It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 01-27-2013, 09:02 AM   #1
Newbie
(male)
 
Join Date: Jan 2013
Posts: 2
Foolishfriend HB User
Can't Get A Diagnosis

Hello,

My Dad has a psychiatric/neurological condition and we are being pushed between neurologist and psychiatrist with no clear diagnosis. I'm wondering if anyone here is caring for someone with similar symptoms.

- he started to get unwell in about 2008. This manifested as extreme anxiety and (briefly) self harming
- he is still extremely anxious and unwilling to be left on his own for even short periods of time
- has has progressively lost affect or will; he doesn't turn taps off, close doors and so on. I don't think he would wash unless explicitly told to.The most he can really do for himself is make a cup of coffee
- he mutters to himself all the time
- he has developed a very sweet tooth
- he obsesses about things (if someone is due to come and see him he keeps asking if they are coming)
- he sometimes gets up in the middle of the night to eat breakfast
- he sometimes gets very confused. He recently disappeared on a trip to Tesco with my Mum. He was found by the police trying to walk home thinking that she had 'forgotten about him'
- he has no short or long term memory problems or problems recognising or remembering people
- he is not in any way agressive, more withdrawn. He cannot hold a conversation, but will respond to questions.

He is 77 years old.

We are at our wits end because no one seems to know what is wrong with him. Dementia of some kind has been mooted but never diagnosed (it was suggested some years ago that he may have lewy body dementia but this diagnosis was withdrawn), as has some form of psychotic depression (he is on anti-psychotic medication).

If anybody does have any suggestions or advice (we feel utterly isolated from health providers now) I would be enormously grateful to hear from you.

With thanks,

Tim

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-28-2013, 08:11 AM   #2
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Can't Get A Diagnosis

Quote:
Originally Posted by Foolishfriend View Post
Hello,

My Dad has a psychiatric/neurological condition and we are being pushed between neurologist and psychiatrist with no clear diagnosis. I'm wondering if anyone here is caring for someone with similar symptoms.

- he started to get unwell in about 2008. This manifested as extreme anxiety and (briefly) self harming
- he is still extremely anxious and unwilling to be left on his own for even short periods of time
- has has progressively lost affect or will; he doesn't turn taps off, close doors and so on. I don't think he would wash unless explicitly told to.The most he can really do for himself is make a cup of coffee
- he mutters to himself all the time
- he has developed a very sweet tooth
- he obsesses about things (if someone is due to come and see him he keeps asking if they are coming)
- he sometimes gets up in the middle of the night to eat breakfast
- he sometimes gets very confused. He recently disappeared on a trip to Tesco with my Mum. He was found by the police trying to walk home thinking that she had 'forgotten about him'
- he has no short or long term memory problems or problems recognising or remembering people
- he is not in any way agressive, more withdrawn. He cannot hold a conversation, but will respond to questions.
I marked some of the stuff you mentioned above in bold. These are the signs for dementia. I know this because my late FIL with severe Alzheimer's had these symptoms. Your Dad lost his short-term memory. So he repeats himself when he knows someone is coming. He got lost because he could not find the place to come back on the trip. He gets up in the middle of the night because he is confused with the timing day and night. He doesn't want to wash because he forgets the steps to wash and doesn't understand why he needs to be clean. He forgot to turn off the water or close the door because he doesn't remember that he needs to do that. He lost the inhibitions as regular person. He is becoming frustrated and confused so he withdraws.
These are classic examples of dementia. To be honest, while the specialists don't know what is the exact diagnosis, this is dementia for sure.
In the mean time, you need to focus on caregiving. At least ask the doctor write out the diagnosis "dementia" so people know that he is sick although they are not sure the type of the dementia.
Your issue is not exactly about the diagnosis although it would help more in terms of treatment. In the mean time, you have to understand that he lost short-term memory although he knows family members. It is like moderate stage.
Don't argue with him or blame him. Gently ask him to take a shower or wash his hands. If he doesn't, go to the bathroom with him and guide him. He doesn't know if the water is warm or cold and you need to adjust the water for him or he would be afraid of water which has different water temp. to him.

