Archive for September, 2009

In a lot of ways, Dad has been doing better. He’s was willing to swim, do some puzzles, he showers and dresses himself, gets his own breakfast and so forth. Unfortunately, improvement in those areas means something else has got to give. In this case it results in sleepless nights, hallucinations, constant worry and anxiety for Dad. He is unable to relax or sit still for more than 5 minutes mostly due to hallucinations. He’s constantly worried someone is trying to break in to the house or someone is outside. All throughout the night, he’s jumping out of bed with a stick (or whatever he can find) swinging left and right to ward off whatever it is he thinks he see and hears. He’s always opening and closing the front door to protect the fortress- day and night. Poor Mom hasn’t had any sleep and it’s making her sick. No matter how we try to reassure Dad that everything is okay and nothing bad is going to happen, he just can’t accept it. He’s so focused on protecting the house. Poor Puppy can’t even go out in to the backyard to do her business without him chasing her back inside… she’s miserable just as much as Mom. He’s literally awake all hours of the night and if Mom is lucky, Dad will maybe sleep at 5am just to be up an hour later. They’re running on empty. After several days of no sleeping, Dad will eventually crash and sleep the night through but then it’s back to another several days of the same sleepless nights and hallucinations.

Mom took Dad to the Neurologist the other week and overall the Neurologist was really pleased with Dad and said he was much better than last time. His opinion was that the insomnia and hallucinations could be part of the roller coaster cycle or it could be because the VA changed some of his meds. The Neuro decided to change some of his medication back to the original prescription (slowly) and gave Mom some free samples to help with the out-of-pocket expense which was really nice. I feel much better having Dad back on the Neuro’s meds rather than some “equivalent” the VA gave out because it’s cheaper for them. I told Mom she needs to contact the VA and tell them what they gave is causing some ill effects and this would be cause to go back to the original prescribed brands- costs picked up by the VA. One step at a time I guess. For now, I just hope Mom can get some sleep and Dad can settle down. As frustrating as it is for Mom to deal with no sleep and constant hallucinations, we can only imagine what it must be like for Dad and the constant terror that consumes him daily, driving him to protect his family. It breaks our hearts.


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Today is World Alzheimer’s Day- a day when the Alzheimer’s Association and other organizations around the globe unite efforts to raise awareness about the disease and its impact on families, communities and nations.

Here are some facts to consider:

  • According to the 2009 World Alzheimer’s Report, newly released today from Alzheimer’s Disease International (ADI), there are 35 million people with Alzheimer’s or another dementia.
  • There are 5.3 million Americans with Alzheimer’s.
  • There are 10 million Alzheimer caregivers.
  • Every 70 seconds, someone in the US develops Alzheimer’s.
  • There are 78 million US baby boomers who will be impacted by Alzheimer’s disease.
  • The annual societal cost to our nation is $148 billion.
  • Worldwide, the economic cost of dementia has been estimated as $315 billion annually.
  • The US government only invests a meager $428 million dollars in Alzheimer research as compared to $6 billion for cancer, $4 billion for heart disease and $3 billion HIV/AIDS that has resulted in great advances.

Here are some ways you can help:

  • Consider making a donation to the Alzheimer’s Association today. You can donate by clicking here. Your gift will help the Alzheimer’s Association fulfill its mission against Alzheimer’s disease through the advancement of research, the promotion of brain health and providing care and support services to the estimated 5 million people in America living with Alzheimer’s disease.
  • You can also write Congress now and urge them to support the Alzheimer’s Breakthrough Act of 2009. It takes just a minute to help. Click here to take action.
  • September and October is also prime time for the Alzheimer’s Association Memory Walk. The Memory Walk is the nation’s largest event to raise awareness and funds for Alzheimer care, support and research – and it calls on people of all ages to take action in the fight. Year-round, participants are involved in efforts to help defeat this devastating disease. To find a walk near you, click here and find out more information, sign up, donate or volunteer. Get out there and walk!
  • To read more about the report released today, click here.

*Content for this entry taken from the Alzheimer’s Association website.

