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Archive for June, 2009

Tonight, out of the blue, Dad asked if he could go on the computer and look up his old Navy ships. Surprised but pleased in his interest, we broke out the laptop and started our Google search. Within minutes, we found just what he wanted to see.

Dad was so excited to see pictures of his old Navy ships and his name listed on the service rosters. He was keen to look up some old ship mates and we found some old Navy pic that might even have Dad pictured in them. The entire time, Dad was smiling and laughing, it was wonderful. I love hearing Dad talk about his past because I know it’s something that will eventually escape him and I’ll never know all the details. I’m more than happy to listen and to learn from his Navy stories. It’s a glimpse in to what my Dad’s life used to be and that is priceless to me.

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Wishing my Dad a most wonderful day. I love you.

May 2009- Dad 75th, Mel 30th & Mother's Day 167

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Mom is home and Dad is happy 🙂

All is well here and we’re looking forward to celebrating Father’s Day this weekend.

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Oops!

The other day Dad and I went out to lunch. Upon returning to my car to leave, Dad wandered off in the parking lot as he was looking at something in the sky. I went ahead to my car and kept calling Dad to come on over and get in the car. As I’m about to get in, I see Dad opening the door to someone else’s car- that is the same color as mine- and getting into the passenger’s seat! I quickly ran over to him and told him it’s the wrong car. Surprisingly, the car was not locked and there was no alarm. Major incident avoided and we got in my car and on our way we went. I told Dad the next time he needs to really pay attention or better yet, just stick with me. We laughed about it afterward but these days, you never know what could have happened if someone thought Dad was breaking in to the car or something.

We also made it out to dinner the other night and Dad had his first taste of cheesecake, ever… or so I thought. Dad said he never had it before so I of course said he must try it. Turns out after talking to Mom, Dad loves cheesecake and he’s most definitely had it before! I guess he forgot. Anyway, I thought at the time his cheesecake taste testing warranted a photo opportunity so here’s a few pics of Dad’s “first” piece of cheesecake. He ate every single morsel on his own.

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Overall, I would say Dad has been having more “oops” moments this past week. He seems a little more forgetful and confused lately. His focus has been off and it’s taking a lot of effort to get Dad to do something when asked. He’s also been mixing up my name, forgetting my name and losing the ability to concentrate on tasks at hand which result in some things taking an hour to complete when it should just take a few minutes. Dad keeps doing things like putting the trash in to the recycle bin and the recycles in to the trash bin. When we try to correct his mistake, it’s an all out war as he’s adamant things are correct. I end up letting it go and switch around the trash when he’s not looking. However, I’ve found he re-checks the trash and switches it back to the wrong way… we’re constantly going around in circles. Things like that keep happening. Maybe his system is still sorting out his meds and needs to stabilize a bit more or maybe it has to do with Mom being away. Still, Dad is doing pretty well which is great.

In other news, we’re off to pick up Mom from the airport tonight. Dad is looking forward to it.

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Things are still going well sans Mum. We’ve been busy running errands, going to happy hour at a fantastic outdoor restaurant and Dad and I even went shoe shopping- at his request. Got to love a Dad that wants to go shoe shopping with his daughter, ha! The Hubs, Dad & I also went to the movies to see Star Trek. It wasn’t my first pick but the men outnumbered me. The movie was bearable for me whereas Dad and the Hubs really liked it.

I asked Dad if he wanted to go to a local baseball game but he wasn’t as keen on the idea. It might have something to do with the Red Sox being on TV or he just doesn’t care- either way, it was fine by me.

This week has been going by fast without Mom, which I guess is a good thing. Although, I feel like Mom could have stayed away longer. She was so worried about being away and the problems that might ensue but really, Dad has surprisingly done well without her. I think this experience bodes well for the next time. That said, I’m sure Dad will definitely want to travel with Mom on the next getaway. He was talking just the other day about wanting to fly to a family wedding in August to see his Sisters and extended family. If he stays “good” we might be able to give flying a go.

