Quite desperate

[Alicenutter]

Hello all.

Joseph & I are in some sort of horrible medical limbo. I just need reassurance that I'm doing the right thing, trying to get him diagnosed, by hook or by crook. His PCP (GP) here in the USA prescribed Donepezil for him on Monday, on the advice of a neurologist. Joseph fetched the prescription, saw the hand-out that went with it talking about Alzheimers and dementia, and has been completely freaking out ever since. The neurologist who prescribed Donepezil has offered two emergency appointments, both of which Joseph refused to go to. The second time this happened we had an ugly scene, because I started screaming at him, and the police were called.

Joseph called the PCP to ask to speak to him, and this doctor, who has been kind and responsive up until now, got his secretary to call back and tell him that he indeed has dementia. I have emailed him to ask him to call Joseph directly; he has not done so. Joseph is increasingly anxious, hostile towards me, and very upset.

Joseph has, understandably, refused to take the Donepezil, until he talks to a doctor… He is still on the waiting list for a cancellation appointment with the neurologist, who is going to be away all next week.

It's a relief just to write all this stuff down. I know nobody can do anything practical, but I need some comfort! Our daughter is coming this weekend, so that should help. We're trying to deal with all this, and in the meantime the Capgras episodes (where he thinks I'm an impostor) are becoming more and more frequent. I haven't been able to stay in the house for a single evening this week; I have to go out and then come back as his wife many times a day. But…to look on the bright side, I've managed to sleep most nights, because Joseph seems to sleep quite well.

I know others are going through much worse, and my heart goes out to all of you. Thank you.

 

[CJinUSA]

Hello all.

Joseph & I are in some sort of horrible medical limbo. I just need reassurance that I'm doing the right thing, trying to get him diagnosed, by hook or by crook. His PCP (GP) here in the USA prescribed Donepezil for him on Monday, on the advice of a neurologist. Joseph fetched the prescription, saw the hand-out that went with it talking about Alzheimers and dementia, and has been completely freaking out ever since. The neurologist who prescribed Donepezil has offered two emergency appointments, both of which Joseph refused to go to. The second time this happened we had an ugly scene, because I started screaming at him, and the police were called.

Joseph called the PCP to ask to speak to him, and this doctor, who has been kind and responsive up until now, got his secretary to call back and tell him that he indeed has dementia. I have emailed him to ask him to call Joseph directly; he has not done so. Joseph is increasingly anxious, hostile towards me, and very upset.

Joseph has, understandably, refused to take the Donepezil, until he talks to a doctor… He is still on the waiting list for a cancellation appointment with the neurologist, who is going to be away all next week.

It's a relief just to write all this stuff down. I know nobody can do anything practical, but I need some comfort! Our daughter is coming this weekend, so that should help. We're trying to deal with all this, and in the meantime the Capgras episodes (where he thinks I'm an impostor) are becoming more and more frequent. I haven't been able to stay in the house for a single evening this week; I have to go out and then come back as his wife many times a day. But…to look on the bright side, I've managed to sleep most nights, because Joseph seems to sleep quite well.

I know others are going through much worse, and my heart goes out to all of you. Thank you.

Hello, Alice. My, you are up against a difficult time. Your Joseph is reacting the way many of us would to such a prescription. My heart goes out to you both. I wonder if you might talk with the neurologist by yourself? I also wonder what kind of tests they have run on Joseph. In my mother's case, they did a CT scan, an MRI, tests of her heart, a sleep study, and all kinds of bloodwork. I want to say that in my mother's case, the drug Exelon was prescribed, in pill form, and it has worked marvelously well for her. She was originally diagnosed in 2009, and here she is in 2016 still "with" us for part of the time. In her late 90s, she is winding down now, but I felt the medication helped her so immensely that I wanted to share that.

I also wondered if Joseph might be brought to the boards to see that there are others, some of them men, who come here who themselves have been diagnosed with dementia, some with Alzheimer's and some with vascular dementia. They are ever so helpful and kind in their discussions about dementia, and they seem like a really open group, expressing their worries and fears along with their joys.

I hope you might persuade Joseph to go back to the doctor for a full discussion, and I hope you will continue to come here and let us know how you are doing.

 

[marionq]

How gracious of you to be concerned with other carers on here given what you are going through. The best I can say is that nothing lasts forever. Joseph will accept the findings when he hears it from the various specialists and he will accept medication when he sees there is nothing else that will help him.

All this takes time and is very stressful while you are going through it. I wish you a strong heart and health to help you.

 

[Alicenutter]

How gracious of you to be concerned with other carers on here given what you are going through. The best I can say is that nothing lasts forever. Joseph will accept the findings when he hears it from the various specialists and he will accept medication when he sees there is nothing else that will help him.

All this takes time and is very stressful while you are going through it. I wish you a strong heart and health to help you.

Thank you so much. You are absolutely right. I keep saying to myself "Sufficient unto the day is the evil thereof", and "Carpe Diem" and "This too shall pass" and you know what? It's all true. It's just that one (ie I) gets a little panicky sometimes.

 

[CJinUSA]

Thank you so much. You are absolutely right. I keep saying to myself "Sufficient unto the day is the evil thereof", and "Carpe Diem" and "This too shall pass" and you know what? It's all true. It's just that one (ie I) gets a little panicky sometimes.

O my, welcome to the club!

