Unclear early diagnosis

[granny in waiting]

Hello everybody, I'm new to this forum so not sure if I'm going about it right. I'd like to ask if anybody else has found themselves in the same position as me: my husband who is 80 has a diagnosis of Alzheimer's. He was initially diagnosed about a year ago but there has been confusion ever since about his diagnosis, with different doctors telling us different things - first he had it, then he didn't, then maybe he had Mild Cognitive Impairment, and so on. Now a different doctor at a different memory clinic has said he definitely has it, and has prescribed donepezil, which he started four days ago.

Could I ask two things please. My first difficulty is that I've been given, and read, an awful lot of information about the disease but half of the time I simply don't recognise my husband in it. Certainly he has problems with his short-term memory but that's about it really, apart from that his life carries on completely normally. Did anybody else find that at the beginning please? It does mean that I find it very difficult to find any useful support as everything seems to refer to things that we are just not experiencing, and it doesn't sound like him at all.

The second thing is that I am very concerned about these tablets. The doctor said there might be side effects but we should give it a week or two and it should settle down. However my perception is that my husband has immediately got very noticeably worse the moment he started taking it. He's confused, absent-minded, not with it at all - in fact, the sort of things that people usually ascribe to Alzheimer's - but it's almost as if the medication is doing it to him! Is this normal? I was dubious about him needing to take it in the first place, but now I'm not just dubious but downright worried. I've left a message for the doctor at the clinic but no response so far.

 

[Zen master]

I’d stick with the commencement of a cognitive enhancers such as Donepezil and allow for it to be increased to the therapeutic dose. They don’t suit everyone but in these circumstances there is almost nothing to lose by trying. Risks of not being on a medication that may help is that your relative may be closed to follow up if nothing being given as treatment. Every area may have different criteria for access though.
Try and keep a diary of any observed or reported side effects so this can be discussed with the clinic overseeing things. Difficult in that as everyone is so different as the illness is,how do you separate out what is a side effect compared to what might a progression of illness (maybe a tia?) or another physical cause such as infection?

 

[granny in waiting]

I’d stick with the commencement of a cognitive enhancers such as Donepezil and allow for it to be increased to the therapeutic dose. They don’t suit everyone but in these circumstances there is almost nothing to lose by trying. Risks of not being on a medication that may help is that your relative may be closed to follow up if nothing being given as treatment. Every area may have different criteria for access though.
Try and keep a diary of any observed or reported side effects so this can be discussed with the clinic overseeing things. Difficult in that as everyone is so different as the illness is,how do you separate out what is a side effect compared to what might a progression of illness (maybe a tia?) or another physical cause such as infection?

Thank you, no, he's fit as a fiddle especially for a man of his age. Keeping a diary is a good idea. I don't know what a tia is?

 

[Grannie G]

A TIA is a mini stroke a transient ischemic attack. @granny in waiting.

Medication did not agree with my husband so we stopped it after giving it a fair try. If you are really unhappy about the side effects of the medication don`t be afraid to discuss it with your husband`s doctor.

By the way. Was your husband`s diagnosis the result of a brain scan? I think with people with Alzheimer`s, the brain scan shows signs of global shrinkage of the brain. If it is only minimal, your husband may be well for a while.

 

[DeMartin]

Welcome to TP,
Not every one has the same symptoms of dementia, and not everyone progresses at the same speed. Some posters on TP have a diagnosis of dementia but are managing a “normal “ life.
Some of the important things to do now are legal stuff, Power of Attorney, so if your husband is unable to manage his affairs, bank etc, and he has made a will.
Otherwise it’s a day at a time. Read around this website, ask questions, someone somewhere will have a helpful answer.

 

[karaokePete]

Hello @granny in waiting, welcome to TP.
In my experience it would be unusual to be given Donepezil for MCI. As Grannie G said, have scans been undertaken?
Donepezil is usually started on a low dose that is built up over a few weeks, was this done? My wife is on that medication and if by mistake she takes it in the morning she is ill all day. When taken at night she tolerates it well. However, many people don't get on with that drug and do have to stop taking it. I wouldn't do anything without consulting the doctor.
As to your husband's symptoms, as others have said, everyone is different. However, memory issues above and beyond the issues of normal aging are often the first marked symptom.

