Hello all, I'm hoping someone can give me some help... I'm sorry this is long... We have been aware of memory issues for some time (18mths) for my mother, and her GP prescribed Memantine for a while. We wanted a more specialised opinion / scan, and so he referred her to a neurologist specialising in this area. Honestly I could weep for the result of this, we tried to warn him via his secretary that she had zero understanding of the memory loss, and that she'd recently refused a scan, and was very distressed. His solution was to start the appointment telling her she had Alzheimer's, bombarding her with memory questions that just made her more and more distressed, to the point where she then began blaming my father for bringing her to the doctor, and then he ended the appointment, whilst she was crying and distressed, as he'd run out of time. I went over to their house on the way home, to try and help calm her, and all she could do was keep repeating that she will never forgive my father for taking her to 'that awful man'. She still has no memory of the diagnosis or what happened at the meeting, just the feeling of how dreadful it was.
Since then (8 days) things have not improved. It's hard to tell if she's subconsciously remembering the diagnosis and acting on that, or if she's had some mental break as a result, but my father (and all of us) are at breaking point.
She was already trailing my father around the house, and distressed when he left the room. He does all the cooking etc, although she can look after herself, wash, dress etc. But my Dad can't leave her as she will call my Dad in a panic, but until this appointment, I could normally go and sit with her and give him a break, or take her to the shops etc. But since this appointment it's all changed.
My father has been saying that she is constantly saying she is unwell, needs to go to the doctor etc, and he's already taken her twice in the last week. They put her on some anxiety meds this week although I assume it's too soon to see the effect. My husband and I were away on holiday for a few days, and things were so bad we came back early to try and help, and seeing it first hand yesterday, I'm so worried for her and my father.
He called me first thing, as was already struggling from the night. (she has been waking in a panic, dressing and saying she is ill and needs to see the GP - I don't think he is getting any rest). I was there for 12 hours and had to face the reality of how bad it is for him. She was in bed saying she was nauseous and unwell. Every 10mins or so she would call my father, and then me, saying she was ill and either wanted her medicine (she'd had it) or needed to go to hospital. We tried everything to calm her down, distract her, honestly to no avail. Nothing would cheer her up and she never seemed to accept any answer, or get distracted for more than a minute or two. Unfortunately she has very little routine or enjoyment so trying to get her to watch an old movie she loves, walk in the garden, look at a magazine, talk about my holiday, call a friend, all are in vain. The only thing that worked for a moment was assuring her that she had had her meds, or that her blood pressure was fine, or that she saw the doctor just yesterday and needed to wait for the meds to take effect. I tried to put on a tv show she liked, but she ignored it. So my calming etc only lasted minutes, before she would be calling in panic again just minutes later, asking about her medicine, or saying she needed to go to hospital. She does have high blood pressure so we were taking that.
I'm not sure if the panic she put herself in led to the raised blood pressure, or if the blood pressure was raised and making her feel ill, but it was definitely rising so we did start to worry. When it got to 199 I called 111, as I was now worried it was a real and pressing health issue... the ambulance came and did an assessment (they were incredibly kind, I was so thankful), and her pressure was coming down, so they gave her the choice to go to hospital which she declined.
They were there for over 30mins doing the assessment, and apart from some of her normal memory issues she was quite okay with them. So she did manage to 'pull herself together' as it were in front of the strangers/medical people there to help. They left and within minutes she was calling me, half dressed, saying she needed to go to hospital.
I tried to show her the form from the ambulance, remind her that she's had the all clear, and it sort of distracted her, but, again, 5mins later the same thing.
Eventually at 10.30pm my husband and I had to leave, despite this circle of events repeating. It broke my heart for both of them to have to leave. I am going back shortly, and expect that my father will have had this all night long. Certainly as we left I could hear her pleas to not go as she was so unwell. It's been 8 days like this without stopping. Without 'lucidity' as I said in the title, as she never seems to have a moment of 'oh okay, I'm feeling better now', or 'how was your holiday', the only thing we hear is that she is unwell and needs to go to the hospital, a pause for just a few minutes, and then it starts again. Although saying that, she was lucid with the Ambulance people so she can do it.
I've been trying to read up on this, and can see that it's a plea for help. We are avoiding the words Alzheimer's or Dementia, but trying to gently remind her that we are trying to help her with her memory (that seems to go okay). We can keep trying to distract her from her panic, but nothing is working. It's almost impossible over the last 8 days to get her to dress, let alone go out the house, walkin in the garden, or go with my Dad to the shops or have a coffee at her favourite place, or speak to my brother on the phone (he lives abroad). She's diagnosed with 'mild Alzheimer's' but this seems far worse - and all started from the appointment with the neurologist. Does anyone have any suggestions that might help? I did read about sundowning, and I wondered if this was possible to happen 24 hours a day, as it's been 8 days like this... Or is this a stage (and how sad it happened overnight). Any help or suggestions would be hugely appreciated... I think we need to try and find a carer to give my Dad a break - although I suspect she will not want them in the house and will refuse it. As she was sort of okay with the Ambulance people (and doctor's when she sees them) and managed to stay focused on that I wonder if that's relevant. Again, I'm sorry for the long post... Thank you.