Instead of focusing on arguing with the doctors or debating with them, the family should realize that Dad needs planned caregiving now. You need to see that he forgets and repeats. Bear with him and gently guide him for anything. He should not be left alone while going out. He should not drive. Please note that Dad may try to cover up his defects so he may say something to prevent you from helping him.
Please post more here for support.

Hugs,
Nina

Last edited by ninamarc; 01-28-2013 at 08:25 AM.

 
Reply With Quote
Old 01-28-2013, 10:54 AM   #3
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,144
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Can't Get A Diagnosis

Actually everything you said Tim points to a cognitive problem rather than just depression. I did wonder when you said he had no short or long term memory problems yet he can't remember that Mom is at Tasco, eats breakfast in the middle of the night, gets very confused, etc. Even the withdrawal you mentioned can be a result of memory issues. If you don't remember it's easier to just withdraw.

Can I assume you are in the UK? Do you have a choice of going to a different doctor or asking for a second opinion? Either way my suggestion is to keep asking for help. Find new reasons to ask for re-evaluation. Ask for a consult with a cognitive testing facility. Do not be happy with vague answers. Ask pointed and specific questions and what can be done about them. Write out all symptoms, questions, and episodes of concern so that all information is transferred to the doctor. We tend to forget important facts in the rush of an appointment and if it is written out we have it there to remind us. If you are not satisfied with the answers you get or think the doctor is not understanding what you are saying, then say it again and ask more questions. My best advice is to just don't give up.

Love, deb

 
Reply With Quote
Old 01-28-2013, 01:09 PM   #4
Senior Member
(male)
 
Join Date: Apr 2012
Location: New York
Posts: 269
Luau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB User
Re: Can't Get A Diagnosis

I, too, took note of your statement that your Dad had no short or long term memory problems. I am not doubting you, of course, and I am simply wondering on what basis you made that statement.

My spouse is displaying some pronounced signs of memory lapses. However, on the surface, it is easy to that are no memory issues. She still passes her MMSE, for example. For her, there doesn't appear to be wholesale memory deletion. Rather the lapses are punctate and sporadic, like little random holes here and there. The best I can describe it is like reading a complete paragraph, only that her paragraph has an occasional missing or altered word. Many times, the true meaning of the sentence still comes through, but on occasion, not.

 
Reply With Quote
Old 01-28-2013, 03:55 PM   #5
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Can't Get A Diagnosis

Sometimes cognition problem doesn't just show memory loss. It also shows the judgment flaws and understanding of the world around him.
e.g., the demented person has trouble reading, but it doesn't mean he may not be able to read it out loud. Only that he would misunderstand the situation. e.g., my late FIL once was able to read this newspaper article beautifully. It is about a lost dog that was found. He was so confused and got very upset about that dog. It was not his dog. He thought it had to do with him. He had trouble understanding what was going on? Why the dog got lost and he was asking some question which we had no idea what it was. We just knew that he had trouble with that dog and the situation with the dog. The key is it is not about his dog and his dog died long time ago.
The other point I would like to say is, the person often lies about the memory loss or confusion. e.g., my late FIL would lie to tell the doctor that he took a shower at night, but the doctor could see that he didn't take a shower for quite some time. When he could not learn the cell phone, when he had someone from his home country to help him for a short time, he claimed he knew the cell phone and that that guy was his best friend. Sometimes they are in their own world and we can hardly realize that it is not our reality that he is talking about.

Hope this helps,
Nina

Last edited by ninamarc; 01-29-2013 at 08:22 AM.

 
Reply With Quote
Old 01-29-2013, 05:21 AM   #6
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,144
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Can't Get A Diagnosis

Luau, that is how it begins and why it is so easy to dismiss. It is not just a fall into no memory but little bits of memory that are not made here and there. These missing pieces are filled in using context. It becomes a logical flow for the loved one with dementia. Many times they can convince us that it is truth as well. In the first few years, you could listen to Mom's stories and they sounded completely logical... unless you knew the facts and then you could pick out the discrepancies.

