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feeling very tired and lonely at times

Discussion in 'Younger people with dementia and their carers' started by dedicated doe, Aug 25, 2007.

  1. dedicated doe

    dedicated doe Registered User

    Aug 24, 2007
    47
    wirral merseyside
    some days i feel as if the day will never end and just wish i could get a good nights sleep,when i want to have an early night my husband wants to stay up late and does not want to be alone,he does not like me to be out of sight for long i get lonely at times as it can be difficullt to have a decent conversation about every day things.does anyone have any suggestions please.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,722
    Kent
    Welcome to TP.

    It`s so difficult to reason with people with AD, but I`d tell him straight, you are tired and want to go to bed. You are probably just as emotionally tired, as you are physically tired because caring 24/7 is draining.

    If it`s conversation you are missing, will `virtual conversation` do? If you keep posting here, you`ll find a great group of very supportive people, who understand completely what you are living with.

    There seem to be more and more members who are living with Younger people with Alzheimers. I don`t know whether it`s better diagnosis, or a very sad decline in health.

    If you want support, look at the support section as well as this one. If you want some lighthearted banter, go to the Tea Room.

    Take care and keep posting. xx
     
  3. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Going on experience with Dad, this is not going to necessarily help, mind you, every case is different...

    But it sounds to me as if your husband is going through one of the stages that seems to be the most stressful about this disease...and for that reason he will be constantly in your pocket and wanting attention, following you around and basically driving you crazy.

    All I can say is that your instinct is right, you need an escape...or again from experience I know this stage is capable of stressing the carer out to breaking point. So if there is some way you can arrange a respite carer so you can get away I highly recommend it, or some family members to visit and be there for him while you pop out for a while and get some sanity.

    And never forget, this too in time will pass....
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi dedicated doe, welcome to TP.

    I know the feeling well, lack of sleep makes it so difficult to cope.

    Loneliness is another problem I know well, and TP is my lifeline. Most days, it's the only conversation I have, because my husband has lost all language. Please come and chat to us as often as you like, ther's usually someone here. Have you found Tea Room yet?, that's where we go to relax, and you'd be made most welcome.

    You also need to get out and talk to people. Do you have carers in to give you some respite? If not, you should try to arrange it, it's so important for carers not to have to spend all day alone.

    Post again, and let us know more about yourself, if you feel like it.

    Love,
     
  5. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    My husband was doing the same not that long ago. I found it worrying danger wise when in the kitchen cooking/ cutting up food/ draining pots etc, there was nearly a few accidents, as he would reach out as well. Some times my son would have to pull him away and that caused him to get aggitated I used to wish i had eyes on the back of my head. Its a nightmare. You constantly have to be alert and aware they are behind you. I couldn't win ether way.
    Another thing is if you are out watch. My husband would suddenly turn, if there was other people about he would pick one then start following them. Its a tiring problem and drains you.
    Today is our wedding aniversary 29years and he now isn't aware of it. He is in hospital and i'm sitting at home on my own. This illness is so cruel to all.
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,722
    Kent
    I`m sorry you are having such a lonely and unhappy wedding anniversary chip. It goes from bad to worse, doesn`t it.

    Love xx
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Chip, I'm sorry you're having such a miserable anniversary.

    If it's any consolation, (I know it's not!), ours was just as miserable, and John's still at home. He has no idea that I'm his wife, let alon what an anniversary is.

    It certainly is cruel.

    Love,
     
  8. Grommit

    Grommit Registered User

    Apr 26, 2006
    2,127
    Doncaster
    dedicated doe I do know how you feel and I wish there was something I could do to help.

    You sound in need of a bunch of flowers, a nice cup of tea and a jolly good natter.

    Consider it all virtually available on the TP site and winging its way to you.
     
  9. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    One virtual flower coming up for you Doe... (if I don't mess up trying to "attach" it!)
    Sorry, I couldn't find a whole bunch.
     

    Attached Files:

  10. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    #10 TinaT, Aug 26, 2007
    Last edited: Aug 26, 2007
    Dear Chip , it's our 39th wedding aniversary next week and just like you, I will be visiting my husband at the hospital. He will probably drop off to sleep most of the time but at least I can hold his hand and give him a kiss and a cuddle. That will have to do. Very best wishes TinaT
     
  11. cris

    cris Registered User

    Aug 23, 2006
    326
    Chelmsford
    #11 cris, Aug 26, 2007
    Last edited: Aug 26, 2007
    Dedicated Doe. I know how you feel, I have had the same. Telling that you are tired is very unlikely to work, I think. It may sound mean but what I did a couple of times, after making sure all was well and safe, was to go into the spare room, and kinda of hide / bury myself under the covers, laying flat, no light, door closed, not shut. Once I was out of the equation things calmed down and Susan got into bed, she was already dressed for it and we both had a fair sleep. Again I suppose it depends on your other half. Conversation !!!!! yes well, I talk to myself, sometimes my replies are silly other times I'm rolling in the aisle.
    cris
     
  12. dedicated doe

    dedicated doe Registered User

    Aug 24, 2007
    47
    wirral merseyside
    Thankyou for the comments

    I would like to say thanks for your welcome,and it feels good to know that i am not alone,we have three children at home and they all have learning difficulties i try to explain in easy terms why dad behaves the way he does at times this illness seems so unfair,on one of his good days it is like the old dad and husband the next well i am sure you know,he has started in a very good day care centre but i still find it hard to relax i suppose it will take time and i am most grateful to have found this site thankyou once again.
     
