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Old 12-19-2012, 04:51 PM   #1
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Lightbulb Advice needed. Undiagnosed but I know in my heart it's dementia

My mum is 83 years young and always seemed alert and fine.

I live with her and last year took extended leave from work to care for my father who was dying of cancer. Obviously a very difficult time for my mum.

A few months after he passed away my mum fell and broke her hip. She was fine after the operation to repair it (although she had some nightmare hallucinations).

Recovery was slow and she went to a rehab for 8 weeks. During that time she seemed to deteriorate. One night she was found wandering in someones room in the middle of the night using her new frame.

When she came home (six months ago) she was disorientated and I noticed her memory and ability to do tasks was not that great (she would mix up the phone with the TV remote).

She then forgot her grandchildrens name unless I told her what letter they begin with. About 3 months ago she forgot that my sister was adopted.

She now remembers my sister was adopted without a prompt but her memory is all over the place. She has difficulty remembering my date of birth, has no idea what my sisters DOB is.

The nurse did a memory test about 2-3 months ago (the questions like what am I holding? What day is it?) and she was told she passed with flying colours.

But to me it's getting worse. She has difficulty still with my birthday. Today we went Christmas shopping and she wanted to get a few people a present. She chose one for her friend Ange and then a couple of minutes later I asked who she needed to buy for now ? "Well I have to get Ange a present" she said. I was like you just got her one.

I thought I would test her. So a few mins later I asked her who she needed to buy for. "Ange" can the reply. Infact in the course of 25 mins this occurred about 8 times.

It feels like it's getting worse.

Her sister has advanced AD. The other thing is the spark has gone from her eyes. It's a blank look. She watches TV but if I asked her about a plotline she really didn't follow it. She has no interest in the crosswords she once did.

We can't get an appointment until February with the Therapist.

I'm worried she will decline even further by then.

She just sits all day and doesn;t engage in anything. My savings are running out and I need to return to work.

I'm not sure what to expect or how fast this will all deteriorate.

I am almost certain many of the questions she was asked 3 months in the test, she would now fail.

I am totally terrified for my mum. It was difficult enough with my dad but I understood that. With this I am just in the dark and it feels like another blow.

My partner really doesn't understand it and feels she is faking it and that I need to be harsher on her. To me that's ludicrous.

My mum is the most precious thing to me and I find myself getting irritated with her, angry. I feel emotionally drained.

Sorry I have gone on a bit.

 
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Old 12-19-2012, 11:09 PM   #2
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Re: Advice needed. Undiagnosed but I know in my heart it's dementia

Deany, you may very well be right in your assessment of your Mum. It does sound like she has some cognitive problem. You do need to get her tested again, but knowing what is going on is not going to stop the progression. I know it is frustrating and it is easy to be angry with them... or as your partner, believe they are faking it. You Mom is not more faking this than she could fake a broken leg. When you equate it with a physical disease it is easier to understand. Cognitive decline caused by dementia is brain damage. She is doing the best she can. It is up to you to meet her where she is, not try to bring her back into our reality. I know you love your Mum and want the best for her. This is just a difficult disease to understand because it affects the brain. The symptoms are strange and unusual behavior. It is so much easier to understand an infection, cancer, or a broken bone.

February will come faster than you think but it might help to call the Therapist and ask if you could be moved up, if there is a cancellation perhaps, because this is becoming a critical situation. Give them details of Mom's behavior and the fact that you need to go back to work because the money is running out. Is there another avenue you can follow to get help? I know your system in the UK is different from here in the US but don't give up trying for an earlier appointment. If you don't get it, take her in February and don't take "nothing is wrong" for an answer.

In the mean time you can check the medications she is taking for side effects that can mimic dementia. You can go on line and search for MMSE, Mini Mental Status Exam. It is a simple 30 question test that many doctors use to indicate cognitive decline. You can ask the questions yourself. There is one point for each question Mum gets right. The lower the score the more decline there is.

Love, deb

 
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Old 12-20-2012, 02:25 AM   #3
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Re: Advice needed. Undiagnosed but I know in my heart it's dementia

Thanks.

That is the test she had and she passed. I will do it again.

Reading about the subject I am worried that the operation she had accelerated something unnoticed.

I also know she has been depressed. Loosing my dad and then her mobility within the space of a few months is difficult.

The therapist told me on the telephone that if she is depressed they treat that initially and do not see it as dementia. So I guess anti depressants.

Does anyone know what to expect from the initial consultation?

 
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Old 12-20-2012, 03:10 AM   #4
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Re: Advice needed. Undiagnosed but I know in my heart it's dementia

Oh and I did check the medication specifically the new ones introduced which are
Candesartan (blood pressure) & Clopidogrel I assume due to inactivity (blood clots)

She is also on statins for years and Ventolin inhalers.

There is a great deal of stuff about statins but it seems dangerous to stop it.

