I have never posted on this forum before but thought I would share. I am from a family of eight children, and I am the youngest girl (32).

I had never heard of Lewy Body Dementia before this year, but it has forever changed my life and those of the rest of the people in my family. My Dad was diagnosed with LBD in April, and it was a relief to finally have a diagnosis. We had known for some time (guess we were in denial) that things just weren't quite right. He would get confused easily when engaged in conversation and just have a really "lost" look on his face. Estimate is that he has had LBD for about three years. I would guess he is on the normal course for LBD, but it certainly seems to be going very fast. He is in good health (thank goodness) and loves to visit about the past, but retention of new information is in bits and pieces, so we are constantly checking with Mom to confirm/debug his conversations. In my opinion, he is mentally at about the level of a 5- to 10-year-old as far as accomplishing tasks of daily living. He can dress himself but has difficulties with that, and we recently discovered that he no longer knows how to use a telephone other than to answer it. Before his driving priviledges were revoked, he would go on an errand and be gone for hours. He would deny it, but we knew he had gotten lost and spent all that time trying to find his way back home. (They have lived in the same house and on the same farm for nearly 40 years.)


I am spending a great deal of my time when I visit (I live a few hours away) trying to archive the past. I have tape recorded many conversations with Dad telling stories from the past, gone through photo albums with him, and really kind of prodded him for information that he is still able to share about himself and his life. I originally had wanted to create a "heritage book" (which I still plan to do with old photos and stories) but had to revise my timetable to get the information from Dad recorded before it is gone forever.

I know I am probably rambling, but none of the close friends, or anyone I associate with for that matter, can relate, so it is comforting to know I can share my story here.

It is strange to see my Dad change from being the 'man in charge' to a completely different person. (I tell my husband all the time, he never really got to meet my Dad.) Mom's role has completely changed to caregiver, and she's fine with that, I think, but we know that in the near future we will need to get some assistance for her. It is getting tough for her to leave him alone while she runs to town on an errand or whatever. If anyone has suggestions, I would certainly appreciate any input. -- youngestgirl

youngestgirl u said it so well they do cover for each other and that is a big problem, oh well ur doing great, knastew i screwed up on my typing, i meant not to play by others rules of life and tomake their own. it works really great, communication flows. hugs to u both. keep in touch. is the lby site a good one, looking for all the info that ican. thanks

Knastew-I've run into the communication problem with my parents as well. Found out some things from a cousin of mine that had been happening with Dad, and I couldn't understand why I hadn't heard from straight from Mom. Have since figured this out--she doesn't always tell me the "whole story" about things that happen because Dad is in the room or nearby and she is afraid he will hear her talking and will be either embarrassed or angry. Makes be involved in their lives a little more challenging! I'm becoming more of a detective and learning to ask things of mom on the phone so she can answer yes or no, although that doesn't always work either! Sometimes, I just make her promise me that she'll tell my brother when he stops over for a visit, and then I can find out from him. Seems like the old telephone game, doesn't it?

I'm going there for a visit this weekend, and I'm anxious to see if Dad calls me by name or not. We realized after Christmas that he hadn't called any of his kids by name...except my brother who lives near them.

I did check out the LBD Group over on yahoo...although I haven't posted anything there yet. --youngestgirl

knastew, sigh with u, it is so sad when it is this way. that is why i worked so hard on being real with my own kids so they and i can talk about what is real and play by someone else's rules of life, but then again it is always hard when someone cannot be real with me for whatever reason.i'm a cut to the chase person and it gets me into trouble alot, however sometimes the reality is that people will be themselves and i have to work with where they r at. u r a good soul and not alone hugs hang in there

