know how it goes. This is not the beginning of our journey by any means but hopefully we will know exactly what & where we stand in the process. Thankfully he forgets he has the disease but we are not so lucky.
     
  15. passing clouds

    passing clouds Registered User

    Jan 10, 2019
    10
    you must impress if you can the benefits physically and psychologically of taking any type of medication
    my personal experience may be helpful
    in 2011 i was diagnosed with prostate cancer and the consultant said biopsies would be necessary and wanted to set a date. i insisted the biopsies be done immediately and they were done that day, and looked forward to the results so i could get on with whatever needed to be done....my treatment was 19 radiations and 6 years of hormone implants, which may have to be resumed soon.
    my wife is the same pushing for CT and MRI scans and to move forward with drug treatment and all which medicine can offer, it's ones right and shouldn't be thrown away untimely.
    the results in some way will benefit the affected and help those in the future by monitoring results on a national basis. we have embarked on a study now for cardiff university via our local council.
    this isnt brag or boasting...its all one can do for themselves, their families and the greater good, not to acknowledge that holding on to life is what is at stake.
    the problem with alzhiemers as far as i know is unable to be cured and cant be sidelined to try to cure other conditions your husband also is being treated for.
    hope this helps and your husband begins to realise how important his attitude towards taking further drugs changes.
     

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