 
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Old 12-20-2012, 08:31 AM   #5
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Re: Advice needed. Undiagnosed but I know in my heart it's dementia

Miss diagnosing early dementia as depression is actually not uncommon. The early symptoms of dementia are almost identical to those of depressions. My Mom was misdiagnosed for almost 2 years with depression when in fact it was Alzheimer's. That is why more extensive testing is needed. Your Mom probably scored in the upper 20's on the MMSE which is not a horrible score but it is indicative of early problem. They see the depression symptoms and go no further. If there is a score on the MMSE below 29... there is a problem. We all wish that the problem is depression. That way we give them a pill land it goes away. The problem is that if it does not go away you are another six months to a year into the dementia without knowing.

There is evidence that surgery/medical trauma can accelerate cognitive decline. It has only recently been studied and a connection was found but more extensive research needs to be done into why. Even during all the years that the medical profession was denying the problem, those of us with loved ones who have dementia knew of it's connection. Yet sometimes the surgery is necessary and there is nothing you can do to change the outcome.

I would not take her off her blood pressure medication or blood thinners but there is no reason to leave her on Statin. The first two medications will thin her blood and control her blood pressure. They have an immediate effect and when you stop taking the pills the effect goes away causing a critical situation almost immediately. With the Statin, it lowers the cholesterol level in the blood over time. Cholesterol, unlike the other two situations, is not something that will cause an immediate problem. Cholesterol build up takes years. Taking it or not taking it has no immediate effect. It is more of a preventative for some time in the future. I took both of my parents off Statins in 2007. Dad, even with his heart condition, live for another three years. Mom is still alive with not adverse effects. On the other side of the coin I took statins for almost a year with major side effects. Cholesterol is actually brain food. With the lowered Cholesterol levels I went into a mimic state of cognitive decline. I also suffered from depression like symptoms. I forgot my medication and did not take it for two weeks, only to return to normal, and realized my symptoms were all a result of the Statin. That is a rare side effect but one that is now recognized. After that experience, knowing what I know about Statin, I DCed the medication for both my parents... with no effects at all.

On the first consultation your Mum should get a complete physical with blood work to make sure there are no health problems that could cause her cognitive decline. There should be a complete review of all her medication as well. She should be given the MMSE and any score below a 29 should be followed up with further cognitive testing. She may also receive a CT scan or MRI to rule out any condition of the brain that could cause the problem. If there is shrinkage of the brain that is an indication that dementia may be present. If she has been treated unsuccessfully with antidepressants, that rules out depression as the cause. Since there is no one stop test that diagnoses cognitive decline, diagnosis is a process of eliminating all the other possibilities and looking at the symptoms. That is why it is imperative that you give them all the information possible on her behavior and cognitive function.

Try to keep a journal between now of anything that you think might be important. This will give you a better feel for what is going on and what you need to talk to the doctor about. It will give you patterns and a time line. When you are in the midst of the chaos it's difficult to remember all the details unless they are written

Hang in there!! You are doing the right things. Learning all you can about the disease is important so you will know what to push for and how to help your Mum. The diagnostic process takes patience and persistence and I see you have both. And know we are here if you need to vent .....

Love, Deb

 
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Old 12-20-2012, 04:24 PM   #6
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Re: Advice needed. Undiagnosed but I know in my heart it's dementia

Thanks for all that information.

She actually scored above 20, I think 25, in that region. The one she slipped up on was to recall an address and she muddled something up.

I am going to do the test again with her myself.

It's really difficult caring for her. My partner is not understanding at all, the complete opposite. I have no real support and I can't leave her alone due to the hip problem, so it's difficult to even go out. With this pending I am really scared of how I will cope.

I guess it's one step at a time.

 
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Old 12-20-2012, 06:41 PM   #7
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Re: Advice needed. Undiagnosed but I know in my heart it's dementia

Deany, a 20 or a 25 indicates that there are definite problems. There are 30 questions, one point per question, so she missed 5 to 10 of them. That is significant. It will be interesting to see what she does on it this time. When Mom's score was a 24 she showed significant decline on further cognitive testing.

As for the partner, try educating. Let them know that it is not a lack of will or simple stubbornness. It is brain damage caused by a disease that eats away her brain. Give them information and see if it will help. I would question their compassion and take a second look. Is that the kind of person I want to spend my life with. What happens if you are sick or injured? How do they treat their own Mum? This is your Mum and she deserves better... and so do you Just my thoughts. You can do whatever you would like with them.

I can tell you that this is the scariest time, or at least it was for me. When you are not sure what you are dealing with and where you are going with it. The uncertainty of not knowing keeps you from making plans and finding solutions. Once you know what you are have to deal with and what help is available, it will be easier. No the disease does not get easier but we all have an easier time when we have information and a plan

Hang in there.... you are doing all that you can!

Love, deb

 
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