 

[Lawson58]

My husband was initially diagnosed with 'atypical' Alzheimer's four years ago , then it was fronto temporal variant of the same disease.

Since then it has been non-amnesiac Alzheimer's and now it is 'non-classical' but at the end of the day, it really doesn't matter too much what label they give it. I believe that at this time, they are still finding out lots of new stuff and someone might give him a different label in the future.

So obviously my husband doesn't slot are into any of stages, criteria, whatever you want to call it, of Alzheimer's.
His long term memory failed him years ago and it is only in the last year or so that his short term memory has shown signs of deterioration. He still plays bridge regularly, is continent and showers daily without prompting.

But he cannot drive, use a mobile phone, has episodes of paranoia and has no problem solving skills amongst other things. Mostly, my biggest problems arise out of his other major health issues.

He was also started on donepezil which really helped but he had some side effects so he was then put on rivastigamine. So even if the donepezil isn't right for your husband, there are other options available.

 

[granny in waiting]

Welcome to TP,
Not every one has the same symptoms of dementia, and not everyone progresses at the same speed. Some posters on TP have a diagnosis of dementia but are managing a “normal “ life.
Some of the important things to do now are legal stuff, Power of Attorney, so if your husband is unable to manage his affairs, bank etc, and he has made a will.
Otherwise it’s a day at a time. Read around this website, ask questions, someone somewhere will have a helpful answer.

Thank you for this, it is really helpful. My husband is fit as a fiddle, cheerful, active and pretty independent - for instance we had a complicated day yesterday and he got to our nearest town by bus to meet me from where I had to be. Then once we'd driven from there to my son's house he strolled off down to their local shopping centre to get a spare key cut. He thoroughly enjoys life and literally the only issue is his short-term memory so I just have to learn to cater for that. Many people have said about PoA but we've mostly got things jointly - not quite sure why it would be necessary as it does seem to be a very complicated process?

 

[granny in waiting]

My husband was initially diagnosed with 'atypical' Alzheimer's four years ago , then it was fronto temporal variant of the same disease.

Since then it has been non-amnesiac Alzheimer's and now it is 'non-classical' but at the end of the day, it really doesn't matter too much what label they give it. I believe that at this time, they are still finding out lots of new stuff and someone might give him a different label in the future.

So obviously my husband doesn't slot are into any of stages, criteria, whatever you want to call it, of Alzheimer's.
His long term memory failed him years ago and it is only in the last year or so that his short term memory has shown signs of deterioration. He still plays bridge regularly, is continent and showers daily without prompting.

But he cannot drive, use a mobile phone, has episodes of paranoia and has no problem solving skills amongst other things. Mostly, my biggest problems arise out of his other major health issues.

He was also started on donepezil which really helped but he had some side effects so he was then put on rivastigamine. So even if the donepezil isn't right for your husband, there are other options available.

Thank you, it's so confusing isn't it and one of the things I'm finding so difficult is that I don't recognise him in other peoples' descriptions of symptoms, so from your experience it's helpful to know that the process is so different. I've phoned the doctor in the meantime and he has said stop taking the donepezil and he will see my husband again shortly when it's out of his system, so maybe he'll try something else.

 

[granny in waiting]

Hello @granny in waiting, welcome to TP.
In my experience it would be unusual to be given Donepezil for MCI. As Grannie G said, have scans been undertaken?
Donepezil is usually started on a low dose that is built up over a few weeks, was this done? My wife is on that medication and if by mistake she takes it in the morning she is ill all day. When taken at night she tolerates it well. However, many people don't get on with that drug and do have to stop taking it. I wouldn't do anything without consulting the doctor.
As to your husband's symptoms, as others have said, everyone is different. However, memory issues above and beyond the issues of normal aging are often the first marked symptom.

