1. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,327
    East of England
    Today he thought his son was called Chris, who is our grandson, and couldn’t remember the name of his son. He thought ‘Chris’ had come to see us this morning when in fact our son and grandson came to supper last night. This is the start of something new, forgetting close family names, and he is very confused and tired. Every day now he goes upstairs after breakfast and lies down on his bed for an hour or two. After lunch he is back on his bed for another hour or two and by 8.30pm he is agitating to go to bed because he is so tired. This lying down a lot is also something new because even a month ago he was more active. It is heartbreaking to see him looking so confused as if he is trying to make sense of his thoughts. I first found this website and started using it in January and I can see that it is only that fact that is enabling me to face these changes. He can’t remember which pills he takes when now and every night thinks he has to take the wrong ones and not the right ones. This has developed over the past few weeks. His physical ability has declined markedly and he constantly has to go and sit down after a small amount of activity. The steep decline over 6-7 months is now clear and I fear for the next few months.
     
  2. Al_B

    Al_B Registered User

    Jun 8, 2016
    9
    Male
    Manchester
    Hi Grahamstown,
    Sorry to hear the problems you are having. Has he been checked for an infection? A urine infection can cause a sudden dramatic change.
     
  3. Manc70

    Manc70 Registered User

    May 30, 2018
    119
    Female
    S. Yorkshire
    Hi Grahamstown, I feel for you so much, It is heartbreaking. Isn’t it frightening when things seem to move on a pace. I find that I can get use to a behaviour and I think if I can keep things at that level we will get by ok, then something new is done or said that makes my tummy do somersaults. These things seem to be coming thick and fast recently. My husband is 70 and still fairly physically fit apart from an all consuming tiredness that comes on quickly. If I can manage that he has a nap/sleep before or after an outing/activity we can get along fairly well but today was an unintentional long but lovely day, and with the heat etc we were both ready for a meal and relax when we came home. Then I did it......... I didn’t put brain in gear before opening mouth when I noticed a garden table and chairs had been piled in the shed after I’d asked him this morning to leave it out. I only commented that he didn’t leave the garden furniture out as I had asked - yes I know I should have just ignored it, normally I would have - but then that was it, anger, aggression, not wanting to eat and finally lying fully dressed on the bed where he is nearly 6 hours later. He did silently take his meds when I took them to him. I know the repercussions of him sleeping so long, especially if he stays there until morning (as much as I’m enjoying the peace) will be even more confusion rather than benefitting from a long sleep. The changes in him recently have been the anger, a lack of empathy, where he had still been quite caring and loving there is a coldness about him. I am trying to cope with also feeling angry at him because of this, I know it’s not the real him. It’s so hard isn’t it. I’m sorry I’ve encroached on your post, it just struck a cord with me. Take care, kind regards x
     
  4. canary

    canary Registered User

    Feb 25, 2014
    10,245
    Female
    South coast
    The times when you suddenly notice the changes are like being slapped. Its a sudden horrible shock - and it hurts.
     
  5. malomm

    malomm Registered User

    Hello Grahamstown and Manc70, I can well understand how you are both feeling., it all takes a lot of handling that takes it out of you. I'm a long way down that road now, and am frequently asked if I've met Mrs M's father if I've been out somewhere; he died in 1944! You have to constantly drum into your own brain that you are dealing with the disease, not the person that your partner is now or was before.
    Try and keep smiling.
    malomm
     
  6. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,487

    I agree with that. It's almost a physical thing. Like being punched and then feeling sick after. Like a feeling of panic that won't go away. Horrible.
     
  7. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,327
    East of England
    I was able to go to see my friends for lunch today and my daughter and family came to be with her Dad. He was unable to use his card today when out with her, probably the wrong pin, that’s a first too so she paid. Lately I have been paying for everything so that has probably masked the problem. A lovely break but quite tiring traveling.
     
  8. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,327
    East of England
    Hardly able to remember anything about yesterday at all and today he has started telling me that I told him the opposite of what I did say. He didn’t notice that I was back and nor did he ask me how I got on, very unusual. The extreme heat may have played a part, does anyone else notice that? Or it’s just a coincidence and the decline is inexorable.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,245
    Female
    South coast
    Im sure the extreme heat plays a part. OH has been so confused and lethargic. Weve got nice steady rain today and its much cooler, so Im hoping that OH will perk up a bit.
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,327
    East of England
    I have been driving him to his lunch place recently because he couldn’t remember to use his bus pass, banged his head getting out of the bus, and brought a take away cup of hot tea home on the bus and tipped it because his hands are shaky. Today, after a run of low alcohol drinks he is a bit more ‘with it’ and wanted to go in and out on the bus so he has gone. Now the iPhone Find Phone App has come into its own because I can make sure he has got there safely. He never actually uses the phone for calls or messages, just reading emails but if I keep it charged, on and in his pocket then it gives me peace of mind. Conversation now revolves around the past, his working life, the family and the immediate present moment. Everything else is wiped. As long as he can safely be independent going in and out of town on a route he has done hundreds of times, I think he should do it because he couldn’t get around anywhere else. From an independent driver, going to the gym and functioning normally a year ago, he is now physically weak, tired and spending large amounts of time on his bed, with no short term memory to speak of. What next, I try to stop myself asking!
     
