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 Dad (83) not yet diagnosed but his symptoms sound like LBD 
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Joined: Mon Sep 30, 2013 11:14 pm
Posts: 10
Post Dad (83) not yet diagnosed but his symptoms sound like LBD
Hi, I am new here. I live cross country from my parents-making this situation tough to manage. :cry:

My Mom (82) is currently dealing with accusations of infidelity-with the 22 yo grandson of a neighborhood friend. Dad's behavior has always been sulky and we've had to walk on eggshells with him for years. This "infidelity" situation is radically different. He has had 3 episodes over the past 2 months. They last about a week and then disappear like nothing ever happened-leaving my Mom reeling.

Dad is in the middle of another angry episode and he is not pulling out of this one like he did in the others. He says that Mom has been unfaithful and that he'll never forget how he's been treated. In an email, he tells me that everyone would be happier if he'd die from a heart attack.

The weekend of September 21st, Dad saw an apparition in his bedroom. He thinks it might have been my Grandma (his Mom who passed 11 years ago) because it occurred on her birthday. He was not scared by this “ghost” and actually was reassured and was proud to share what he had seen.

He's not sleeping and complains of headaches. When I talk to him on the phone his voice is different. Not only isn't he really acting like himself he doesn't sound like himself either. His voice is whiny and weak. He slurs his words at times.

When Dad speaks to or interacts with long ago friends and others-his mood is lighter and he’s happier. Mom is the enemy. It’s very much a Jekyll & Hyde situation. This is why it’s taken such a traumatic turn for us to realize that this is not just, “Dad being Dad.” Something is wrong. He doesn’t think anything is wrong though.

I started reading about Alzheimer’s looking answers and that lead me to learn about Lewy Body Dementia. So much about LBD fits Dad’s behavior-especially the accusations of infidelity. As you can imagine, I am trying to find any way to help Mom deal with this. She does not deserve to be treated like this by Dad. Mom said tonight on the phone, “He looks at me with hate in his eyes.”

Any words of advice for the the infidelity accusations? Mom stays out of his way and does all she can to not upset him-but just a look or tone of voice will provoke him so it's a no win situation.

Next week they go into the dr. for an annual check up and the dr. knows of the situation. Mom went in a week ago because she felt her blood pressure was sky high-and it was. The dr. gave her anti anxiety meds. The dr. will give Dad a memory test (which is does have problems with- if it happened today he doesn't recall it but something 40 years ago he remembers in complete detail) and told Mom he would send Dad next to a neurologist.

Thank you for listening. *sigh*


Tue Oct 01, 2013 3:26 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 157
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Hi Leslie,
Hang in there! It's a long and difficult road. It does sound like a visit (for your Dad) to a neurologist who has experience with LBD would be a good first step. There are meds that help with hallucinations, etc. and it helps everyone to know it's the disease talking, not your Dad.
My Mom, too, went through the infidelity phase. She thought my Dad was having an affair with her caregiver - but by that time we knew it was LBD but she could still be sooo convincing. Glad you found the website!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Wed Oct 02, 2013 12:50 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Welcome, Leslie. It is tough CGing from a distance - I did that for several years myself so I know the additional challenges that creates.
Your poor mom - this seems like a pretty common LBD symptom, from what I've read on this forum, and maybe some meds will help. There may not be anything that will help that symptom, though, so you should talk with your mom about the stress of CGing and what it is doing to her. The horrible thing is, as this disease progresses, so do the mental, emotional and physical symptoms.

It is not easy to have this discussion, but you and she will find it easier in the long run if you soon talk about what happens to your dad when she can no longer risk her health to take care of him full time. Even now it sounds like she needs to get out of the house and get breaks. Does she have someone coming in to help her so she can get away? Has she looked into places where he can live when she no longer can deal with the demands of 24/7 CGing? CGs, especially elderly ones, often die before the person they are caring for because of the stressful demands of CGing, so it's really important you help her find ways of taking care of herself.

Are all the legal documents in place, like POA, wills, advanced directives, etc.? Hang in there. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Oct 02, 2013 7:21 am
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Joined: Mon Sep 30, 2013 11:14 pm
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Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
I talked with Mom about all the important paperwork and everything is in place she says. They took care of the medical directives last year at the same time they updated their wills.

Mom has been able to get out of the house for a break to do gardening but with winter around the corner she is going to be more house bound than ever. Her friends in the neighborhood are all older and have had their own health issues this year and there has been less interaction with them. Her sister lives out of town. Dad has been very controlling and has been preventing her from driving but she has been addressing this-thanks to a tip I read on the boards (thank you!)-by requesting to drive every time they go out to run errands and actively getting in the drivers seat before Dad can object. Thankfully, their dr. groceries etc...is very close by.