  13. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    My heart goes out to you. It is never easy trying to explain to children what is happening especially when you (in my case) don't have any prior expereince of the disease. What age are yours. Ours or 9 & 7.
    Take care and keep posting. I have found this site a Godsend. I felt lost and alone before and now I have other in similar situations to chat to.
    Jackie
    xx
     
  14. annesharlie

    annesharlie Registered User

    Hi dedicated doe

    Sounds like such a hard time for you. Everyone is right about the fact that things are much harder if you don't get a proper sleep. Are you able to connect with friends at all, or get any kind of a break?

    I have been considering having a student come and lodge with us when things are harder, just to have another person around. Perhaps instead of board and lodging costs, they could watch Ron for half an hour or so while I walked or nipped into town. Anyway, thankfully I'm not at that stage yet. Perhaps others may think this is an option.
     
  15. dedicated doe

    dedicated doe Registered User

    Aug 24, 2007
    47
    wirral merseyside
    HI Again A LOT OF EFFORT GIVEN TODAY

    Hope you do not mind me sharing today with you all, it has been a hard day to keep a happy balance within the family,my son has his 22nd birthday and from the moment my husband woke this morning he has been having an off day! my son was really excited when he opened his pressies,and my husband Dave just about broke a smile it was so sad to watch as before his illness he got more excited than the children,its been tough smiling all day for my birthday boy and i am now getting worried that the children will keep wanting me to be happy all the time because their dad is changing day to day,when he is at the day centre things are alittle more relaxed, but Dave feels lost when i am not with him so becomes more clingy when he is home but i love him and the children so much you just learn to take each day as it comes,thanks for listening to me.
     
  16. KMJ

    KMJ Registered User

    Jan 6, 2006
    1
    Preston
    similar experience

    I know I should be calm and accepting, but I have made a special effort all day to be kind and helpful to my husband who was diagnosed with AD 5 yrs ago .
    I have just got him ready and into bed and sat down with a glass of wine . I'm furious with him for peeing on the settee half an hour before bedtime while was in the loo in the next room. Now I'm ashamed of myself for even telling him about it. Like everyone else I'm tired and not sleeping well. Friends, neighbours and family all tell me to look after myself, but I feel like shouting "How the hell can I do that?" Any ideas of how to bite the bullet and ask his brothers to stay with him overnight so I could sleep undisturbed?
     
  17. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia


    Dear KMJ,
    Welcome to Talking Point. So many of us find it a life saver - I hope you and Doe will too.

    Don't be ashamed of your anger - none of us can be "perfect" all the time. It is very human to break down, especially when we lack sleep.

    You sound like you DEFINITELY need respite care. Whether this comes from your
    brothers inlaw or through an organisation, I think you need it NOW!!

    I'm no help in suggesting how to organise respite because I live in Australia, but many TP members can help you with information.

    If you get on with your brothers in law, can you just be honest and say you are starting to fall apart through lack of sleep? Ask if they could please arrange to stay with you / have your hubby stay with them for a few nights, so you can sleep? Many people are happy to help but don't know what to do. Also, sometimes people feel they are offending you if they offer to help.

    Only you know what the situation is with the brothers in law - if you feel it wouldn't work to ask them, please seek some respite from an organisation.

    Thinking of you and sending caring wishes your way.
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,722
    Kent
    Dear KMJ

    Just bite that bullet and ask them. Tell them you are going to fall apart if you don`t get some help soon, and if they can`t offer, you`ll have to look elsewhere.

    Five years is a very long time to go without a break. I don`t know how you`ve managed it.

    Ask for help before it`s too late and let us know how you get on.

    love xx
     
  19. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,722
    Kent
    Dear Doe, this is what TP is here for, to share with people who really do understand the effort it takes, to make a simple thing like a birthday, a happy family occasion when there`as Alzheimers in the house.

    Keep posting.

    Love xx
     
  20. ROSEANN

    ROSEANN Registered User

    Oct 1, 2006
    909
    staffordshire
    Hi Chip
    Seems to be the week for anniversaries.
    I too had my anniversary this week [39 years] and even though my husband looked at the cards it did not register with him.
    I had thought he had gone downbank in the last few weeks and this showed me how much as we always celebrated our special day.
    Next year I will be 60 and we will have been married for 40 years but going by this year I am not expecting much,but at least I still have him with me.
    So to all with an anniversary this week I send you my love.
    Roseann
     

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