Hi all,
Thanks for the word on NSAIDs. I will have to check and see if that is a factor at work with my Mom. My dad is the one responsible for giving Mom her medications, so I will have to make sure it is information he has, as well. We had a little taste of what it would be like if something happened to my Dad this past week. He got a really heavy head cold and was struggling mightily to get everything done. I went over to bring homemade soup and a few other easy to warm-up things. I get so frusrated with him, though, because he doesn't ask for help, is resistant to having help in the house (a companion/aide is still in debate), but then is so grateful for the little bits of help I can offer. I told him, gently, that I cannot read minds and am not always good at decoding the messages when we are on the phone. Part of it is that he doesn't want to alarm my mother/give her something else to be anxious about, part of it is that "man thing" about asking for help, part of it is he doesn't want to worry/bother us, another part is probably that he doesn't want to be intruded upon with our ideas/suggestions/interventions. It makes for a situation in which I never quite know what the real situation is, even when I am able to get there to put my eyes on it! I have tried to be as straightforward in my questions and concerns, while still trying to respect their needs for independence. Arg! As disprespectful as if sounds, I am glad this situation didn't develop until I had children! The communication patterns at this point with my 7 and 5 year old boys and my 75 and 78 year old parents can be awfully similar!
I hope everyone is doing well. I kepp you all in my thoughts and prayers. K

hello everyone!! hugs and prayers for yall. yesterday in talking with mil's doc he asked me if i was a nurse by the questions i was asking him, i feel like he gave me an a+ for all my research and studying. it looks as tho she does have parkinsons, and lewy body, plus complications from an untreated uti from 5 months ago by her family doc!! he told me the bacteria in older people colonized and so there was nothing he could do!!! aaarrrggghhhh! this is such hell tolearn and fight so hard for her for so long and if they had listened to me and helped me instead of refusing to help me, she might not be so messed up right now!! anyways my heart is with you guys.

Hi Knastew,
I found out quite by accident that it was NSAIDs that were causing problems for my husband. Last summer we went through a period of hallucinations (and my husband picked up a convenient kitchen knife and I know he would never have any intention of harming me under normal circumstances) - one day he happened to skip (refused to take) his dose of pain med and that day his problems were less severe. We have made a trade-off that it's better to be somewhat uncomfortable with pain than having a severe level of hallucinations. The longer my husband has been taking Exelon, the less seroquel he has needed. I am now quartering the seroquel tablets if he even needs it because it causes him to sleep (some of this may be because of interaction with heart meds too).

I think my husband is much more aware of his situation than others think and he has those depressive episodes also. The fluctuations I try to use to my advantage - my husband will refuse his med and I can go back a half hour later and he'll thank me for getting his med for him and take it.

I would gently keep trying to encourage your parents to accept help. For me it has been a process in accepting that LBD has changed both our lives and our expectations of our future. Two years ago we were taking care of our business, walking at the Y, and working with kids after school. About a year ago I crashed into the reality that nothing was going to be the same. That was when I made the decision to make our doctors part of my support system (my husband sees his internal med dr every month and the neurologist every two months) and I allow myself to grieve the losses - this is easier said than done because every adjustment is a loss. But I do know that it doesn't help either of us if I become ill doing this and it will be another loss to grieve when I have to accept in home help because it means another progression of the disease, this time beyond what I can manage by myself. -lula

[ January 14, 2002: Message edited by: lelca ]

Thank you everyone. Once again, I have found comfort on this board and relief that someone elses relates with what I'm going through.

We are making some progress in regard to assistance with Dad. Last Friday (January 11), Mom took him to see the Adult Daycare Center. It is a new facility--very clean and bright. There was only one person being cared for that day so mom was hesitant to leave Dad there (trying to gauge his reaction a bit), but when they went back to the car, he said to her "Well, that was a nice place, wasn't it?" She replied, "Yes, I think we'll be coming here more often." I thought she handled it beautifully--didn't go into any details with him, and he seemed accepting.

