Hello all. I'm new here

Discussion in 'I have a partner with dementia' started by anthony551, Aug 17, 2019.

  1. anthony551

    anthony551 Registered User

    May 14, 2017
    14
    Epsom
    Hi everybody,

    My wife was diagnosed with Alzheimer's about three years ago. I got her to see a specialist when became aware that she was losing her mental map of her surroundings. Not the immediate locale but when driving about and out of town. She now needs me to guide her at every junction, traffic light and roundabout and can't leave home without me. Other than that, her driving is very good.

    I have MS and I am unable to drive.

    Recently she has been going to bed all the way through the day. She'll lie down for 20 minutes and get up. Half an hour she'll do it all over again.

    Is this part of her dementia? Or should I mention it to our GP?

    Thank you in advance for any replies.

    Anthony
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,251
    Female
    South coast
    Hi @anthony551 and welcome to DTP

    Yes, going out and getting lost is indeed part and parcel of dementia. It also sounds like your wife is beginning to need more sleep and lose the difference between night and day.

    At some stage your wife will not be able to drive, so I would start thinking about a "plan B" - which may involve taxis, or community cars, or similar, for when that day arrives. Have you told DVLA that she has dementia? A diagnosis of Alzheimers does not automatically stop you from driving, but it is mandatory to declare it, or otherwise her insurance is invalid.
     
  3. anthony551

    anthony551 Registered User

    May 14, 2017
    14
    Epsom
    Hi Canary,

    Thank you for your response. Yes, I'm making plans for alternatives to using the car. There is a council operated minibus service, online food shopping and taxis.

    Notifying the DVLA is on my list of things to do. I must put it top of my priorities.

    I didn't realise that a disturbed sleep pattern was symptomatic of dementia. It really is the most bizarre thing. It's happened so quickly and so regularly.

    Anthony
     
  4. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,331
    East of England
    The symptoms you describe are similar to those of my husband who has Alzheimer’s disease and mixed dementia. He was able to drive but needed directions for anywhere other than a familiar route of a couple of miles, he has lost his license now after the doctor said he no longer should; he gradually slept more and more until he sleeps on and off most of the time because his body clock is no longer working; he too comes up and down ten twenty times during his wakeful period, dozing on his bed between them. I also have Lasting Power of Attorney (LPA), which has eased dealing with things like Attendance Allowance and Council Tax relief.
     
  5. anthony551

    anthony551 Registered User

    May 14, 2017
    14
    Epsom
    Hi Grahamstown,
    Thank you for sharing that. It's oddly reassuring that others know what I'm experiencing.
    How is your husband now?
    Regards,
    Anthony
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,331
    East of England
    I am sorry to say that he is quite sick now, but it’s fair to say that he has gone downhill very fast, eighteen months from diagnosis when we still went on holiday, on outings and meals with the family, to now when he can no longer participate in all these things. Our last holiday was in March and he is significantly worse now. Everyone travels on this road at different rates. I have written about it on my thread so won’t repeat it here but this website has kept me going through thick and thin and I felt the same as you, that I was not alone in bearing the strange symptoms of this disease, which it certainly is. I did both Utas courses, Preventing Dementia and Understanding Dementia, and both helped me a lot. They are signposted on the forums but ask if you can’t find anything. Regards to you too Sue
     
  7. anthony551

    anthony551 Registered User

    May 14, 2017
    14
    Epsom
    Hi Sue,

    I'm still feeling my way around this Forum but I have read a few of your comments.

    When my wife of 22 years suddenly does something stupid and out of character I have shouted and yelled when I have run out of patience, but recently I have begun to understand that she isn't being lazy or thoughtless; it's just another bit of her mind that has closed down. Knowing this has help me to cope a lot better.