If it is Alzheimer's then the first part of the brain effected results in the behavioral issues that is truly the first signs of dementia beyond these little holes in the memory. They lack good judgement, lost social norms, and respond irrationally to perceived situations (which may be warped by their memory holes). They do not lie but rationalize what they know. The problem is that what they "know" is different from what we know. It goes back to those little holes in the memory.

Example... my Dad had been diagnosed with Vascular Dementia and Mom accepted that he could not remember. She was having some cognitive problems but she had a diagnosis of Depression to explain the symptoms she was having. A window was broken when only Mom and Dad were at home. It was not an intruder because it was broken from the inside. According to Mom, Dad must have broken the window even though he said he did not. It made sense. But it was Mom with the little cut on her arm. When it was mentioned that she had broken the window she became hostile. How dare we question what she knew!? She knew Dad had memory loss, she didn't remember breaking the window, so it had to be Dad that did it and didn't remember it She was expressing what she perceived, just as we do. The only problem is that she has holes in her memory.

Note that I said there that she became hostile. We challenged what she perceived as the truth. It was not OUR truth but it was HER truth. She was arguing for what she truly believed. That is where the center of the brain which controls judgement, social normals, and reasoning comes into play. You and I would rationalize, stay within socially acceptable responses, and use logic. That part of the brain being damaged, she went overboard in her denial and anger. She even took a swing at Dad when he said he didn't do it even though she knew he could not remember if he did.

Yes, personality does have something to do with responses but you can't base current responses on past behavior or personality. My Mom would not hurt a fly. She was the champion of all who were abused. Yet she was taking swings at people. Dad had his moments as well. So you truly have to be aware of violence related to dementia... and know that it is not something you or the patient can control.

Love, deb

 
Reply With Quote
Old 01-29-2013, 08:26 AM   #7
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Can't Get A Diagnosis

I understand that professionally the health professionals don't like to say the demented patients lie or are crazy. Please note that in terms of other people's norm, the majority people who have no knowledge of dementia, they see it as a layman term or regular thing: they lie or they are crazy or they cover up.
I understand it is not the "lie" or "crazy" since the demented person is in his own reality, but for the families and friends, that is what they see at first. I understand it is the memory loss and holes, but when it shows on the outside, it drives people crazy at times. When we had no idea it was dementia, my late FIL's cell phone episode drove me crazy and I felt he was not sincere when we tried to help him. Now I see it is memory loss and dementia. Such layman term doesn't mean it is a lie or that he is crazy literally. Just some expressions.
Even my FIL himself also said once that he was insane because he didn't realize the caregiver wais there cooking.
I think the old concept was leaning toward insanity so he denied it strongly.

Nina

Last edited by ninamarc; 01-30-2013 at 03:38 PM.

 
Reply With Quote
Old 01-29-2013, 09:02 AM   #8
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,144
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Can't Get A Diagnosis

When we try to explain this disease related to "normal" it appears that our loved ones are "just being difficult". My mission is to blow holes in that theory for those that are just beginning on this journey. When you can understand the way a person with dementia thinks and why they do the things they do... it is easier to understand and accept the abnormal behaviors. It is up to those of us that have been there to debunk the first impressions of them being crazy prevaricators. Those with dementia are not crazy... they have brain damage caused by a disease. They do not lie but speak THEIR truth. They are doing the very best they can with an altered brain which limits their cognitive abilities. It is up to us, the cognitively aware, to understand where they are and adjust our thinking accordingly. Yes, there was a time when I thought Mom was "just being difficult" but I quickly figured out that in reality she had a progressive degenerative brain disease. It is a process of coming to terms with the fact that it is a disease that damages the brain and therefore the way they think. I don't want to say anything that perpetrates the belief (and it is out there) that it is a mental illness or somehow they can control what is going on in their mind. It is critical to spread a realistic awareness of what this disease truly is

Love, deb

 
Reply With Quote
Old 01-29-2013, 10:16 AM   #9
Senior Member
(male)
 
Join Date: Apr 2012
Location: New York
Posts: 269
Luau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB User
Re: Can't Get A Diagnosis

