Archive for October, 2008

Husband and I recently celebrated our second wedding anniversary. I have to say, married life is wonderful and there truly is no other person I’d want to spend my life with. He’s been my rock, my best friend, really, my everything. He’s been remarkable with dealing with my family situation, so much more than I could have ever imagined. Husband truly is a wonderfully compassionate, loving and gentle soul with a most generous heart. He’s often my reality check, my voice of reason and my source of patience just when I think all is lost.

After two years, we’ve recently completed our wedding album. Looking back through the photos brings back so many happy, heartfelt memories. It was a beautiful day that went by all too fast. When looking at the photos of Dad and I from the wedding, I can’t help but think about how much has changed and all that he has gone through. Thinking about my wedding day, I am so thankful that Dad was able to walk me down the aisle and that we got to share many special moments together. At times like that, there is truly something to be said for being Daddy’s little girl. It is a special bond that as a child you don’t necessarily understand or appreciate but as you get older, you get it and you love it. He was so proud of me and so happy for me. I cherished every moment.

Now, when I look at the wedding photos, I see the Dad I once knew and I’d give anything to have him back. So much has changed from two years ago to today. I wish Dad was his old self; that he wasn’t ill. And it’s not that I took him for granted before, but I guess I was just never prepared for Lewy. I certainly never thought I’d be in my late twenties caring for a parent with a progressive degenerative disease. I just wish I could have “old Dad” back again but I know it’s not going to happen. It is comforting to know I have so many fond, loving memories of my Dad, and some of the endearing ones, being from my wedding. I only hope he’ll be able to have the same with Sister when it comes to her wedding some day, but, sometimes I think she’ll be cheated out of her big day with Dad. I really hope not, but as anyone who knows LBD, you just never know.

As I like to think about the happy times with Dad, I’ll share some pictures of my favorite moments of Dad from my wedding day.

Professional photos by Michael Graham.


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Husband and I are getting ready to leave for a trip to New Orleans with Hubby’s family and then a trip to Las Vegas right after that to meet up with some of our Aussie friends that are traveling the US. We’re looking forward to a holiday, a hectic one at best, but I wish it was just Hubby and I going away by ourselves only. At least we’re able to getaway and for that, I’m thankful.

I really wish Mom could take a trip and escape for a while. She’s basically trapped here in the house most of the time. Yes, she gets out to have lunch from time to time or heads to the grocery store but that doesn’t really give Mom the respite she desperately needs. I’m sure she’d give anything to go away and unwind for a bit but, right now, it doesn’t seem possible. Dad apears to be in a phase where he is completely demanding and dependent on Mom lately. Even though Husband and I are here to help, he still expects Mom to be there for EVERY waking moment. It’s non-stop and frustrating. While I’m helping Dad out, he’ll still be screaming for Mom to come help him. It’s like seeing Mom is the only thing that appeases and calms him.

I explained to Dad that Husband and I are going away and his response was, “Why are you doing this to me?” He hates it when we leave. I can only imagine what it would be like if Mom ever went away. Often times when we leave, Dad goes in to his “bad” episodes. I’m wondering if this new phase is building up to his bad episode to come while Hubby and I are away.

So, despite Dad’s resistance, we’re off to the Big Easy and hopefully Mom will be okay with Dad. She knows she can only do what she can do and no more. I’m sure it will be tiring, frustrating and stressful for Mom while we’re away and the days we’re gone can’t go by fast enough.

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Today Mom and I took Dad to the neurologist for a regularly scheduled check up. Overall things went pretty well. The doc did all the usual tests however, there were a few changes in Dad’s abilities.

The first being, his field of vision has been limited. The doctor had him look upward without moving his head- just his eyes. He was unable to look fully upward without also moving his head. Dad also had a hard time using just his eyes to look left or right. He needs to move his head along with his eyes in order to look side to side. Naturally right after the doc said Dad had a limited field of vision, we didn’t think to ask what that meant or why? We always do things like that. Anyone know what that might mean? The Doctor didn’t seem too concerned but took note.

The second change was that Dad was unable to do the hand flap test (or whatever you call it). It’s when you hold one hand out and use your other hand to flip flop each side of your hand on top of the hand that’s held outward and then switch sides and do the same thing to the other hand. (Does that make sense?) Anyway, he wasn’t able to coordinate his movements to do it successfully and had a difficult time.

Other than those issues, things seem to be okay. The Doctor was happy to hear Dad’s eating better, moving around more and taking his pills. We’ll see the Neurologist again in three months time, unless something else comes up before that time. Let’s hope not!

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Since Dad’s diagnosis, I’ve used the LBDcaregivers Yahoo Group for support, guidance and information. Please consider joining if you are a caregiver or have a loved one with LBD. There is a lot of valuable information on there and very kind, helpful people. Many share their experiences, their tips, their laughs and their tears. This online support group allows you to talk with others who are going through the same issues. It gives you great perspective on how to deal with the disease, the road ahead, and, the rollercoaster that is LBD.

Please check them out:

LBDcaregivers Yahoo Group · A group to provide support and information for Lewy Body Dementia caregivers. To join, just click the link below.


I’ve also updated the blog a little bit. I’ve sectioned out Lewy Blogs and Support Groups so they’re easier to find. The blogroll has various articles and information relating to Lewy Body Dementia and all that it entails. If anyone knows of any other groups or blogs to be added, please let me know and I’ll gladly add them to the side bar.

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For Dad’s birthday, we bought him a Wii and it’s one of the best things we’ve ever gotten him. Surprisingly, he does really well with the Wii despite his LBD and Parkinsonism symptoms. He mostly enjoys playing the golf, tennis and boxing games.

