1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August 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.

Two years to get this bad. What now?

Discussion in 'I have a partner with dementia' started by AL60, Nov 29, 2016.

  1. Alicenutter

    Alicenutter Registered User

    Aug 29, 2015
    560
    Massachusetts USA
    I am, Mary, I am. My father's family were from Read, near Clitheroe. I haven't lived in the UK for....oh my goodness, nearly thirty years. France for 27 years, running a business and raising children there, and now Massachusetts, my husband's home state. He was diagnosed with FTD last year and is now in a Memory Care residence.


    Sent from my iPhone using Talking Point
     
  2. Alicenutter

    Alicenutter Registered User

    Aug 29, 2015
    560
    Massachusetts USA
    Second reply: what about you? How do YOU know about Alice Nutter? You're the first person ever to pick up on 'y forum name...I'm intrigued.


    Sent from my iPhone using Talking Point
     
  3. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    ...what's in a name?

    You do realise that we will all be googling your name. I had not made the connection... Pendle Hill is a lovely place... despite the historic connotations!!:D:D:D:D
     
  4. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi. I can't help but feel that I am coming to the end of my tether. If just once, she could say thanks for being there, thanks for caring, thanks for trying. Instead it's thanks for nothing. Sorry for being so negative but it's been one of those weeks, then why single out thisweek. There don't seem to be any good weeks any more. Good grief, I'm grumpy tonight. It's allowed, I know.
    And I complain about her grumpiness, perhaps it's catching. Seriously though, I'm wondering how much more I can take. No matter what I say she seems to have a habit of turning it around into something bad or wrong or worse. Arguing is totally pointless. I know I need a bit of a break and our visiting nurse has put things in motion to arrange a sitter a couple of times a week. I'm waiting on that to happen soon. But we don't need any help, we certainly don't want anyone coming here, do We? Actually, yes, I do. My wife seems incapable of understanding the needs of others, she seems incapable of understanding her own needs at the moment so it would appear that I don't have a cat in hells chance of her having any understanding of mine. It isn't up for any discussion either. I think that's one of the things I miss, conversation. At work it was the general banter of the workplace, at home it used to be just general talk about anything and everything, family, friends, news, just about anything. Now, nothing. I know it isn't her fault. But if just once we could have a laugh and joke about something it would be so much easier for me to cope. Well I think once again I've downloaded quite enough for one night. It's now ten minutes into a new day and time I went to sleep, I need all my strength to get through another day. Algoodnight.
     
  5. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,050
    Merseyside
    AL I think the loss of empathy & understanding in a relationship is so hard to get your head around.
    I'm glad you'll have sitters in place soon to enable you to get out & about.
     
  6. Casbow

    Casbow Registered User

    Sep 3, 2013
    988
    Colchester
    Hello Al. Oh I am sorry that you are feeling so low. It is awful when the days are that bad you cannot drag yourself up out of a bad place. I certainly know what you mean about lack of conversation. It is as lonely as not having anyone there. Worse really, because when our PWD is horrible to us and only says awful things we feel so angry and unhappy because nothing we do is appreciated. You really need this sitter that's being arranged. You never know your wife might actually take to the person and be happy for a change herself. (Once she gets used to it.!) Do you have any family or friends that visit you now and then. Sometimes someone just popping in for a cup of tea can make you feel better. I don't see our eldest son and family much as they live in North London. Youngest son and family about 10 minutes by car so they try to call in once a week and will come round if I need help. Also have a couple of friends that call in most weeks. It does help. They are very patient listening to my constant rabbiting. I find I talk too much when i get the chance. I hope things soon get better than they are. Keep posting and moan as much as you like. We don't mind.xx
     
  7. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi again. I'd really like to post on here tonight about the excellent time we had today. However, . Actually it wasn't too bad, but, excellent, let's not get too carried away. We went to the supermarket this morning, we were running low on essentials. Our youngest daughter came with us, my wife went around the store 'helping ' her to get her shopping, leaving me to quietly get our provisions. Magic, it's a long time since I enjoyed a food shop. then this afternoon the sun shone, allowing me to spend some time outdoors. The day has had its moments of frustration but compared to some days, it went rather well. My youngest daughter still lives at home and I know she's finding the changes in her mum hard to cope with. I wouldn't ask her outright to look after her mum for a morning or afternoon but if she ever says, "Would you like me to take mum shopping for an hour or two ?", I never say no. My sister in law also lives around the corner, she visits a couple of times a week and I must admit, I look forward to those visits, it's surprising how my wife's behaviour improves when other people call round. So, all in all, not too bad a day. Let's see what tomorrow brings, maybe another one like today, here's hoping. Al
     
  8. dancer12

    dancer12 Registered User

    Jan 9, 2017
    451
    Mississauga
    Glad to hear things are better. Her not saying thanks doesn't mean she doesn't appreciate what you do for her, it's because she's comfortable enough with you not to. It's difficult at times. Extremely difficult.