Quote:
Originally Posted by Gabriel View Post
When we try to explain this disease related to "normal" it appears that our loved ones are "just being difficult". My mission is to blow holes in that theory for those that are just beginning on this journey. When you can understand the way a person with dementia thinks and why they do the things they do... it is easier to understand and accept the abnormal behaviors. It is up to those of us that have been there to debunk the first impressions of them being crazy prevaricators. Those with dementia are not crazy... they have brain damage caused by a disease. They do not lie but speak THEIR truth.
Indeed. For all of us who are just beginning this journey, Being informed is only the first step, and veterans like Deb and Nina have done wonders to get folks on the right track. However, the next step is up to us, and that is to translate this knowledge into everyday practice. The difference in how I approach daily issues today is a world's difference from a year ago, and I no longer get as personally ruffled. Nevertheless, I still get caught once in a while by some of the more unexpected and "creative" antics. I also find a sense of humour to be a good asset.

As for lying, I am not sure I agree entirely. All people will tell a white lie every once in a while. For example, one may tell a friend she was busy and could not go out, while she really wanted to do something else with another friend but did not want to hurt the first friend's feelings. I think, sometimes with cognitive impairment, the ability to judge when it is appropriate to tell a white lie is diminished. Hence little white lies seem to take over. I have certainly seen that in this household.

 
Reply With Quote
The Following User Says Thank You to Luau For This Useful Post:
ninamarc (01-30-2013)
Old 01-29-2013, 10:59 AM   #10
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,144
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Can't Get A Diagnosis

Yes, the little white lies are part of our social norm. They do use them to distract.... just as we do. And you are right that their ability to limit the little white lies does diminish. What I was talking about are the tricks the mind plays on them. When they do something that they don't remember and say they didn't do is what I was including in the not lies list. As in Mom with the window. She didn't lie, she just didn't remember doing it so she was telling her truth. This is also what happens when they accuse others of stealing or lying. If they moved something and don't remember moving it, then somebody else must have moved it. Their brain will come up with a likely suspect. It is exactly what we do. We respond to our truth as we perceive it. In many ways they are acting just as we do but it is exaggerated due to their limitations and a product of their misconceptions due to the cognitive limitations.

Sure it can get to you from time to time. If it didn't then you earned your spandex super suit! Knowing how the demented brain works does help though. As you said, when you know better you do better It is definitely a process....

Love, deb

 
Reply With Quote
Old 01-29-2013, 11:10 AM   #11
Newbie
(male)
 
Join Date: Jan 2013
Posts: 2
Foolishfriend HB User
Re: Can't Get A Diagnosis

Thank you all for taking the time to write. You all made a number of very helpful points which will allow me and my mum and dad to plan for the future.

When I said Dad didn't have memory problems, this was based on cognitive testing that he has done, but also on the fact that he doesn't have any problems remembering things - I could ask him about anything that happened 20 minutes ago or 30 years ago and his memory would be better than mine. His difficulty now is with processing information.

With thanks,

Tim

 
Reply With Quote
Old 01-30-2013, 03:35 PM   #12
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Can't Get A Diagnosis

Tim,

You can try some trial on Dad's behavior and see what is going on. e.g., if he won't wash, bring him to the bathroom and see what is going on. Is he just lazy or depressed to wash, or he doesn't know how to use the water. When you talk about something, ask more questions to see if he really understands. Sometimes if you just ask it superficially, he may be able to answer it perfectly.

Usually the long-term memory is still intact until late/severe stage so at this point, your Dad may be OK with it. My late FIL didn't know why he needed to wash his hands when he was sick with Alzheimer's in early stage but he was able to remember things at that time. He forgot more later on.
As for the conversation you have with Dad 20 minutes ago, it really depends on the topic. To be honest, my late FIL remembered everything that was close or dear to him (e.g., his own research work,) but he didn't remember about going out and that kind of thing.
It is very hard to detect it in the beginning for early/moderate stage. Also, the demented person likes sweet and strong flavored food because he would lose his taste sense gradually too.

Hugs,
Nina

Last edited by ninamarc; 01-31-2013 at 08:41 AM.