Dad does well with the golf which surprised all of us. You have to line up your shot using the buttons on the remote and adjust your force for hitting the ball so you have to be steady. I thought Dad wouldn’t be able to do any of this, but with a little help from us, he manages pretty well. In fact, he got a hole in one… he’s that good!

Dad does have some trouble with the bowling game as he can’t get the timing and coordiantion down. To bowl, you have to hold up the remote while pressing a button. While going through the motions as if you were bowling, you must release the button while moving your arm forward. Dad can’t quite get the timing and gets frustrated so we don’t play it that much with him.

Overall, the Wii acts as good exercise for Dad. Although at times it can be frustrating, it does help him work on his coordination, concentration, steadiness and accuracy. When he does well, it makes him happy and boosts his energy level. When all else fails, he enjoys watching Hubby and I play.

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A little while back we found out the bands, America and Creedence Clearwater Revisited (basically all the CCR members except John Fogerty), were going to appear in concert, locally. These bands are two of Dad’s favorites. He just loves them. Unfortunately, Dad was doing rather poorly in the health department and therefore buying tickets for the concert seemed a bit like a waste since Dad probably wouldn’t be able to attend. As with LBD, you never know how Dad is going to be one day from the next. It’s hard to plan things and get our hopes up when more times than not, it doesn’t work out due to the LBD rollercoaster.

In the recent weeks Dad has been improving and so Sister decided to take the chance and bought tickets a few days before the concert. I’m so glad she did. Dad was elated to be seeing them and overall, it really pepped him up. On Saturday, Dad was doing really well and so Mom and Dad went on their “date night” to the concert. It ended up being a late night as the concert didn’t get over until midnight. According to Mom, Dad did really well the entire night and was singing along and dancing to every single song. He loved it. When they arrived home, he was all revved up and almost like new.

Of course, Sunday came along and Dad was dead tired. He does well when he’s stimulated but usually the next day Dad crashes and he did. Not as bad as he has in the past but Dad was a bit out of it and very tired all day. Despite this, I’m thrilled Dad went to the concert. I think it’s good for his psyche and well-being to do things he enjoys and to know he can still do it. It’s also good for Mom. I know she’s been feeling “trapped” lately so I’m glad she was able to have a fun night out with Dad.

There’s definitely something to be said for music therapy. I really do believe it works magic. It’s one of the reasons we bought Dad an iPod. He listens to his CCR, America and all his old favorites on there. He loves it and it seems to make a difference in his well-being.

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Things seem to be getting better for Dad. I think the Namenda is finally kicking in coupled with a reduction in his daily Sinemet. He’s not experiencing hallucinations anymore which is great and he seems to be more cognizant and a bit like his old self. He’s now able to remember and fully recite his prayers at night which I believe is quite comforting to him. Today he went to Costco with us and the past few nights he’s been able to walk the dog. It’s great to see him up and functioning, again.

The only downside to his improvement is that he still sleeps the majority of the day. Often times he can easily sleep 15 hours or more, however, he’s very alert and active when he finally rises for the day. If we try to wake him early, he just does not have a good day and it ends in him begging to go back to bed. Generally, if he gets his desired amount of sleep, we don’t have to fight to get him out of bed and dressed. He’ll even have a good appetite. I mean, he’s not completely like his old self and in many ways, it’s still like caring for a kid. He’s dependent on us for his daily care but he’s definitely engaged in every day activities, able to focus, think and speak clearly. Who knows, this could all be part of the Lewy rollercoaster and next week we could be back to square one. Maybe, just maybe, we are getting his medication regiment under control? I don’t want to jinx it but it’s really quite lovely to see Dad getting back to being Dad, again.

However, with the upswing in his health and behavior comes a bit of a catch 22 situation. Now that he is more alert, he is more aware of his declining health. When he was “bad” it was never an issue. I think Dad is slowly realizing that something is wrong but he’s still in denial about having Lewy Body Disease. He thinks it’s “B-S.” We talk about his Parkinsonism- the trembling limbs, shuffling gait, stooped posture. For Dad, he sort of realizes that he must have something like it as there is no denying his shaking hands. Since he is understandably sensitive about his condition, we don’t really say the words, ‘Lewy Bod Dementia.’ It’s not that we’re trying to hide anything; it’s just that words like ‘Alzheimers’ and ‘Dementia’ are powerful and devastating words. To someone in a weakened mental and physical state, hearing them over and over can really do in one’s psyche. I always refer to Lewy Body Dementia as Lewy Body Disease or rather, LBD. Often times I don’t even really mention any of it in front of him. We’ve tried talking about it with him on several occasion and the doctors have mentioned it to him as well but he just doesn’t get it… or refuses to get it. As he says, “I’m not sick… that’s B-S.” To some degree it’s better this way because I think when he finally does come to grips with his reality, it will be absolutely devastating and I wonder about the affect it will have on his will to live.

Since Dad is quicker on the up take these days, I think he’s starting to remember the names of his medications. For instance, he’s taking Aricept which treats Alzheimer’s symptoms. During dinner, Dad overheard the Aricept commercial running on the TV in the background. The commerical talks about alzheimers over and over again. Well, Dad heard that word, stopped eating, turned around and watched the commercial. Mom and I both looked at each other and my heart sank. I know he knows and I think he’s dealing with it in his own way. He never discusses it with us or with his doctors. Since Dad seems to be getting better maybe that will change and we’ll figure out how to deal with it together.

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