    THANKS for sharing.
    :)
     
  9. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi again. We had the nurse from the clinic visiting today. She's had a word with my wife about the importance of taking her medication. My wife listens and takes heed of the warnings of the risks of not taking it. Then why, whenever I happen to ask if she's taken it do I get,
    "It's nothing to do with you" or, "it's mine not yours, I'll take it when I need to, mind your own". Etc, etc. The joys of trying to be a carer. The medication in question is rivastigmine. I believe it's used in the treatment of alzheimers. My wife has been diagnosed with vascular dementia. No history of stroke or heart problems, not even hypertension. I get the impression they are trying this medication as though they are treating a mixed dementia, although nothing showed up on the scan for the amyloid count. Anyway, that's where we're up to.
    My wife is quite looking forward to tomorrow. She's always had an interest in gardening and I've tried to keep that interest going. It's meant that I've had to learn what many of the garden plants are called as I'm constantly being asked what's this one or that. I've surprised myself sometimes anyway, tomorrow the new greenhouse arrives. Every day for the last month it's been , "When does the greenhouse come", then every day this week I've had "is it tomorrow the greenhouse arrives " . Well it finally is tomorrow. If it can revive some interest in her one time favorite pastime then it can't be all bad can it. Of course I'll have to help out, discreetly putting actual compost in the pots so any seeds may have just a slight chance of growingas long as she's happy , what else matters . Thank you for being there. Al
     
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,236
    Female
    Dundee
  11. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi, Izzy, goods morning. I didn't realise you could get it in patch form. The nurse is coming to visit again next Wednesday, I'll mention it to her, thanks again, Al.
     
  12. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,236
    Female
    Dundee
    You're welcome! I hope it works for him. P


    Sent from my iPhone using Talking Point
     
  13. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi. Why do dementia sufferers want to push all the wrong buttons when it comes to carers. Or is it just me. I have mentioned more than once that I need a break. I love my wife. But all the time , no matter what I do or say it's never right or never enough. Once more , I have had enough. Sometimes I think I'm winning, I'm getting somewhere, .just now I realise, I'm kidding myself. The frustration of trying to explain things over and over . I know the score , I'm losing. But she was the clever one , not me, and that in many ways is making things even harder. I am now trying to take charge, and have been for some time. . That is being resisted , I'm seeing as being interfering . I will never win . But that will not stop me from trying. I had no intention of posting tonight. But I feel drawn to share my feelings with others. It does help. And I know that I'm not alone. There are many others reading this going through the same thing, some signed in and others just interested or worried and looking for answers. The ****** of dementia. Up until a few years ago, to me dementia was just a memory thing. If only I knew. It affects everything about a person. I now feel like I'm living with a stranger, not one I particularly like. But here is am , doing my best and to be perfectly honest there are times when I could do a lot better but I'm only human and I have my limitations. As I said earlier I had no intention of posting tonight, but here is am and here it is, all I have to do now is press submit. Thank you, Al.
     
  14. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    371
    Female
    Basingstoke, Hampshire
    AL60, it's good for you to keep posting. Sometimes nobody comments, but we are listening, and sometimes we have no answers. The main thing is for you to come on and let it out.
     
  15. dancer12

    dancer12 Registered User

    Jan 9, 2017
    451
    Mississauga
    Good Morning/Afternoon/Evening or everything in between:

    Don't know what time it is in other countries so I figure I'd have everybody covered. I totally agree with jenniferjean, keep posting, someone is always paying attention, listening and feeling the exact same way as you. Power of the pen or in this case the keyboard. Just taking some time out from my lawn mower repairs as my husband so graciously decided to put our lawn mower away for winter last fall, as it didn't fit in our shed he proceeded to remove parts to make it fit and laughed at me all day as I attempted to put it back together. Maybe the lawn mower fairy will come and fix it for me.

    You do need a break, but sometimes its more stressful to leave the premises for a few
    hours, it's hard leaving them alone. Could you maybe set up a room for yourself inside your home and lock the door behind you and do something you enjoy doing & distressing at the same time. You'd still be home in case she needs you. It would be your home away from home. As long as she doesn't get into mischief

    Keep posting & keep sharing. Your posts are helping someone somewhere and your wife appreciates you more than you realize.

