Archive for December, 2008

Things have been busy around here and the Husband and I were away for a few days to visit with his family over the holidays. I’m happy to report Dad has been doing a little better than his past ballistic episodes. I’ll recap everything in the new year when I resume a regular blogging schedule. For now, I want to wish everyone a very happy, healthy and safe New Year.

All the best to you and your familes.



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Merry Christmas

Merry Christmas, friends and family. May you all have good tidings, lots of love and peace this season and the year to come.

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Christmas is almost upon us and we’re trying to remain festive despite Dad’s declining health. While Dad hasn’t been completely ballistic, he’s still experiencing horrible hallucinations and is just out of his mind. Dad’s latest issues include him believing we’re all dead and therefore can’t be ourselves as well as refusing to eat or drink anything. He’s getting so very weak and we fear it won’t be long until he ends up in the hospital, again. I’m convinced Dad’s medication regiment is out of sorts and we just need a doctor to take some time and re-evaluate his pharmaceutical cocktail. It’s just so very, very frustrating.

I was looking at photos of Dad from last Christmas and of course ended up comparing Dad’s health from last year to present day. The decline is staggering. Last Christmas I was afraid it would his last “good” Christmas and unfortunately I think I was right at the time in my thinking. This Christmas isn’t shaping up to be a memorable one for Dad. He’s so out of it and so ill with this diseases that I doubt he’ll even be able to participate in any of the gift opening or Christmas Eve Dinner.

On a slightly happier note, Sister is arriving from New York City tonight and amazingly enough, Dad does know that Sister is coming. However, Dad does not believe Christmas is Thursday or for that matter, any time soon. This year we’ll be celebrating Christmas on Christmas Eve because Dad is generally better at night. Plus, Husband and I are flying to the Hub’s parent’s house on Christmas Day to spend the holiday with them as well. So, Christmas is on Christmas Eve for this Lewy family. I don’t think it will be very jolly for Dad but we’ll count our blessings, remain strong and celebrate the holiday together, as a family.

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Lately Dad seems to be playing a game of hide and seek with our belongings. Part of his OCD tendencies is to put things away that may be out and about. He can’t rest until things are back in order and where they should be. This is fine because in a way he helps pick up the house. Well, now it’s taken a turn and things are just disappearing only to be found after much sleuthing in obscure and random places. For instance, I found my sneakers in the spare room, hidden underneath the bed’s bed skirt. Mom’s black dress pants have been  missing for weeks but they magically re-appeared last night in plain sight. Dad’s sneakers disappeared and I found one underneath the bed and the other in a random drawer.

However, Dad is taking his game one step further and some things are disappearing in to the trash. So far we have found his socks, dishes, silverware, pot holders, brand new rolls of wrapping tape, and my winter scarf all in the trash compactor. I’m sure a lot more has been thrown away before we caught on to what he was doing. I don’t know if he’s confused, forgetful or just deranged in his current quest to cull anything and everything.

Last night we made a rather unpleasant discovery in which Dad had stuffed his jeans, as well as a few other items, down the toilet. Needless to say we had a nice mess to clean up.

There are also some items that have gone completely MIA- the most notable being his glasses and watch. We’ve looked everywhere and can’t find them.  This is troublesome because Dad must ALWAYS have his watch and glasses. He goes wacky if he doesn’t have them. Dad doesn’t read anymore but he’s become accustomed to putting his glasses on after a shave. Since he doesn’t have his glasses, he won’t allow us to shave him therefore, he’s now growing a beard. He’s also completely obsessive about his watch and the time of day. It’s part of his daily bathroom regiment in which after he’s washed his hands seven times, he completes his ritual by reciting a long-winded speech about the time of day, week, month, etc. You’d have to hear it for yourself to believe it. Needless to say, he’s been a little bonkers without his trusty personal effects.

Hopefully we can keep up with his hide and seek or else a lot more is going to disappear for good.

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Amazingly enough, we managed to get Dad out the door for his doctor’s appointment the other day. It was a pretty routine check up and the GP went over the lab results in which everything came back fine. They did not do a test for a urinary tract infection (UTI), however, the doctor said there would be signs if Dad had a UTI. According to the doc, he wasn’t exhibiting any of them. For those not familiar, UTIs are common in LBDers and can completely throw their system out of whack. We were thinking that maybe Dad’s recent ballistic episodes were a result of a possible UTI, however, I guess that is not the case. Of course, Dad put on a show for the doctor and told the doc that everything was fine- no problems at all. Seriously, it’s so frustrating how he can just turn it on for the doctors. Meanwhile, minutes before he saw the doctor he was talking to his “friends” aka the people he sees in his hallucinations.

So, we’re home and still dealing with Dad’s constant hallucinations and delusions. He has such a one track mind in terms of if he gets an idea in his head he is so focused on it until the idea can be completed, resolved or whatever the case may be. In some ways, it’s unbelievable and difficult to see and manage what he deals with on a daily basis. We’ve reduced the Sinemet on our own to see if that makes a difference as Sinemet can cause hallucinations. So far, I would say the reduction has not made a difference.

