Archive for June, 2008

This past weekend, Husband and I left home for four days to visit his parents. Leaving home meant leaving behind Mom to care for Dad by herself. Normally this isn’t a problem as Mom can handle Dad on her own… she has for quite a while. However, it seems whenever us kids fly the coup, whether for a short getaway or for the long haul, Dad doesn’t react very well. He loves having his kids around so when we leave, his behaviors start to change and he seems to decline. This was evident once again when Husband and I left.

We prepared Dad ahead of time and told him it would just be for a few days and we would call every day, several times a day, but once we were gone, Mom said Dad wasn’t doing too well- especially on the first day. The first time I called home, I could tell Mom was upset on the phone and fighting back the tears. Dad had been sobbing for hours and Mom was trying to pick up the pieces. I know it broke her heart to see him like that and I can’t help but feel bad for having triggered it. I know it’s not my fault, it’s just the way it is, but I do feel bad. It’s hard on Mom.  

Luckily, Mom and Dad were able to get pass the first few days and Dad started to get a little better. They managed to get out to the movies, go to church and even do a little housework. Dad was doing a little better but definitely no where near as good as he had been doing.

I hate when he starts to go downhill. He has been doing so well lately and then something like this sets him back… such is the life of this terrible disease. Hopefully now that we’re home, Dad will start improving. Today he hasn’t been doing too well but here’s to a new day…


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Things are looking up… Dad has been doing much better these past few weeks. In my opinion, mostly thanks to the fact that we’re slowly taking him off of one of the many bad medicines he’s been prescribed. After joining the LBD Caregivers Yahoo Group, I learned that Dad is extremely over-medicated and has been prescribed too many medications that are considered bad or contraindicated for LBD patients by experts in the field. As some may or may not know a symptom of Lewy Body Dementia is extreme sensitivity to medications. With LBD patients it is best to take the approach of “less is best” and “start low and go slow.” Lewy patients with less medication tend to do better in the long run than those who have been more medicated.

Before I knew any of this, Dad was often completely out of sorts. He was detached, confused and living in sort of a fog. He was having a lot of issues with rigidity, movement, speech, and experiencing side effects from the different meds. Now, we’re starting the process of taking him off of some of the medications and we’re seeing a real improvement in his health. He’s more alert, interacts with us more, initiates conversations, ask questions and overall, is more active.

On Thursday, Dad has a doctor’s appointment with one of his doctors. I’m preparing a packet of information for the doctor to read and a list of the bad mediciations I want discussed and hopefully have Dad taken off.  We just need to focus on getting him on the right course of treatment and constantly re-evaluate his medications.

Here’s to things *hopefully* looking better. 

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Dad had a great day which was such a wonderful thing to see after a rough week. In some ways, we saw glimpses of his old self which just made my heart melt; his little jokes, and when he smiled and started laughing… it made me feel so happy to see old Dad again.

Dad had such a great day in fact, that we were able to take him to church and then out for Father’s Day brunch at his favorite place- IHOP. (Who doesn’t love pancakes!) We were able to complete a Red Sox puzzle and of course he got to open some presents (CDs, an iPod Shuffle, and nerf Wii attachments) and played a few games of tennis on his Wii.

With Lewy Body Dementia, lucid, good moments are usually fleeting so I don’t know how long it will last. I do know I will cherish these little moments because, after all, sometimes it’s the little things in life that matter the most. We all love you, Dad. xo

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As a family we are starting to learn more and more about Lewy Body Dementia. When the possibility of LBD was first mentioned by Dad’s neurologist, we were all completely stunned… mostly because we had never heard of it. Even his GP didn’t have a clue so why would we? After doing some brief research we later learned the cruel fate that laid ahead. As a way to try to empower ourselves, I have been doing heaps of research in an attempt to understand this devastating disease. I was having a hard time finding information relating specifically to Lewy Body Dementia but, luckily, I came across the LBD Caregivers Yahoo Group. They have been an invaluable resource and I highly encourage anyone dealing with LBD to join. These members have either been through it or are going through it and they are all a wealth of first hand information.
Even though Dad has LBD, I feel like in a way, our entire family has it. We all are dealing with the effects and trying to grasp the long road that lies ahead. There are going to be so many challenges and struggles but for now I am trying to concentrate on educating myself and my family in order to understand what’s best for Dad. A part of me is very sad knowing that Dad is not the same Dad he once was. And, since I was living in Australia for the last three years, a part of me can’t help but feel guilty that I missed out on the last of his “good years” (aka before LBD) and that I wasn’t here to always help Mom deal with the difficult changes and struggles. But now I am home for good and I’m happy to be back with my family. I know it’s a huge relief for Mom, and Dad is happy to have Husband and I back with him.

This will be the first of many post about my family’s journey with Lewy Body Dementia.  Please keep us in your thoughts and prayers. My heart felt best goes out to all those dealing with LBD. May you find peace, comfort and strength in your journey.  

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