    Regards,
    Anthony
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,251
    Female
    South coast
    You might find this helpful too
    https://forum.alzheimers.org.uk/thr...n-with-the-memory-impaired.30801/#post-413710
     
  9. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,331
    East of England
    Recently I have thought that my life is a bit like being in a play where you have certain lines and also have to improvise. I try to be an actor saying things that in the real world would be crazy conversation, but in the play it doesn’t matter. However I sometimes crack and my frustration drives me to anger, so I can’t keep it up all the time and it takes a form of sainthood to avoid it, which I don’t possess. I never tell him anything that he doesn’t need to know nor ‘the truth’ when it is unnecessary and possibly hurtful. So be kind to yourself @anthony551 we can’t do it right all of the time, pretending stuff that isn’t true and living in two worlds, one with our sick people and the other with everyone else. I found the link canary posted really helpful but it took me ages to practice it because it’s counterintuitive. It’s also painful because it signals a rupture with a dear one, which we never expected.
     
  10. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    159
    My husband too has poor sleep, sometimes waking at three or four a.m. and will not settle back. On a 'good' day he's up at six, but I leave his breakfast out for him so that I get longer. He only seems to need about six hours sleep a day, while I need eight. Melatonin seems to help a bit but its no magic bullet.
     
  11. anthony551

    anthony551 Registered User

    May 14, 2017
    14
    Epsom
    Hello Canary,
    Thank you for that. I have copied it to my laptop so I can easily remind myself on the best way to respond to challenging behaviour. I was just getting used to the idea that I need to adapt, so your link is very timely and helpful.
    Anthony
     
  12. anthony551

    anthony551 Registered User

    May 14, 2017
    14
    Epsom
    Hi Sue,

    Yes, living with a partner with dementia is just like being in a play, it's so divorced from reality. Another aspect of my relationship, that I am mourning the loss of, is my Wife's sense of humour. I showed her a quote in a newspaper yesterday. Once upon a time she would have laughed at the absurdity, now it's only a piece of information.

    I hope that the better I understand what's happening to her, the easier it will be for the both of us.

    Anthony
     
  13. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,331
    East of England
    Anthony
    I can only say MeToo! I no longer have my husband, I live virtually alone but I have friends and family to visit regularly so I am not lonely. I am ok with my own company too. Today for example, he came down in his pyjamas at nearly 2pm. I have got a certain amount of food and drink into him one of which is a supplement. He sits opposite eyes shut nodding off and soon he will have to go and lie down. He will be down again in a couple of hours and then be up and down until I go to bed. It’s soul destroying after such a full happy life together. I went for a coffee with a friend this morning and showed her some photographs of our old house and he was in some looking so handsome and strong only two years ago. He used to look after quite a large garden, work at his computer, travel and give talks and now he is a shell of this. Very painful for all of us to cope with this.
    Best wishes Sue
     
  14. sbmandj

    sbmandj New member

    Aug 21, 2019
    7
    My wife was diagnosed with mild neurocognitive disorder in February 2019. She is steadily declining, having memory disturbances, difficulties following simple instructions, behavioral outbursts, anxiety and mood disturbances. I worry about her driving and cooking. She cannot tolerate plans changing. She seems confused a lot of the time and she stays angry with me.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,251
    Female
    South coast
    Hi @sbmandj and welcome to DTP.

    About 50% of people diagnosed with MCI (Mild Cognitive Impairment) go on to get a diagnosis of dementia within a year. So I would recommend that you keep a diary of all the odd things that she does, write a letter to your GP outlining all the things that you have noticed and try to get an appointment back to the memory clinic at the end of this year, or the beginning of next.
     
  16. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,374
    leicester
    Hello @sbmandj a warm welcome to DTP from me also.
    I sorry to read that you are concerned about her driving that must be very worrying for you, is there anyway you could discourage from driving?
    It might be a good idea to tell the GP of your concerns.
    I hope now you have found us you will continue to post this is a friendly and supportive forum.
     
  17. sbmandj

    sbmandj New member

    Aug 21, 2019
    7
     
  18. sbmandj

    sbmandj New member

    Aug 21, 2019
    7
    Thank you. Yes, we are planning a second neuropsychological evaluation for February to assess the degree of cognitive decline.
     
  19. sbmandj

    sbmandj New member

    Aug 21, 2019
    7

    Also great idea to keep a record of behavioral changes
     
  20. sbmandj

    sbmandj New member

    Aug 21, 2019
    7
    We have an appointment with the PCP in October. I’m ready to consider medication.
     

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