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When the Hubs and I found out we were pregnant, Mom was out-of-state visiting Sister in NYC while Hubs and I stayed home with Dad. Keeping it a secret was pretty easy and we loved having it be “our” secret. Eventually we decided it was time to tell our folks. As timing would have it, Mom would be home the week of Father’s Day so we decided Sunday, June 21st would be the day to share our wonderful news. We had plans to go out for a Father’s Day dinner celebration and figured we would tell them then but our excitement got the better of us. We opted to have Dad open his presents earlier in the day at home rather than later at the dinner.

To tell them the good news, I had purchased a cheesy t-shirt and hat that said “World’s Greatest Grandpa” across it. I wrapped it in a large box with a pretty bow along with some other gifts to open before the big one. Dad opened his movie tickets and then a gift certificate to one of his favorite restaurants. Time came to open the last large box. As Dad opened it, he was thoroughly confused and appeared not to be catching on. The Hubs and I looked at each and kept waiting. Then, Mom piped in and was like, “Is that a joke because that could really be mean.” Our reply was of course it’s not. Then Mom said,  “well, the only way it wouldn’t be is if it means what it really means but it doesn’t.” To which we replied, “well it means what it means! We’re pregnant!” Mom & Dad were seriously confused and after a minute of letting the news sink in, they were beyond ecstatic.

Mom and Dad wanted to tell Sister right away so Mum took a picture of Dad holding up his Grandpa shirt on her cell and sent it to Sister. Sister calls and says, “What is that… did someone send that to Dad as a joke for Father’s Day?” Um, no! At this point Sister is on speaker phone so we all yell the good news to her which rendered her speechless for the first time in her life. Seriously, dead silence for 30 seconds and after we confirmed she was still on the line, she was like, “What? There’s a baby in your belly? You’re having a baby?!” Yes! Yes! Yes! To which congratulatory cheers were yelled and Sister got back to her crazy, chatty self.

After sharing the news with my family, we were on the phone to the Hub’s parents to continue our Father’s Day baby announcement. We were of course showered with more congratulatory wishes.

Dad has already decided we’re having a boy and corrects anyone who dares to call the baby a girl. It’s kind of funny and cute that he’s so keen on a boy. Maybe after having to deal with my Mom, Sister and I for so long, he’s ready to have a little buddy to pal around with for a while.

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My husband and I have some exciting news to share… We’re expecting our first child on February 23, 2010!  We’re thrilled we’re going to be parents and I’m already finding it difficult to wait out the rest of the 9 months to meet our little one. At times I feel like the pregnancy is going by so fast and other times not fast enough.

Some may have noticed my blogging tapered off over the summer and that’s because between the packing, preparing for the move to Boston and dealing with horrible morning sickness, I just didn’t have the energy or feel well enough to blog. So, here I am at 17 weeks and still suffering from bad morning sickness but I’m hoping it will disappear fast. I’m told I’ll start feeling good soon… let’s hope! In the meantime, I’ve decided it’s time to get back to blogging- there’s a lot to get caught up on.

I’ll keep this entry short for now, but Mom and Dad and all of our families are thrilled for us. I’ll share how we broke the news to them in the next entry. Dad has already stated he’s a bit partial to a boy but of course he will be happy with whatever happens. Every day, Dad asks how the baby and I are doing and if we have found out the gender yet. It’s quite cute. I’m grateful he’s able to still remember our happy news and is able to take an interest in the baby despite the distance that now separates us.

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I mentioned before that Sister was able to get Dad into the pool on a few occasions despite my unsuccessful attempts throughout the summer. So, Sister sent me some video of Dad working his Breaststroke, Freestyle and Sidestroke. The video is a bit pixellated because it was taken on a camera phone. Here’s Dad in action:

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The Lewy Body Dementia Association has made available on their website a Caregiver FAQ in response to caregiver demand from a recent LBD webinar hosted by the Alzheimer Research Forum. To listen to the webinar, click here.

To read the first installment of answers to some of the most frequently asked caregiver questions, click here.

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