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.

  1. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,400
    East of England
    I really like your post and think you have made a valuable contribution to this difficult subject. I have thought a lot about the what might be the issues raised by illness in a person with dementia. Lots of questions and no easy answers. P.S. I was going to watch it on catch up but I watched Madame Butterfly instead, very therapeutic. I shall watch the Kevin Fong film when I can.
     
  2. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    I recorded and watched in the morning. My husband watched with me, over a coffee we reflected on our life, our experiences. Although there are logic and short term memory issues, long term memories are still good when he is not tired and relaxed.
    I did ask, gently, if there was anything we needed to do or people we needed to see.
    He actually said that no, as we could not do them now. I think he was thinking of my abilities rather than his. He has just bought new walking shoes or rather he asked me to order on line.
    Not sure I will find a Rollator friendly mountain :) oh with and armchairs for naps along the way!
    Xxx
     
  3. Dutchman

    Dutchman Registered User

    May 26, 2017
    367
    Male
    Devon
    Oh boy! First of all bless you for your kind comments. Now this frightening......last night, about 12.00 midnight, I went to another bedroom to get some sleep and then heard my wife walking around so I go and see what’s happening. She’s getting dressed and is planning to go downstairs to do what?? So I say what are you doing? Nothing. This is the frightening bit....I lose my temper and shout I must get some sleep. Nothing. I lose my temper more and grab her arm and squeeze because the red mist is coming down. I let go and suddenly realise it’s so easy to lose it completely and then what? I had to talk to someone about this because it frightens me as I’ve always considered myself a patient person. So there you are...we are capable of anything given the circumstances. This is a bit like the confessional.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,536
    Female
    South coast
    I think our OHs are very similar. Its not easy is it?

    Edit - Ive just read your latest post. Im so very sorry. Ive shouted at OH recently because he keeps going outside and falling. He hasnt hurt himself, but all his clothes needed washing and my tumble dryer has broken. Yesterday he had no clean and dry trousers left. We have both got tired, you and I.I thought about getting some respite at a local convalescent home, but its closed for refurbishment.
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    2,199
    Look, we are not saints, sweetheart. We are driven to extremes. You are a patient person. Tell me, who can help you?
    warmest, keep talking, Geraldine
     
  6. Unhappy15

    Unhappy15 Registered User

    Feb 7, 2015
    130
    Hello Dutchman,
    I have just read your post and felt I must reply.
    I know what the 'red mist' feels like, my husband used to get up and walk around from about 2am every morning, getting shoes and belts out of the wardrobe to go out. Trying to explain that it was the middle of the night was pointless and all that I remember is feeling that I was so tired and wishing it would all end. I have said the most terrible things to him and even thought about killing us both, that is a constant source of shame, but what can you do?
    This stopped when my husband became violent and was sectioned, at that point I took the decision that care was the only answer.
    He is settled and content, I am lonely but I visit him everyday so that is our life now.
    What I am saying Dutchman is please get help as soon as possible, we all understand on TP how easy it is to snap when you are tired and driven to distraction but even respite would give you a much deserved break.
    Please take care and be kind to yourself
    Thinking of you
    Kathy
     
  7. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    Please get on to Social Services, they should have an emergency number explain you are at breaking point and need help now if not sooner.
    They have a duty team and they are responsible if either of you are in any danger they have a duty of care.
    Xxx
     
  8. Rosebush

    Rosebush Registered User

    Apr 2, 2018
    1,478
    Me to Kathy, my husband became violent and is now in a care home, unfortunately I can't visit him every day as the home is too far away, he has been assessed now so I am hoping he can be moved closer as I do not drive and can only afford to go once a week! Lx
     
  9. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    I hope you find a nearer place soon the distance must be so distressing. Xxx
     
  10. Unhappy15

    Unhappy15 Registered User

    Feb 7, 2015
    130
    Hello Rosebush,
    I know how you feel, when my husband was sectioned he was placed in a unit about 40 miles from home, it was the only space available at the time. Luckily he was transferred to a unit near to home after a couple of weeks so that wasn't so bad.
    When the section notice was finished he was assessed and I was told he needed a 'continuing' care package, meaning someone coming in for 15 minutes a day!
    I knew that I could not take care of him at home and after a lot of searching I found a home that met all of his requirements but we are self funding. We are starting the 4th year of care and so far it has cost nearly £170,000, almost all his savings and pensions so what the future holds I try not to think about.
    There really is no care for the carer is there? We are just seen as dispensable yet without us what would it cost the state to cover the care of dementia sufferers.
    I do hope your husband will be moved closer to you so you can visit more.
    Do take care
    Kathy x
     