I have been trying for years to get them to move closer to me or at least closer to family (about 150 miles away). Dad insisted they stay put because of his cancer dr. I have begun researching living arrangements now close to me and closer to family. I will suggest as the diagnosis proceeds that she at least get a visiting nurse to come by weekly to check on her health and Dad's too. This will be resisted though I think.

Dad's latest thing is to listen in on phone calls. He hates wearing his hearing aids but now he leaves them in as long as possible so he can monitor what Mom says on the phone. Telemarketer calls and robo calls that hang up have been interpreted as "that guy" is calling Mom because they hang up when Dad answers. When Mom is in the yard pulling weeds she said she sees him looking out windows keeping an eye on her. If she spots him he quickly ducks.

This change happened so fast. It's hard to comprehend. :(


Wed Oct 02, 2013 1:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Leslie - do you know the details of their POAs, etc.? If they left each other as POA and they both are elderly there will be problems down the road. I'd go over all of those documents with them, afterall, it is for their benefit that they have appointed you or some healthier and presumably younger person at the point that something happens to one of them.

Good luck. You have a lot to deal with, so come here for support any time you need it. I wish I'd moved my dad closer to me - his house was 500 mi. away and once he moved to the ALF he was 540 mi. from my house. It was a haul every few weeks to drive there and try to do everything I could for him and his house which needed some work. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Oct 02, 2013 8:06 pm
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Joined: Mon Sep 30, 2013 11:14 pm
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Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Thank you everyone for the helpful replies. I talked to Mom again about what's to come next and her expectations. She doesn't think she needs help yet (stiff upper lip!) but I told her about what I have read on this blog about the stresses a caregiver is under and how their health can be severely affected while taking care of their LO. She understands. So, as we go forward their family dr. and I will encourage and assist Mom with the in home and medical help she needs.

October 9th is the first appointment where Dad will be "covertly" evaluated. I have sent the dr. a letter explaining my observations and documenting the dates of his angry "infidelity" episodes including two very depressing and crazy emails he had sent me. I'll post again after that. Again, thanks for listening. I wish my Mom was computer savvy. This board would be a great comfort to her.


Thu Oct 03, 2013 1:37 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
All the best to you and your family Leslie. Let's hope the dr. can prescribe something that will help.

Maybe you can print out some of the postings that you think would be most helpful to your mom and have her read them. That's what I had to do for my sister when our dad was still alive, since she won't use her computer. It would have been really helpful to have her have the info. at her fingertips, but she is computer-phobic too! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Oct 03, 2013 1:56 pm
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Joined: Mon Sep 30, 2013 11:14 pm
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Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Mom and Dad had their annual check ups today. The dr. did not give Dad a memory test. That is happening now next Thursday. The dr. did think that Dad is in a depression and discussed that with him. That infuriated Dad and he told the dr. he didn't need a "crutch" and said he won't take any meds for it. He is being agreeable enough though to take a memory test-partly because they have another reason to go to the dr. office that day.

So, we'll see how it goes. Meanwhile Dad continues to listen in on any phone call that Mom makes.


Wed Oct 09, 2013 9:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Leslie - do you think your dad's dr. is well-versed about dementia, particularly LBD? So many health care providers are still pretty clueless about LBD so this may be an opportunity for you to do some educating... All the best, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Oct 09, 2013 9:15 pm
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Joined: Mon Sep 30, 2013 11:14 pm
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Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Well, my Dad passed the 30 question memory test-30 out of 30. I am not sure what to think now. Amazingly, he has agreed to take anti-depressants and will see the dr. again in 2 weeks.
Believe it or not, he started in again with the charges of infidelity-like clockwork- in the car on the way to the dr. appointment. Mom's blood pressure is sky high again. They are back on the terrible emotional rollercoaster. He is latched onto this idea and his mind cannot be changed. This belief is so impossible and irrational. It has to be medically driven. No sane person could think like this.
Ugh. Not sure what the next step is but marriage counselling or divorce. I'm not sure how pro-active the dr. will be going forward.
*sigh*


Thu Oct 17, 2013 8:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Sounds like IF your dad has dementia, he is still at the point where he does show time really well. My dad did really well (not 30/30) the 1st appt. with the psychiatrist, but within a few months he was unable to keep up that level of show time. He had all sorts of ways he'd devised to pass the questions (he'd write down the president's name multiple times, keep in next to him at the ALF and he'd study these things so he could "pass" next time he was asked.)

Now the question - does he really have dementia or is something else going on? Has he been checked thoroughly by a neurologist for some other brain issue? Has he had a brain scan?