Thank you, I've phoned the doctor and he has said stop taking the donepezil and he will see us again shortly once the medication is out of his system, so maybe something else will suit better. Maybe we should have given it a bit longer but I was really unhappy to see him in such a poorly way. All I want is to do the best for him but it seems so difficult to find out what actually is the best.

 

[canary]

Many people have said about PoA but we've mostly got things jointly - not quite sure why it would be necessary as it does seem to be a very complicated process?

You wont need a POA now, but the trouble is that once someone has lost capacity joint accounts are not enough and it is too late to get a POA.

Mum let me add my my name to her accounts as a third party, but then started accusing me of stealing from her and wouldnt do POA. Later she had to move to a care home and I had to sell her bungalow and she also had ISAs in her name that I couldnt access. I had to go down the Court of Protection route which is much, much more complicated and expensive.

After this I made sure that OH and I both have POA sorted out. We may never need them (though I think it probable that they will eventually be needed), but they are there as a safeguard for when they are.

 

[karaokePete]

Thank you, I've phoned the doctor and he has said stop taking the donepezil and he will see us again shortly once the medication is out of his system, so maybe something else will suit better. Maybe we should have given it a bit longer but I was really unhappy to see him in such a poorly way. All I want is to do the best for him but it seems so difficult to find out what actually is the best.

It is very difficult to get the medication right at times. I have had to have my wife's medication altered a bit here and there as we go along. The problem is that dementia keeps moving the goalposts and our loved ones can't always help much with the observation or decision making. Still, there's always TP.

 

[DeMartin]

Thank you for this, it is really helpful. My husband is fit as a fiddle, cheerful, active and pretty independent - for instance we had a complicated day yesterday and he got to our nearest town by bus to meet me from where I had to be. Then once we'd driven from there to my son's house he strolled off down to their local shopping centre to get a spare key cut. He thoroughly enjoys life and literally the only issue is his short-term memory so I just have to learn to cater for that. Many people have said about PoA but we've mostly got things jointly - not quite sure why it would be necessary as it does seem to be a very complicated process?

POA can be done by you, no need for solicitors. You can down load the forms.
My mum refused to look into it , she was diagnosed last March as incapable of managing her affairs and needing 24hour care, so I had to go to the court of protection. It’s laborious and time consuming, only now can I access her finances.
If you OH was declared incompetent, the bank may freeze any joint account,

 

[Sirena]

Thank you for this, it is really helpful. My husband is fit as a fiddle, cheerful, active and pretty independent - for instance we had a complicated day yesterday and he got to our nearest town by bus to meet me from where I had to be. Then once we'd driven from there to my son's house he strolled off down to their local shopping centre to get a spare key cut. He thoroughly enjoys life and literally the only issue is his short-term memory so I just have to learn to cater for that. Many people have said about PoA but we've mostly got things jointly - not quite sure why it would be necessary as it does seem to be a very complicated process?

POA isn't complicated at all. You can't predict what may happen in the future, better to have it and not use it, rather than live to wish you'd done it. OH and I took them out for each other 20 years ago when we were only in our 40s (it was an EPA at that time, we're planning to update to LPAs this year as they are more 'extensive'). The best time to do it is well before it's needed.

 

[Jerry2648]

Hello @granny in waiting, welcome to TP.
In my experience it would be unusual to be given Donepezil for MCI. As Grannie G said, have scans been undertaken?
Donepezil is usually started on a low dose that is built up over a few weeks, was this done? My wife is on that medication and if by mistake she takes it in the morning she is ill all day. When taken at night she tolerates it well. However, many people don't get on with that drug and do have to stop taking it. I wouldn't do anything without consulting the doctor.
As to your husband's symptoms, as others have said, everyone is different. However, memory issues above and beyond the issues of normal aging are often the first marked symptom.

Our neurologist specifically told us to take this medication at bedtime. My wife has not had any problems with it and she has been taking 5mg each day.

 

[granny in waiting]

POA isn't complicated at all. You can't predict what may happen in the future, better to have it and not use it, rather than live to wish you'd done it. OH and I took them out for each other 20 years ago when we were only in our 40s (it was an EPA at that time, we're planning to update to LPAs this year as they are more 'extensive'). The best time to do it is well before it's needed.