Wanted to share something pleasant with you this time instead of always frustration or questions, questions, questions! --youngestgirl

Dear Youngest Girl (and anyone else out there) I know I often sound clinical when I post. It's my way of handling things emotionally. I think, too, that since we first started dealing with this disease we have had the benefit (?) of being affiliated with John's Hopkins and a very good neuropsychiatrist and that effects the way I think and explain things....ANYWAY, the way it was explained to me is that LBD is different from Alz and other dementias in the way that it fluctuates in the course of a day, in that there are specific psychiatric features that the sufferer experiences that are not experienced in other dementias. My mom, a dove if there ever was one, has had periods of near rage and aggression. HOWEVER, when we took her off some of the meds (those meant for the Parkinson's she was origianlly diagnosed with, for instance) a alot of those aggressive tendencies dissolved. We have found that the use first of seroquel and now of chlozopine - both of which are psychiatric drugs - have made a vast , positive, difference in my Mom's demeanor and in her ability to express herself.
Every situation is different, though. I do know that one of the most frustrating features is the fluctuation of 'being there,' and being herself to totally NOT being there. That and it almost seeming as if my Mom does things on purpose to be frustrating. I've heard from others that they feel this too. The depression that my Mom exeriences in those moments when she is clear and aware of her situation can be devastating, too.

I am wondering, though, if anyone else has had similar experiences as I have had in the treatment of their loved one. I think I am always looking for validation that we are doing the right things. I haven't heard many people mention psychotropic meds in this forum. Does anyone else have any experience in that direction? Also, I am trying very hard to respect my parents desire to remain in their home as long as possible, but am frustrated by the 'foot dragging' over getting someone in the house to help out. I know it can be intrusive and is just another admission that things really are difficult.....But, as I have said before, I fear I will lose both parents to this disease at this rate.

Youngest Girl, I have just read the post frpm Lula.I know this lady as a caregiver of her husband.She is such a remarkable person.She loves her husband and all that she has done is because of this deep love.I have admired her for so long.,

If she sees that you need a source for information she will find it .She will be so much help in helping those dealing with LBD.One thing she will let you know is that she is in good health and this allows her to do so many other things.I hope this will assist you in finding answers to your recent question.

yOUNGEST

Dear Youngestgirl,
My name is Lula and I've been caring for my husband with LBD since March 2000 (diagnosed in Oct 2000). Your Christmas experience is so familiar - to me, LBD is such a different disease. The fluctuations throughout a day are just amazing. The most important thing your mom needs to know is that neuroleptic drugs (such as haldol, risperdal etc) can cause Neuroleptic Malignancy Syndrome (a shut down of heart, lungs etc) in LBD patients. I would suggest that you find a neurologist that knows about LBD (easier said than done) - our neurologist is in Omaha, NE. My husband takes exelon and a small amount of seroquel for the LBD (as well as several heart meds). We have a group for LBDcaregivers at Yahoo - you and your mom should read posts there. You will find this a very individualized disease as far as treatment with meds and handling different situations. Go to www.lewybodydisease.org and there you will find links and URL for the Yahoo group. -lula

Youngestgirl,

Here is a link to a web site that will give you a good understanding of LBD.
LBD

This should answer many of your questions.

Vicki

Thank you May, for your input! My Dad isn't on any medicines at this point (at least none that are intended to help with LBD), but I thought I should inquire about it since my aunt and uncle told Mom to hide the knives in the kitchen, etc. They seem to think he may change abruptly and get physical. Overreaction, I'm not sure, but I guess it doesn't hurt to be cautious about things like that. --youngestgirl

Youngestgirl, I am speaking from my experience.Certain medicines, that have proved to wrong, have caused my mother to be physically and verbally agressive.,

We have recently changed to a new med, and as a whole it has been ok.My mother can change so fast.She becomes so verbally nasty toward my aunt an many times me.She will become some what physical when I am inable to call her mother or take her home.Many times this will last a short time.One time it continued , non stop for 4 days.The Dr.says they believe they get a sudden burs of adrenalin and this gives them the energy to continue.We had many med, that caused such a personality change it was un believable.My mother experiences sundown and problems when she awakens in the morning.I never wake up slowly.She will be calling my name, even though she does not know me at this point,she does realizes that I am her security blanket.Thre seem to be a common denominator for all persons with AD, but one med. does not have the same positive or negative affect for all.After awhile you will know what they are going to say and try to humor them the best you know how.Many times nothing works and you hope for a short roller coaster ride.Many times you just respond in a simple but non agitating way.I will say" i will have to check, or how about that, or I really do not know.Very vague answers with the less combative tone you can manage.But many times that will not work.I have had to get firm with mother, and many times I will just walk away aslong as I know she cannot harm her self or others.It is not an easy road to travel.You will find the nitch that works, best , for you.One day at a time, sometimes 1 hour at time.