Please encourage your mom to do all she can to take care of herself. Maybe she needs to stay with someone else until your dad's situation is figured out? Keep us posted, and hang in there. You have some big challenges and hopefully something will get figured out. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Oct 17, 2013 8:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Memory tests are, IMHO, meaningless in LBD. Unlike with Alzheimer's, early symptoms of LBD have more to do with executive function, paranoia, hostility, illusions and hallucinations and visuospatial perception as well as muscle stiffness and autonomic nervous system dysfunction. As has been suggested, he really needs to see a neurologist who specializes in PD and LBD-type disorders.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Oct 19, 2013 12:22 pm
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Joined: Thu Apr 21, 2011 9:07 pm
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Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
It sounds like they gave him the standard Mini-Mental Test exam (30 point version.) It is not particularly sensitive to early dementia, and not at all to neuropsychiatric problems like delusions and hallucinations. What you probably really need is a thorough neuropsychology work-up and neurologic exam by a dementia specialist, preferably one with some expertise in Lewy body, and also diifferential diagnosis of other things (fronto-temporal dementia? side effects of meds? quite a variety of possibilities, though much of what you have said is consistent with LBD.

My mother also scored very high on it the first time she was tested. I got her primary care doc to refer her to see one of my colleagues, who is a very noted dementia specialist. His staff gave her something like 45 minutes of cognitive and neuropsychiatric evaluations and tests, and he did a thorough history both with her and with my dad and me as informants. He considered a diagnosis of Alzheimer's but the relatively good memory argued against that, as well as her history of delusions. He also identified some interesting and subtle visual-perception problems that are characteristic of LBD. He also touched base with a couple of our collaborators, one at Mayo and one at UCSD, who concurred with the LBD as primary diagnosis.

Anyway, it's a tough disease to diagnose, especially since there is no definitive biomarker test yet (neither neuro-imaging nor blood nor CSF samples.) Not sure where you and your parents are located - very tough if they are so far away! - but someone here can probably suggest a good specialist near them, if that will help.

Good luck to you - it is a hard path to walk, but you sound like you are doing a wonderful job even from far away. This site is a terrific resource, and folks very supportive of each other, which helps so much!
Laurel

_________________
Laurel - mother (97) diagnosed April, 2011, with LBD


Sun Oct 20, 2013 11:59 pm
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Joined: Mon Sep 30, 2013 11:14 pm
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Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
Hi again everyone,
Yes, this certainly is a difficult situation. I live cross country from my parents (they are in Ohio) so my ability to hop on a plane every time there is an incident is unrealistic. *sigh*

My Dad sent me a threatening email over the weekend. He is angry that I am defending my Mom. I know what I have read on the boards that if I can distract or just be agreeable that it may calm the situation. I tried that and he said I was being patronizing and that, "he is not some senile old man who needs to be led around by the hand." His email threat was to cut me out of the will. His only daughter. My husband and I have our own savings and such so if he ultimately decides that is what he must do...okay, whatever.

I spoke to my Mom about leaving for awhile-get out of that toxic situation to go stay with her sister or come out to stay with me. She doesn't want to leave Dad alone because he's sick. She is afraid of what he might do if he's alone.

New information that came to light yesterday why my Dad watches my Mom work in the yard and flower beds. He does this because he believes "her lover" is waiting for her in his car down the block. So, Dad makes sure that Mom knows she is being watched so she doesn't sneak away.

Their dr. does have a lot of elderly patients but I am still deciding how proactive he is. He managed to Dad on anti-depressants-which after 3 days on them dad has declared they don't work and he's going to stop taking them. On Friday, I sent the dr. an 8 page essay outlining all of the incidents with my Dad, the apparition and the dates when they occurred, the changes in his voice and the tone of his emails...including 2 really awful ones about Mom's infidelity and another where Dad states everyone would be happier if he died. I've been tracking his "infidelity" outburst and they seem to occur every 16-14 days. In my letter and specifically mention LBD.

My question though- can a dr. tell his patient that, " you must do this or that because you are showing signs of X."
Dad thinks absolutely nothing is wrong-can he refuse? What to do then?


Mon Oct 21, 2013 2:29 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Dad (83) not yet diagnosed but his symptoms sound like L
No, a doctor can't force treatment on a patient. When my husband's neurologist first prescribed Exelon for him, he found out what it was for and refused to take it. It was another year before we convinced him to try the patch. It helped immensely for a while.

If the anger and hostility get out of control, he can be involuntarily committed for mental health evaluation for [I think] 72 hours and would probably be medicated then. Unfortunately, they sometimes use bad drugs for LBD, like Haldol. If he sees a doctor or goes to the hospital, make sure you have some information with you such as one of these wallet cards http://www.lbda.org/content/lbd-medical-alert-wallet-card or at least print out the info on drug warnings.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Oct 21, 2013 3:15 pm
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