I’d have to say, the only things that have been difficult with Dad is getting him to bed at night, dealing with his OCD and stubborn tendencies and some of Dad’s night time delusions. First, Dad refuses to go to bed before 11:30pm- he has to watch the late night news. Around 2am after he gets dressed and futs around doing this and that, he’s finally ready for bed. However, I can’t go to sleep until he’s ready because we have to say prayers together. I do enjoy sharing this moment with Dad, however, I just wish it could happen a lot earlier in the evening! Then there are Dad’s OCD tendacies and his major stubborness that just drive me batty and have me testing my patience. For the most part, I’ve kept my cool this week. Finally, for some reason Dad has these weird delusions about the Hubs which flare up at bedtime nearly every night. They eventually lead to Dad chasing down the Hubs, ready to fight him or yell at him. A sampling of his nightly delusions include the Hubs stealing Dad’s Dog, the light blowing out and it’s the Hubs fault, the neighbors yelling at Dad because Paul has the TV too loud (the TV is set low and we have no neighbors), the Hubs blasting Dad’s ears out with an imaginary generator and so forth. Nearly every other night, I’m chasing after Dad as he’s ready to go after the Hubs for something or other. There’s just no rationalizing with Dad and we have to give him time to cool off. Like I said, it only lasts for a few minutes and things settle down, so luckily things are relatively manageable. Really, bedtime is the only “painful” time for us in terms of Lewy acting up so we can handle it for now.

Just a few more days and Mom comes home!

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Recently, Dad had a few doctor’s appointments that resulted in various physicians deciding to mess around with his current drug regiment. There was no major reason for the tinkering as Dad has been doing really well for the most part. However, it was decided to ween him off one “bad” drug but in order to do that, another one had to be added (Remeron)… why, I don’t really know but I think it partially has to do with the Remeron helping him to sleep at night. So that all started and then he had an appointment with his Neuro. The Neuro wasn’t too pleased to learn of the addition of Remeron. Like us, he didn’t understand why one needed to be added in order to ween Dad off of the other drug. So, we stopped the Remeron and Dad’s restless nights came back in to effect. At the same time, Dad’s blood pressure was frighteningly low and so it was finally decided that his (unnecessary) blood pressure medicine was no longer needed. The slow process of weening him off of the drug began. Also, Namenda has been cut out of Dad’s daily regiment for now, but that will also be added back eventually. For some reason, Dad seems to do poorly when he takes Namenda even though the drug is suppose to have little side effects. Whenever we add it in to Dad’s regiment it’s like he gets more confused and is in a constant haze. Anyway, as you can tell, there is a lot going on with Dad’s meds and it’s a recipe for disaster! All the adding and subtracting of drugs in basically one go wrecked havoc on Dad’s system and so things were a little difficult for a bit. His delusions and hallucinations came back and this time my Husband was and still is, to some degree, the brunt of them. The Hubs takes it all with a grain of salt but it’s quite frustrating and a bit sad when the Hubs has been so wonderful to Dad. Anyway, things are slowly getting back to “normal” and Dad seems to be doing much better, now that some time passed. It was a bit rough for a bit but hopefully it’s behind us and only improvement is in the cards for us.

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I received the following information in an email from the LBDA about the upcoming Alzheimer Research Forum‘s webinar, Betwixt and Intermixed-Dementia With Lewy Bodies:

The Alzheimer Research Forum, is the web’s most dynamic scientific community dedicated to understanding Alzheimer’s disease and related disorders like Lewy body dementias.

Their upcoming event, Betwixt and Intermixed-Dementia With Lewy Bodies has generated a tremendous response from the caregiver community, including some 90 questions on LBD diagnosis and treatment submitted from caregivers.

With this event, the Alzheimer’s Research Forum aims to increase awareness of dementia with Lewy bodies (DLB) among scientists and physicians, their primary audience. As such, the panel of LBD experts will focus largely on scientific research topics.

While the live event may address some clinical issues at a high level, at only one hour long it will be impossible to address the many caregiver questions that have been submitted. To ensure your questions receive the attention they deserve, the AlzForum editors have assembled them in a caregiver comment page and will be asking the panelists and the Lewy Body Dementia Association to respond offline to these questions after the event.

Some of this information can be found on the LBDA website now. Visit http://www.lbda.org/category/4115/publications.htm to read our many publications or watch caregiver educational videos on LBD at http://www.lbda.org/category/4116/multimedia-resources.htm.

For those who are registered for this event, only questions on the scientific topics should be submitted DURING the actual event. If you are a patient or caregiver and have questions in addition to those already posted, you are invited to submit them ahead of time via the AlzForum website at http://www.alzforum.org/contact.asp.

LBDA will work with the AlzForum editors to provide the fastest response to the most frequently asked questions so that LBD families now and in the future can all benefit from the answers. Due to the volume of questions, the reality of limited resources, and the availability of our LBD experts, there will be a modest delay before the answers are posted online.

We appreciate your patience while AlzForum and LBDA work together to develop the answers you need.

Sincerely,
The LBDA Team

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