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Monday, November 28, 2011 Nursling, Community Member, asks

Q: My father has dementia for many years, we had noticed the beginning of agnosia. But the last weeks it has accelerated to our dismay. Does agnosia appear worse suddenly, or is it just our perception?

He has started some new meds (citalopram) lately and my mother thinks the worsening has to do with them. Without any other side effects, I think it may be just the inevitable arrival of what I feared.
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Answers (4)
Carol Bradley Bursack, Health Guide
11/29/11 8:50am

Hi Nursling,

Symptoms such as agnosia can accelerate quickly, but it's also possible a medication change or an infection such as a UTI is setting this off. I'd at least check with his doctor so that they can tell you if he should be seen or if they think it's a natural progression, given is stage of AD.

Take care,

Carol

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NC, Community Member
11/29/11 10:49am

Sometimes some trauma can cause the agnosia to get worse. Sometimes it is the stage as it gets worse. At some point, the situation will get worse for a short while and then it will stablize for a long while. For example, my FIL has severe stage of Alzheimer's and almost once a year or once every 6 months, he would decline a little bit and then get stable. For example, he stopped walking in May but he has been adjusted to get used to the wheelchair now.

Medications can cause side effects as well. So check with the doctor for advice. It does get worse suddenly and then it wil stay stable for a long while. Usually the agnosia gets worse slowly once a year. It would decline a littie bit once or twice a year and then it would stay stable/baseline for a long while until the next episode.
Any trauma such as hospitaliziation can make him decline faster.

Dementia cannot be cured so it will get worse slowly.

 

Regards,
NC

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Nursling, Community Member
11/29/11 11:20am

Thanks Carol and NC- your input is really appreciated.

 

Right now he gets very agitated at night time especially, and calls my sister telling her my Mom is 'a stranger'  in the house. After an hour or so he calms down-relatively- again. Neither my sister nor I live close- We hope this will change.

It is frustrating, and we don't know how mom copes.

 

It is a little surreal seeing all this unfold, I'm a medical professional but when it's your own family....!

Many thanks.

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CJ, Community Member
11/29/11 10:10pm

Hello, Nursling, I'm sorry you are facing this situation with a beloved parent. 

 

Your mother will need some help as the days go on.  Your distance from them makes it almost imperative that she find assistance, and soon. 

 

My father, who died after a relatively short (3 months) but very intense bout of vascular dementia, decided my mother needed to leave; she was a stranger, he said, and she kept watching him.  He would not let her sleep in their bed.  When she tried to sleep on the couch, he would shine a flashlight on her.  If he did not think she was a stranger, he grew anxious if she was not at all times in his presence.  It broke my mother's heart.  The doctor finally told the family to remove my father from the home, because my mother was getting ill from the situation of trying to appease him.  She lost about 30 pounds during this period of his growing agitation. 

 

The nighttime agitation was the pits.  Sundown syndrome was not generally discussed at the time (1993), and we only learned the name for the problem once he had been hospitalized.  The problem here is that your father might up and lock her out of the house.  Then who knows what might happen.  And she might hurt herself trying to mollify him.  She can't handle this alone.

 

Depending on the kind of dementia your father has, his agnosia might come and go a bit, though I agree with Nina that these things tend to happen in phases, where there is a period of significant change and then a period of stabilizing.

 

I hope you come back to the site often and find help here.  I know I do!  My elderly mother lives with us now.  If only such technology had been around when my father was sick and dying in 1992 to 93.

 

Very best wishes to you,

CJ

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Nursling, Community Member
11/29/11 10:44pm

Thanks so much CJ for the information.

I am so grateful for your sharing. My parents keep very much to themselves and my mother is bearing the brunt of the changes without asking for help. My father's dementia has never been clearly diagnosed, my mother always says she doesn't want to upset the doctors by asking questions(!)- (to me it seems like lots of alzheimers with generous  portions of vascular, or vice versa). She has actually  adapted amazingly over time to the incremental changes caring for him. For a long time, she said he was "putting it on" .

As a medical person myself I realised that they did not want me interfering. I also knew that things would inevitably change as they now are. It may seem heartless, but I have to let circumstances dictate the next moves. Example:My mother took my dad on vacation up until this year as my sister and I watched amazed, and she never told us what happened when they were away, we only got postcards saying "having a lovely time". The reality was that he was getting lost, naked in hotel hallways, and generally getting agitated going through the security checks at airports, but that did not stop her. This year she finally put an end to those holidays. 

I have encouraged her to visit the MD this week. Part of the problem is that I am not there with the MD's  to ask the important questions and explain what is going on at home, nor can I, yet. Often, he is relatively lucid and my mother feels she can't discuss things in front of him. I think my mother downplays the symptoms and the horrible , growing stress that comes with living with something considered a ' family secret ' . Both myself and my sister worry more about my mother, if something were to happen to her- well........

As you may gather, I need to ventilate my  own frustrations with the situation. I apologize for my long rant, but your advice is helpful. I just wish my mother had a forum to do the same. That is something I have been trying gently,  to get her to do. 

 

Thanks! 

 

 

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CJ, Community Member
11/30/11 7:43am

Hello again.  My mother, too, lived in a kind of denial of the situation.  She longed for the moments when my father would be lucid.  The denial hurts *her*, though, and your concern about that is touching.  My mother's generation were socially trained to consider dementia something "not to be discussed," as if dementia were some kind of badge of shame. 

 

If your mother uses the computer, perhaps you could bring her to come to this site.  And if not, perhaps you could look up the various tests here that *you* could take sort of *for* your father.  This sounds like a serious case of undiagnosed dementia.  The thing is, the drugs today are very good at assisting people.  My mother's quality of life simply *zoomed* upward once she was diagnosed with Alzheimer's and put on appropriate drugs.  Undiagnosed, she was silently suffering seizures, probably had a stroke, and generally felt confused almost all the time, and she tried to cover these things as best she could.  Now she has let go and actually enjoys, much of the time, being fussed over and taken care of.

 

One of you - you or your sister - or perhaps both of you need to see the doctor with your mother and father.  You might also want to talk about health care power of attorney or living will issues with your parents.  These are legal documents that, at least in the US, can help us in the decision-making later on. 

 

There are Alzheimer's support groups in many communities.  Perhaps you could check into whether such a group for caregivers is in your mother's area.  Your mother needs somehow to be brought out of denial, so that you father might be able to get appropriate treatment.  You, of course, know that. Implementing the decision can be difficult.  I was the one who had to do these things when my whole family went into denial about my father.  It was not easy nor pleasant, but it was necessary.

 

Very best wishes to you as you face this difficult passage.

CJ

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AFA Social Services, Health Guide
11/30/11 10:57am

Agnosia, one of the “4 A’s of Alzheimer’s disease,” is the inability to correctly interpret signals from a person’s five senses. Symptoms of Alzheimer’s disease present differently in each individual, at different rates and on different timelines. Further, because of the progressive nature of the disease, symptoms that seemed mild at first, even for a relatively long period of time, are likely to increase and worsen. However, Alzheimer’s disease progresses at a slow rate; sudden or acute changes in symptoms may signal other issues, such an illness, infections, or medication side effects. It is recommended that you report these changes to your father’s physician for a comprehensive evaluation and assessment.

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By Nursling, Community Member— Last Modified: 11/30/11, First Published: 11/28/11