Out of curiosity, is physical aggression something that we need to look out for in my Dad? My cousin was asking me about this today, and I really didn't know how to respond. Do people with LBD or Alzheimers tend to get physically or verbally aggressive as the disease progresses? I'm just looking for a little input. Thanks. --youngestgirl

BTW, Thanks, PATS, for the great idea about the id bracelet. I got my Mom one for Christmas (I actually bought two off ebay, they were less expensive and I'm all ready for when she loses the first one.)!

Youngest Girl,
You are in the spot we were in just a few months ago (and in ways, continue to be today). My father was getting absolutely no time to himself, couldn't even go to the bathroom without my mother having to know where he was, checking on him innumerable times because she'd forgotten what he'd told her. It was difficult, but we had the support of a very good doctor, to get Mom enrolled in an Adult Day Care Center. We refer to it as the Adult Center. There was a period of transition and there are always little hiccups here and there. (My mother had never played bingo before and got confused about taking home prizes, etc) We are considering in-home care, too. My dad REALLY does NOT want to put Mom in a nursing home as long as she is able to recognize him, but even with the time off (three afternoons a week) he is struggling with all that he has to do. Because my mother doesn't require "skilled nursing care" we have to consider "companion care." That's OK, though, because that's what my dad needs, too. Someone to hang out with Mom while he does chores, or who can do some light house keeping or cooking. The problem is, it all costs money and very little of it is covered by insurance. I have proposed innumerable times that, although I am a half hour away, my Mom could "visit" with me a couple of days a week. (I am bound to my house by the kid's school/bus schedules) My parents don't want to "burden" me, though. (Burden me, please!)
ANYWAY, it all takes adjusting to. Reactions happen. Routine is king. BTW, have you talked with your father's doctor about the use of an anti-anxiety med? There are some that can be used situationally. The same chemical, serotonin, that is getting disrupted by this disease (or that this disease disrupts) is the one that is out of balance in folks with anxiety disorders, obsessive-compulisve disorders and depression.
Hope some of that helps. It has been a real breakthrough to get my dad to accept some help. He's stumbling on getting the in-home care and going to a support group for the same reasons he was resistant to using the Adult Center, he thinks he should be able to do it all himself. And I, too, am afraid that this disease will steal both my parents from me. But I am hoping that if I am persistant (in the right kinds of ways) he may see the light and let himself get more help.
Take care and know that you are in my thoughts,
K.

Youngest Girl,
You are in a very difficult place right now. Some hard decisions need to be made. Have you contacted a social worker to go over what your options are? That can be a good place to start. I understand your Mom doesn't want to be dishonest with your Dad but this disease makes us do many things we would not normally do. How does your Mom feel about having a caregiver come into the home?

Don't worry about sounding depressed. This is the place you come to for help and support. Keep us posted on how things are going.

Vicki

Had a phone conversation again with my Mom last night (reiterating things we have previously talked about) about using an adult daycare (which is $12/hr) or a caregiver to come into their home and give Mom a break. After seeing Dad so anxious at my home (she said this was the worst she had ever seen him), she is concerned that he will go once if she takes him to daycare but then refuse from that time on. I tried to explain to her the concept of telling him that "he would be helping out there"...but she hates being dishonest in any sense of the word. Also, she feels it that it is too early to put him in a nursing home, because he "knows to much yet" (and we all agree with this). This is so tough! I don't want to push my Mom into anything she doesn't want to do, but I have this fear that Lewy Body will take them both....Dad from the disease itself and Mom from the stress on her heart.

Also received phone calls last night from several of my siblings thanking my husband and I for hosting Christmas and hoping that we didn't feel overburdened. That was nice. --Youngestgirl.