Thanks Sirena. Do you know anything about the different kinds? I understand there are separate ones for finances and for health. My problem is that my husband has three daughters from his first marriage, who are pushing very hard for me to set up POA naming them as well as me. This seems to me to be a recipe for trouble. Any information or thoughts please anyone?

 

[marionq]

Get both types and register them immediately. Whether or not you name the daughters depends on how much you trust them. I would also ensure that if you have your own income eg from pensions etc then you have a separate current account in your own name. If you dont trust the daughters then make sure they can't access money which is yours or have the opportunity to misuse your husbands money.

 

[granny in waiting]

Get both types and register them immediately. Whether or not you name the daughters depends on how much you trust them. I would also ensure that if you have your own income eg from pensions etc then you have a separate current account in your own name. If you dont trust the daughters then make sure they can't access money which is yours or have the opportunity to misuse your husbands money.

No, I don't think I made myself clear ... it's not a matter of being suspicious about money matters, it's just that I quite often don't agree with them about what is best for their dad and I could foresee a situation of never being able to make a decision without endless round-robin discussions. I've just found a couple of websites, the official government one and a Co-op one, which seem to be quite helpful. As I understand it you can set the POA up so that other people are named to take over if you are unable to do it yourself, so that might be the answer. If I suddenly pop off there needs to be some sort of back-up I suppose.

 

[Sirena]

It sounds as if your husband still has good capacity, so it's really up to him to decide who he wants to be POA. But yes you can set it up so that it's (e.g.) you, and if you are unable to do it for whatever reason, there is a second choice.

I am sole POA for my mother because she has no other relatives, so while I have all the responsibility at least I don't have arguments about what needs doing. I can imagine it would be very difficult to be joint POA unless it is with someone you are in accord with - as you say, it can be recipe for trouble. Personally I would say that if it is going to be you doing any require care for the foreseeable, you should be POA.

And I agree with Marion, get both types done ASAP.

 

[VicM99]

My husband was initially diagnosed with 'atypical' Alzheimer's four years ago , then it was fronto temporal variant of the same disease.

Since then it has been non-amnesiac Alzheimer's and now it is 'non-classical' but at the end of the day, it really doesn't matter too much what label they give it. I believe that at this time, they are still finding out lots of new stuff and someone might give him a different label in the future.

So obviously my husband doesn't slot are into any of stages, criteria, whatever you want to call it, of Alzheimer's.
His long term memory failed him years ago and it is only in the last year or so that his short term memory has shown signs of deterioration. He still plays bridge regularly, is continent and showers daily without prompting.

But he cannot drive, use a mobile phone, has episodes of paranoia and has no problem solving skills amongst other things. Mostly, my biggest problems arise out of his other major health issues.

He was also started on donepezil which really helped but he had some side effects so he was then put on rivastigamine. So even if the donepezil isn't right for your husband, there are other options available.

Hello

I am also a new member and just looking around for information. I care for my aunt ( she has never been married and has no children ) who has been diagnosed with amyloid angiopathy which from what the doctors have said is the beginning of dementia.

The main problem she has is a loss of balance and has falls every day often hurting herself badly and ending up in hospital. She doesn't have particularly bad memory loss but cannot deal with making decisions or problem solving. She lives at home alone and has private carers who visit twice a day. I live about 30 minutes away and there are frequent calls from the monitoring service and carers when she has fallen and I have to go over. Luckily I am self employed and work from home and I have a cousin who is really helpful and supportive who I can discuss things with and he visits when he can.

At the moment we are worried obviously about her safety but also about how much she understands about her illness and at what point we should talk to her about it and any plans she might want/need to make. We know she wants to stay at home and she hates carers visiting. I wondered if she might feel better talking to a professional who could discuss her feelings and worries with who might be able to give her advice if there are any such persons available?

She already has an EPA in progress and myself and my cousin are joint decision makers. It feels like a huge responsibility as she looks to me constantly to make decisions for her.

Any advice anyone?