 

[Alicenutter]

Hello, Alice. My, you are up against a difficult time. Your Joseph is reacting the way many of us would to such a prescription. My heart goes out to you both. I wonder if you might talk with the neurologist by yourself? I also wonder what kind of tests they have run on Joseph. In my mother's case, they did a CT scan, an MRI, tests of her heart, a sleep study, and all kinds of bloodwork. I want to say that in my mother's case, the drug Exelon was prescribed, in pill form, and it has worked marvelously well for her. She was originally diagnosed in 2009, and here she is in 2016 still "with" us for part of the time. In her late 90s, she is winding down now, but I felt the medication helped her so immensely that I wanted to share that.

I also wondered if Joseph might be brought to the boards to see that there are others, some of them men, who come here who themselves have been diagnosed with dementia, some with Alzheimer's and some with vascular dementia. They are ever so helpful and kind in their discussions about dementia, and they seem like a really open group, expressing their worries and fears along with their joys.

I hope you might persuade Joseph to go back to the doctor for a full discussion, and I hope you will continue to come here and let us know how you are doing.

Thank you too for the words of advice. At the moment, it seems as that as soon as a doctor appears on the scene who is prepared to see Joseph, he will be willing to do that. I have spoken to the neurologist privately; he happened to be on-call last Saturday when a good friend pushed me to do something, anything to move things along. That's how I got his name - I had a very good contact with him on the phone, and suspect that he is the sort of man that Joseph would trust.

Maybe later he will be willing to look at stuff on here, but at the moment he is in nearly complete denial. And he's quite a proud man, if you know what I mean. Old-fashioned? Macho? Yes, I think those are the words that I'm looking for…

 

[CJinUSA]

Thank you too for the words of advice. At the moment, it seems as that as soon as a doctor appears on the scene who is prepared to see Joseph, he will be willing to do that. I have spoken to the neurologist privately; he happened to be on-call last Saturday when a good friend pushed me to do something, anything to move things along. That's how I got his name - I had a very good contact with him on the phone, and suspect that he is the sort of man that Joseph would trust.

Maybe later he will be willing to look at stuff on here, but at the moment he is in nearly complete denial. And he's quite a proud man, if you know what I mean. Old-fashioned? Macho? Yes, I think those are the words that I'm looking for…

I think anything associated with dementia would give us all pause, but especially a person, man or woman, who is used to calling the shots and not admitting to having any weaknesses or ailments. This is what Atul Gawande talks about in his book, Being Mortal. His father was like this, and he had to figure out how to approach him regarding his frailties. If you are a reader, you might also want to look into a book by Roz Chast called Can't We Talk about Something More Pleasant. In both cases, the authors had to deal with a parent who lived in denial.

Sometimes it can help our loved one come around to the idea that something is wrong if we gently point to a few things that went amiss. In my mother's case, she had a seizure during a holiday meal with family. I had to get her to stop driving, then. So I approached her via her ethical side . . . what might have happened, Mom, if you'd been driving when this occurred? you could have been hurt, or, worse, you might have hurt someone else. so let's see what's wrong here and attend to it, don't you think? This strategy worked, and my mother had been a very self-assertive type.

Keep us posted. marionq is so right - it's a long, long process, and that's a struggle, because many of us are used to taking care of things and getting them, you know, *done*.

 

[Alicenutter]

I think anything associated with dementia would give us all pause, but especially a person, man or woman, who is used to calling the shots and not admitting to having any weaknesses or ailments. This is what Atul Gawande talks about in his book, Being Mortal. His father was like this, and he had to figure out how to approach him regarding his frailties. If you are a reader, you might also want to look into a book by Roz Chast called Can't We Talk about Something More Pleasant. In both cases, the authors had to deal with a parent who lived in denial.

Sometimes it can help our loved one come around to the idea that something is wrong if we gently point to a few things that went amiss. In my mother's case, she had a seizure during a holiday meal with family. I had to get her to stop driving, then. So I approached her via her ethical side . . . what might have happened, Mom, if you'd been driving when this occurred? you could have been hurt, or, worse, you might have hurt someone else. so let's see what's wrong here and attend to it, don't you think? This strategy worked, and my mother had been a very self-assertive type.

Keep us posted. marionq is so right - it's a long, long process, and that's a struggle, because many of us are used to taking care of things and getting them, you know, *done*.

I know absolutely what you mean about the desire to get things "done". Goodness this is a steep learning curve isn't it?

 

[CJinUSA]

I know absolutely what you mean about the desire to get things "done". Goodness this is a steep learning curve isn't it?

The learning curve is very, very steep, and the whole *process* seems so difficult and unpredictable. That's why it's wonderful that you found TP, where you can be assured of having people who likely have faced similar circumstances as yours and have somehow got through.

 

[CJinUSA]

So how is it going today, Alicenutter?

 

[Alicenutter]

So how is it going today, Alicenutter?

Ok, ok. Thank you for asking. Our daughter arrives this afternoon so I should be able to be me for a couple of days (!) I do NOT want to wander around being someone else when it's -10F outside!

 

[Scarlett123]

Ok, ok. Thank you for asking. Our daughter arrives this afternoon so I should be able to be me for a couple of days (!) I do NOT want to wander around being someone else when it's -10F outside!

Oh, a heatwave then

 

[Lawson58]

Hi CJ,

The book you mentioned 'Being Mortal' by Atul Gawande is definitely to be recommended reading. Much food for thought.

 

[CJinUSA]

Ok, ok. Thank you for asking. Our daughter arrives this afternoon so I should be able to be me for a couple of days (!) I do NOT want to wander around being someone else when it's -10F outside!

O so very glad to hear daughter will be on the scene. You get to be yourself for awhile and have some help, too. Splendid.

 

[CJinUSA]

Hi CJ,

The book you mentioned 'Being Mortal' by Atul Gawande is definitely to be recommended reading. Much food for thought.

Yes, it's really interesting, maybe because it's written from a doctor's perspective.