  11. canary

    canary Registered User

    Feb 25, 2014
    10,245
    Female
    South coast
    Im sorry Grahamstown, watching the decline is awful
    At least the phone is giving him a bit of indepenance
     
  12. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    655
    Female
    New South Wales Australia
    Hi grahamstown - reading your posts and sending my love - mud joy X
     
  13. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,487
    Yep @Grahamstown it's a jungle out there. Took dad for a hair cut this morning and sat out side the door in the car with the air-conditioning on full blast as a little treat for myself whilst keeping a beady eye on the door. It is a little shopping parade that goes onto a busy roundabout. After about fifteen minutes dad came out turned right and started walking home. Then me frantically tooting the hooter and waving my arms out of the window as I tried to catch him up before he attempted to cross the road. He looked very surprised to see me and seemed to think I was just passing. He was followed by the barber waving dads cap as he had forgotten it again. Hair raising experience for me but dad got his haircut.

    I would have had a nervous breakdown if I had not caught him in time as he would never have got over that road safely.

    Anyway he was glad that I was passing as it saved him a walk home.
     
  14. Manc70

    Manc70 Registered User

    May 30, 2018
    119
    Female
    S. Yorkshire
    Hi Grahamstown, since using TP it never ceases to amaze (and sadden) me how so many posts are so familiar and I want to shout yes I know just what you mean! I’m dreading and scared about when some of the more advanced symptoms have the same affect. This morning my OH went to lie down on the bed for an hour before going out, we decided to try our local Dementia Cafe at the church only to find it closed. We had a coffee and cake in a local cafe, a quick trip to see a daughter and drive into town to do a recce to a new place I need to go next week. His brilliant sense of direction is completely gone. We are now home two and a half hours later and he is shattered, shaky, finding it hard to string a sentence together and has gone for his usual after lunch lie down. It sometimes happens 3 times a day. Our conversation is very military based, he was in the army for 25 years but has been out 28 although you wouldn’t think he’d had a life since. It hurts that the things he talks about don’t often involve our family life over the last 46 years, we always moved with him to new postings.
    Yesterday he became very confused and weak, he seemed to be off balance and slow to walk and speak. He complained of a headache, a common occurrence lately, I gave him paracetamol helped him onto the bed where he slept for a few hours, got up, had a shower and was fine. Meanwhile I cancelled a trip to the local cinema because I decided I couldn’t leave him. I hate myself for wondering if I had been manipulated as it is the second time I’ve had to cancel the same outing but it all appeared to be very real.

    On the subject of headaches, my husband hardly ever suffered from one but it is now always part of when he feels ‘strange’ or confused, angry etc - is it something other people have become aware of as a symptom? He describes them as a band round his head. His neurologist knows about them and as part of his investigations he had CTs and MRIs so I’m pretty confident they aren’t more sinister.
    Sorry if I have gone on, I sometimes think once I start I can’t stop! I’m sure most of think we could write a book about the way in which our lives have changed.
    Kind Regards x
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,245
    Female
    South coast
    A headache that feels like a band round the head is often a stress headache. If nothing else has been found and its when he is feeling "strange" , "confused" etc, then I think this would fit with it being a stress headache. Our PWDs try so hard to do things, but Im sure it must cause a lot of stress.
     
  16. Manc70

    Manc70 Registered User

    May 30, 2018
    119
    Female
    S. Yorkshire
    Thank you canary, yes I’m sure you are right. It does come on mostly after things have seemed relatively ‘normal’ and when he has been in host mode with other people - it takes an awful lot out of him and he nearly always ends up complaining of his headache.
     
  17. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,327
    East of England
    #17 Grahamstown, Aug 3, 2018
    Last edited: Aug 3, 2018
    @Duggies-girl ‘After about fifteen minutes dad came out turned right and started walking home’, this happens with us regularly especially away from our usual places.
    @Manc70 ‘This morning my OH went to lie down on the bed...usual after lunch lie down’, oh my goodness how familiar it all is. He definitely feels it after going out, meeting anyone and having to be social. He is really trying to think and be coherent that it is exhausting.
    Thank you everyone for your lovely supportive comments, we are all together in this aren’t we? He got back safely from his lunch trip, didn’t bring the hot drink and went straight to bed as usual. Of course when he got up he announced that he was going for a pint! Oh no he wasn’t. I have been exasperated by the research in the newspaper yesterday that alcohol is beneficial to prevent dementia. It was completely unhelpful in describing exactly what the research showed and reading the comments on the article online it seems that the amount of alcohol that is protective is not much so I can see some people taking it as a license to drink. We are working our way through Foyle’s War which keeps his attention even though he keeps saying that he doesn’t know what is going on. I am going to save the recordings of the current repeats because I can see that we might be going around again. Unbelievable!
    @Manc70 ’Meanwhile I cancelled a trip to the local cinema because I decided I couldn’t leave him’, yes that’s me too, I cannot leave him now after about 4pm, I just couldn’t leave him in the evenings for any sort of social activity at all. I only do anything important now and my children come and stay with him, so I don’t do that often.
     
  18. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,327
    East of England
    thanks mud joy I know you are plodding on too, love to you too x
     
  19. Mudgee Joy

    Mudgee Joy Registered User

    Dec 26, 2017
    655
    Female
    New South Wales Australia
    Thanks Grahamstown ((xx))
     
  20. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,327
    East of England
    I am very very bad at compassionate communication, and I feel bad about it myself but the patience required is beyond my ability. I guess I can do it sometimes but by the end of the day, it does my head in. There that feels better, a short rant before I take him out for supper and try to keep him off the alcohol.
     

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