    My lawn mower awaits.
     
  16. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi once again. And once again, a blank screen and nothing else to say that hasn't been said already. I've certainly no intention of stopping posting. But I'm finding it harder as time goes on. I'm really finding things getting more difficult as each passing day goes by. I feel as though I'm living with a stranger, occasionally my wife calls by, but her visits are getting less frequent. Another gloomy post coming up i hear you say. Well it's not all gloom and doom. Though for the life of me I find it impossible to pick anything good out of the last few days. Nothing is right, nothing is do is right and certainly nothing I say is ever right. She's making out that I'm a bad carer, I do nothing for her, if anything she does turns out bad, it's also my fault. Many of you reading this will know what it's like. Many more of you will have been through this phase, at least I hope it's a phase, and more still will be looking and reading and thinking, that could be me soon. Well, the good thing about TP is you really can let it out on here, no one will judge, call it an e-shoulder to cry on. Tonight, it was netflix, it was the wrong one, it wouldn't play, I need a new tablet. No matter how many times I set it up for her she'd complain it was the wrong one, switch it off then complain it wasn't working. That's just an example of life now. It's impossible to put in words everything that niggles or annoys. Many of the things that happen, if I were to put it down here you would say, so what, that's nothing. I agree, many of the things that happen are trivial. But when it's all day, and every day, that's different. Otherwise I wouldn't be lying here, in the dark , half asleep, headache, stressed and really looking forward to tomorrow, (not). I appear to have run out of things to write, not done so bad, had a bit of a rant now it's time to go Al. Ps. Hope you've managed to fix your lawn mower Dancer, the first cut of the year is always the hardest, that's what I find anyway, Al. .
     
  17. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,050
    Merseyside
    I hope you managed to get a full night's sleep Al.
     
  18. Casbow

    Casbow Registered User

    Sep 3, 2013
    988
    Colchester
    Oh Al I do feel for you. I really hope this is a phase. My husband is to far gone to be like that with me. Thank goodness he was never like that. It must be so awful. To be moaned at all the time is soul destroying. So sorry. Hope it changes for the better soon. Perhaps medication would help her mood. Has she been to the Doctor.xxx
     
  19. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi. I went to the Dr's yesterday. She too asked if I was sleeping OK. The answer was yes. At the present time I'm managing a good six or seven hours. What I don't like is waking up. Within seconds reality sets in and all I can think is what am I in for today. The Dr also asked if I thought I was depressed. My answer to that was, I don't fully understand what depression is so I wouldn't know. I talk of my wife as though she was two people. The one I've known for forty plus years, then the other one who is proving so hard to get on with. Well, I too am two people, the one people see , the happy go lucky one, nothing ever gets to him, he can cope with anything type. Then there's the other me, more snappy go lucky, whose finding it hard to get by. Probably the dr can see through the veneer, you don't have to scratch too hard to get through to the real me.
    I wouldn't normally post at this time of the morning but the thoughts and words were there, it seemed a shame to waste them. Got to go now, duty calls, or someone's calling. Alps. My wife does have regular Dr visits, but flatly refuses to take any medication other than the rivastigmine, and to get her to take that is a task in itself. Really must go this time. Thanks for being there. Al
     
  20. Quakeroat1

    Quakeroat1 Registered User

    Jan 1, 2017
    80
    Scarborough
    Hi Al 60
    I have read your honest and open appraisals on TP for the last few months and I'm quite touched by your ability to understand the workings of this dreadful disease.
    I was diagnosed last May with Vascular Dementia with some Altzimers and although I still have much insight into my life since dementia there's much that would differ from my partners opinions so I know there's a lot wrong.
    I'm working towards a positive lifestyle with the help of my partner and daughter...but sometimes I slip backwards and can feel the difference between letting go and trusting my loved ones to thinking I'm not as bad as they are saying I am.
    My partner reminds me of certain films when everyone cooked up madness and convincingly makes a person believe it. So we laugh for a while and because I'm laughing I don't believe they really are trying to cook it up. But what about when the day comes when I believe it's them not me ....what will become of me and my loved ones then.
    I can only stay in partial reality as that's all I'm capable of and like passengers on an aeroplane look to the stewards faces to see whether to be worried or not, my loved one are my guide.
    Thankyou for your honesty, may u always continue to be .
    Quakeroat1
     

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