It's just so heartbreaking...
Since then (8 days) things have not improved. It's hard to tell if she's subconsciously remembering the diagnosis and acting on that, or if she's had some mental break as a result, but my father (and all of us) are at breaking point.
She was already trailing my father around the house, and distressed when he left the room. He does all the cooking etc, although she can look after herself, wash, dress etc. But my Dad can't leave her as she will call my Dad in a panic, but until this appointment, I could normally go and sit with her and give him a break, or take her to the shops etc. But since this appointment it's all changed.
My father has been saying that she is constantly saying she is unwell, needs to go to the doctor etc, and he's already taken her twice in the last week. They put her on some anxiety meds this week although I assume it's too soon to see the effect. My husband and I were away on holiday for a few days, and things were so bad we came back early to try and help, and seeing it first hand yesterday, I'm so worried for her and my father.
He called me first thing, as was already struggling from the night. (she has been waking in a panic, dressing and saying she is ill and needs to see the GP - I don't think he is getting any rest). I was there for 12 hours and had to face the reality of how bad it is for him. She was in bed saying she was nauseous and unwell. Every 10mins or so she would call my father, and then me, saying she was ill and either wanted her medicine (she'd had it) or needed to go to hospital. We tried everything to calm her down, distract her, honestly to no avail. Nothing would cheer her up and she never seemed to accept any answer, or get distracted for more than a minute or two. Unfortunately she has very little routine or enjoyment so trying to get her to watch an old movie she loves, walk in the garden, look at a magazine, talk about my holiday, call a friend, all are in vain. The only thing that worked for a moment was assuring her that she had had her meds, or that her blood pressure was fine, or that she saw the doctor just yesterday and needed to wait for the meds to take effect. I tried to put on a tv show she liked, but she ignored it. So my calming etc only lasted minutes, before she would be calling in panic again just minutes later, asking about her medicine, or saying she needed to go to hospital. She does have high blood pressure so we were taking that.
I'm not sure if the panic she put herself in led to the raised blood pressure, or if the blood pressure was raised and making her feel ill, but it was definitely rising so we did start to worry. When it got to 199 I called 111, as I was now worried it was a real and pressing health issue... the ambulance came and did an assessment (they were incredibly kind, I was so thankful), and her pressure was coming down, so they gave her the choice to go to hospital which she declined.
They were there for over 30mins doing the assessment, and apart from some of her normal memory issues she was quite okay with them. So she did manage to 'pull herself together' as it were in front of the strangers/medical people there to help. They left and within minutes she was calling me, half dressed, saying she needed to go to hospital.
I tried to show her the form from the ambulance, remind her that she's had the all clear, and it sort of distracted her, but, again, 5mins later the same thing.
Eventually at 10.30pm my husband and I had to leave, despite this circle of events repeating. It broke my heart for both of them to have to leave. I am going back shortly, and expect that my father will have had this all night long. Certainly as we left I could hear her pleas to not go as she was so unwell. It's been 8 days like this without stopping. Without 'lucidity' as I said in the title, as she never seems to have a moment of 'oh okay, I'm feeling better now', or 'how was your holiday', the only thing we hear is that she is unwell and needs to go to the hospital, a pause for just a few minutes, and then it starts again. Although saying that, she was lucid with the Ambulance people so she can do it.
I've been trying to read up on this, and can see that it's a plea for help. We are avoiding the words Alzheimer's or Dementia, but trying to gently remind her that we are trying to help her with her memory (that seems to go okay). We can keep trying to distract her from her panic, but nothing is working. It's almost impossible over the last 8 days to get her to dress, let alone go out the house, walkin in the garden, or go with my Dad to the shops or have a coffee at her favourite place, or speak to my brother on the phone (he lives abroad). She's diagnosed with 'mild Alzheimer's' but this seems far worse - and all started from the appointment with the neurologist. Does anyone have any suggestions that might help? I did read about sundowning, and I wondered if this was possible to happen 24 hours a day, as it's been 8 days like this... Or is this a stage (and how sad it happened overnight). Any help or suggestions would be hugely appreciated... I think we need to try and find a carer to give my Dad a break - although I suspect she will not want them in the house and will refuse it. As she was sort of okay with the Ambulance people (and doctor's when she sees them) and managed to stay focused on that I wonder if that's relevant. Again, I'm sorry for the long post... Thank you.
It's just so heartbreaking...