  11. Lady M

    Lady M Registered User

    Sep 15, 2018
    289
    Female
    Essex
    Hi,
    Yes Idid watch this programme, on catch up at about 4.45am after OH had been up and down loads of times (had fallen previous afternoon requiring Paramedics to lift) so obviously I was up with him each time and finally he was alsleep, of course I wasn’t , so on went my catchup!!
    I found the programme interesting and sincere in its production.
    I frequently remind myself of how I felt after reading ‘In the midst of Life’ by Jennifer Worth ( author of Call the Midwife) she describes how the views on living and dying have radically changed with the rise of modern medicines , modern views of medical professionals, and modern times , whilst the fundamental desire of most people hasn’t changed at all!!!
     
  12. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    I found Jennifer Worth's book wise and sad too. When I had to have a procedure a few years back I took in a witnessed 'living will' as advised by a retired GP friend in the 90s. One nurse try to lecture me, others treated me like a hot potato, I was shunted down the list. The consultant finally came and we reached an agreement.
    I hope the programme will start more conversations. We have now registered with My Decisions. This sets out exactly what intervention would be acceptable.
    There is very little training for end of life care. I watch most things on catch up too.
    I hope your husband is not too restless.
     
  13. Lady M

    Lady M Registered User

    Sep 15, 2018
    289
    Female
    Essex
    Unfortunately, he is! Here I am 2.30 just mopped the bathroom floor. Found him struggling to remove his wet inco pants! He is now backin bed fast asleep!
    I am not, of course.
     
  14. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    #414 AliceA, Jan 27, 2019
    Last edited: Jan 27, 2019
    This is really tough for you. I hope you get some catch up. Some months back I tried some free sleep apps, then the other night I tried OM chanting. It is 6.30 I am just having some quiet time on here before I face the day. Xxx
     
  15. Lady M

    Lady M Registered User

    Sep 15, 2018
    289
    Female
    Essex
    Thank you ! Like many others so glad I found TP.
    Memory nurse on Home Visit tomorrow, so I expect OH in full hosting mode..
    Just another day in Paradise!!
     
  16. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,321
    Female
    South of the Border
    My OH is a life long church chorister - he gave it up a few years ago as he could not fit rehearsals into his new job demands.
    With encouragement, he has now joined a local group and they are very impressed with both his voice and his ability to sight read music.

    My ex husband is now telling my adult children that things 'can't be that bad' if my OH is singing Mozart's Requiem !

    But as you all know on here - things are very bad indeed. This guy who can no longer read a book but can still sight read music - now there is one of the conundrum's of dementia !!
     
  17. AliceA

    AliceA Registered User

    May 27, 2016
    2,417
    X good luck!
     
  18. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    247
    Central Scotland
    My OH, (with FTD) who has been playing drum kit in bands for 60 years, was still playing until last Autumn when he found the palaver of transporting and setting up the full kit too much for him. His Consultant explained that musical ability resides in a different, more primitive, part of the brain, more akin to Muscle Memory. He said that it would be the last faculty to disappear.
     
  19. canary

    canary Registered User

    Feb 25, 2014
    10,536
    Female
    South coast
    Yes, Ive heard that too. Thats why people who cant speak coherently can still sing the words to songs.
     
  20. kindred

    kindred Registered User

    Apr 8, 2018
    2,199
    So true about the slave act and the hours carers work. As I see it, not that long ago we were surrounded by big institutions into which people who had lost their minds were placed (and they were not all bad, the ones I visited as a student were pretty good). Then we had care in the community and they were placed in staffed half way homes, and they were closed and now, in thousands of homes, we are the unpaid staff containing and appeasing people who have lost their minds. And more dementia units are being built, replacing the big institutions ... No, this perspective doesn't help, but I would so love a chance to raise it politically ... Love Kindred.xx
     

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