 
Reply With Quote
Old 02-05-2013, 08:45 PM   #13
Newbie
(female)
 
Join Date: Feb 2013
Location: Fort Worth, Texas USA
Posts: 5
TXwriter HB User
Re: Can't Get A Diagnosis

I really feel for you! I've had many of the same confusions during the progression of my mom's dementia. Don't be misled: the holes are there, and they will widen over time, and more information and ability will fall in.

The first sign I had of my mom's struggle was her finances. She spent 3 days obsessing over a 2 cent difference between her checkbook and her bank statement, to the point of not sleeping or eating. I found out about it when I arrived to take her to lunch and found her in tears. I couldn't understand what was going on -- I thought it was an aberration brought on by stress..

Slowly, she began mixing up days of appointments. Soon after, she began to forget the day and then the month, even if she had a calendar and marked it. Then she began to distrust clocks and thought they were always wrong.

None of that had much to do with memory loss -- it's cognitive loss. I began to see the memory part of it after that, when she began to misplace objects and hide things, and then forget names, faces and events.

The progression can be very misleading, and I think it's all too easy to seize on a "good day" as a sign you were mistaken ... when a good day is the exception, not the rule. I hesitated making hard decisions because I thought I might be overreacting.

I wasn't. I was avoiding reacting, which is completely different.

It isn't just that an ALZ patient is living in their own reality. It's also that they desperately want and need to "stay normal" -- which means they will go to great lengths to conceal, evade and cover up problems for as long as they can -- and well past the point where it's sane to do so.

I hope that helps, and I hope you get the help you and your dad need.

 
Reply With Quote
Old 02-06-2013, 08:17 AM   #14
Senior Member
(male)
 
Join Date: Apr 2012
Location: New York
Posts: 269
Luau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB UserLuau HB User
Re: Can't Get A Diagnosis

Quote:
Originally Posted by TXwriter View Post
It isn't just that an ALZ patient is living in their own reality. It's also that they desperately want and need to "stay normal" -- which means they will go to great lengths to conceal, evade and cover up problems for as long as they can -- and well past the point where it's sane to do so.
I think there is a lot of truth in this statement, especially for the early stages of cognitive decline. They will look at every instance and go out of their way to proof to us that they are cognitively okay, as my DW does almost continuously. She would recite a TV commercial to me, and even quiz me for the name of the horse on the commercial. ... because she remembered the name and I couldn't! Whether rightly or wrongly, I want to grant her the grace and dignity by letting her win those "arguments". However, the frequency with which she brings up these mental exercises really and sadly means to me that she is really aware of her condition, and that she is scared stiff. I mean... who won't be? Sigh....

 
Reply With Quote
Old 02-06-2013, 04:40 PM   #15
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,144
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Can't Get A Diagnosis

I agree with that statement as well. They do want to be "normal". Mom seemed to know something was amiss long before any of us caught on. She figured out that depression had many of the same early symptoms so she got herself a diagnosis of depression. End of story... NOT! She couldn't remember to take the medication but had convinced herself that was her only problem.

I also agree that the first signs I noticed had to do with the ability to use technology, ability to take care of her financials, and matters that she needed to use logic and judgement. She did some of the strangest things! The memory issues were black holes of nothingness. She would leave a pot on the stove until it was black and then hide it. If it ever resurfaced she had nothing to do with it. The things she forgot were gone as if they never happened. But the brain filled in the blanks with imaginary facts that made it all ok. If you didn't know there was fantasy and gaps in memory she would convince you all was fine.

Yes, the good days will make you second guess your conclusions on the bad days. We want to be wrong. But the earlier you figure it out the better for everybody.

Love, deb

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Aricept
Aspirin
Ativan
Morphine
Namenda
  Reminyl
Risperdal Seroquel
Xanax
Zoloft




TOP THANKED CONTRIBUTORS



Gabriel (758), ninamarc (157), Martha H (124), meg1230 (93), angel_bear (68), jagsmu (55), Beginning (51), TC08 (44), ibake&pray (43), debbie g (37)

Site Wide Totals

teteri66 (1180), MSJayhawk (1006), Apollo123 (906), Titchou (850), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 06:16 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!