I know I’ve probably been a Debbie Downer lately but unfortunately, it is what it is. Hopefully the new year will bring improvement or some sort of normalcy and then the blog will be a little happier. A girl can dream, right?

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The last few days Dad has not been completely ballistic so that’s a good thing but he’s still a handful- just a little more manageable. He’s constantly hallucinating and completely delusional and very OCD. Again, no matter what we try, nothing seems to stop the hallucinations and delusions. Also, his cognitive abilities are just completely shot. He has no attention span, no ability to reason or use judgement and seems completely unaware of things. He is also forgetting more and more. In terms of his daily basic care, Dad requires help with showering, getting dressed, shaving, taking his pills, and eating. In many ways, it’s like caring for a child. It’s very sad to see Dad slipping away.

Despite Dad’s decline, he is still very demanding and set in his ways. He’s completely dependent on Mom for everything- she’s the only one he wants to help him. Dad also started a new routine, much to our chagrin, where he has to have two dinners prepared for him each night. At least he wants to eat but he’s extremely fussy and picky about what we cook and we must always, always have two meals that he wants. If he does not like what has been cooked, he’ll throw a fit. The part that gets us is Dad does not eat dinner with us because he’s busy fussing around with this and that and won’t come and sit down. So, it takes him over four hours or more to eat. Lately he’s been eating very late at night because it takes him forever to stop and eat- no matter what we try. So, he’ll finally finish eating dinner around midnight, sometimes 1am. We’ve tried preparing just one meal and starting very early in the evening but still, he manages to throw a fit for a second meal and takes hours and hours to eat. The only reason he takes so long is because of his OCD tendencies which force him to concentrate on the current tasks at hand in his mind. He can’t do anything else until he feels those OCD issues are resolved and over.

As a result of eating all night long, it then takes Dad another three hours to get in to bed. Poor Mom isn’t getting any sleep. If she tried to go to bed in the spare room, he gets a little manic and so Mom is forced to wait until 4am to get some sleep and is up again around 8am while Dad sleeps in. Needless to say, she’s completely exhausted.

I guess we’re all coming to the realization that Dad is “gone”- he’s no longer the Dad we once knew. It’s as if there’s this other being in his body. Anyway, things were really bad for a while but hopefully it doesn’t revert back to a dire situation again. We have an appointment this afternoon with Dad’s GP so we’ll see if we can get him out of the house for it.

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I wish I had better news to report but unfortunately things are still really terrible with Dad. He is experiencing constant delusions and hallucinations- both visual and auditory. I can only imagine what he must be thinking and feeling- he has to be so scared. There’s no other way to describe what’s going on with Dad other than he’s just acting completely out of his mind. There’s just no getting through to him in order to manage his behavior.

Dad thinks the ‘Shards’ are still attacking, the Gardener and his people are in the house, his doctors and their families are dead or God is commanding him to do certain things.  He’s consumed with the fact that he has a blood clot, which he believes is in his head instead of in his lung where it really is, and that he’s going to die from it if he doesn’t get a special surgery to save him.  Dad is still extremely OCD when he’s a little clearer and when he is a little more manageable, he paces back and forth for hours talking to people- we don’t know who? He seems to be afraid of anything electrical like the TV, the trash compactor, the lights on the Christmas tree, etc.

Despite Dad being so over-exhausted, he is still fighting strong and we are definitely on guard. As a result we don’t sleep much for fear he’ll try to run out of the house not to mention that he’s up at all hours of the night. The other evening, he had Mom in a choke hold for a few seconds and then relented when we tried to prevent him from fleeing the house. When we work to get him in the shower or to take his pills, he fights us something terrible. Sometimes we just let it go and walk away but there are times when it’s just not possible.

Dad is refusing to take his medication, he’s not eating and not sleeping very much. I’m sure all of these things are adding his condition. Every now and then we can get some pills and food in to him, but it’s not consistent and stable enough to make a difference to his current state.

We feel like we’re fighting a losing battle. We just don’t know how to get Dad back to reality, back to us. No matter what we try, nothing works. It’s so sad and yet such a tiring handful to deal with constantly. We’re all completely exhausted, emotionally and physically drained.

Mom is deeply saddened and I feel absolutely awful for her. It’s extremely difficult watching Dad succumb to this terrible disease but I would think it’s even harder for Mom to face. I can only imagine what it’s like to watch your spouse disappear into Lewy land. To know your life partner, your best friend of 34 years is no longer with you in mind and spirit- that has got to be the worst feeling. The emptiness, the loneliness, the loss and sorrow, the feeling of an uncertain future without your beloved- it has to be completely gutting. We all grieve for Dad but more times than not I feel like we don’t even have time to grieve as we’re too busy trying to keep up with the Lewy rollercoaster. I could delve in to our own emotional rollercoaster but I think that’s a topic for a different time.

As for our recent doctor’s visit, the neurologist wasn’t able to help us that much. Dad wasn’t able to make the appointment but Mom still went in hopes of being able to see the doctor to get some much needed help. Unfortunately he was basically only able to offer up a few nursing home suggestions. We have a call in to Dad’s psychiatrist and we’re waiting to hear back on her opinion.

So for now, please keep us in your thoughts or say a prayer. Thanks to all who continue to offer us kind words of love and support.

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