Archive for August, 2008

34 Years

Happy Anniversary, Mom & Dad.

I love you. xo


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Since the first mention of the possibility of Lewy Body Disease for my Dad, I’ve been doing quite a bit of research to educate myself about this little known yet insidious disease. After reading about other’s experiences I’ve learned that many LBDers in the beginning stages have a relatively good quality of life. Some are able to drive, shop, fly, take trips, work around the house, cook and so much more all on their own. Finding this out gave me and my family great hope that Dad would be okay for a while. Supposedly Dad is in the beginning stages so we thought he’d be able to be more like his old self and putter around the house, read the newspaper, and par take in normal every day activities. Unfortunately, this is not the case and really, comes as a bit of a shock to us. If Dad truly is in the early stages, why can’t he do similar activities like others in the same predicament?

For instance, we have to help get Dad dressed and ready every morning which can easily be an hour long project. He can’t cut up his own meals, make coffee, or perform the simplest of every day tasks. Going to get the mail and possibly walk the dog is about all that he can accomplish these days. Why is this? Why isn’t he as good as others are if he is indeed in the beginning of the disease? I read  Dr. Graboys, a Boston cardiologist with LBD, flies on his own; or, others’ loved ones are left at home while the spouse goes off to a work conference, etc. I don’t know how this could ever be possible with Dad. He would NEVER be able to handle any of those situations right now. Don’t get me wrong, I know even those in the early stages have difficulty with every day tasks, but it just seems like it is so much harder for Dad and he isn’t even able to do an inkling of what other are able to do who are in the early stages.

I’m pretty sure being over-medicated has something to do with his inabilities and I suspect those with loved ones in the early stages of Lewy Body who are performing well have extremely LBD savvy doctors working for them. The meds are something we’re trying to get under control for Dad and we have even switched some doctors in attempt to get Dad on the right track. Some times I wonder if it really is all because of the balancing act of the medications or could Dad be more advanced in the disease than we and his neurologist think? I pray that he isn’t more advanced and that eventually the right course of prescriptions drugs will be found to work for Dad. Until then, we can’t help but wonder…

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In my last post I mentioned that it was rough and Dad wasn’t doing well. Well, things only got worse for a while. Dad was basically bed ridden for three days. He would not get out of bed once. We couldn’t figure out what was going on. He was having his “episodes” and we just thought it was the cycle of the disease and he was hitting a really bad patch. Finally after much stress and many struggles we decided to start him on Namenda and also gave him a Lorazepam. Within a half hour, Dad was bouncing back to his old self. It was seriously unreal- just like that, he was back to his old self. By early evening he was reading the newspaper (something he hadn’t done in 6 months) and was talking about the stock market and giving me financial advice. It was so bizarre but also so good to see Dad back in action again. Now if we can only keep it up? 

I don’t know if his recent episode was a case of Dad going through lorazepam withdrawl or if he was just going through the Lewy Body cycle? Dad had not had any lorazepam since his time in the hospital and according to one of his doctors (who once mentioned) withdrawal can be vicious and it usually takes 5-6 months to be weened of of it. Lorazepam is considered a “bad” drug for LBDers so we’ve been trying to limit his consumption of it. Up until he started to go downhill, Dad was doing pretty well without the lorazepam. Who knows, maybe the lorazepam worked or it was the introduction of the Namenda or perhaps both? Whatever it was, it worked and he was amazingly good.

Since Monday, Dad has been extremely tired and fatigued. He’s definitely more alert and seems to have good cognition but he’s just exhausted. I’m thinking it’s the combination of all the meds he’s on that makes him so tired. I’m hoping he can get a little more energy soon. Sister is leaving in a few days to head back to New York and I know we would love to do a few day trips as a family before she leaves.

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The past few days have been pretty rough with Dad. We don’t know what’s going on. When he was released from the hospital and a few days afterwards he was better than ever- just like his old self. Unfortunately, it was too good to be true and Dad has had some really bad days lately. In fact, he had an appointment with his neurologist on Thursday and we were barely able to get him out of the house to make the appointment. It took all four of us to get him out the door and in the car. Eventually on the way to see the doctor, Dad sort of snapped out of his fluctuating cognition; however he was still refusing to eat and take his pills, again. In a way, it was good for the neurologist to see him in a “bad” state. I think he was actually little shocked because every time he sees Dad, Dad is always “good” or putting on an act. This time, Dad still refused to take his pills for the neurologist and the neurologist spent quite a bit of time with us- he was genuinely concerned. The funny thing is that Dad wasn’t even as “bad” as he could be.

While we were at the appointment, the neurologist ordered a leg scan for Dad because it turns out while he was in the hospital NO ONE ordered this simple test to see if there was a clot in his legs. Apparently, this is one of the first things that should have been done. Thankfully, the neuro ordered the test and everything turned out okay. The neurologist said Dad’s “bad” episodes are just part of the terrible cycle of this disease. If he doesn’t get better, we might try putting him back on one of his old meds. In the meantime, the neuro is starting him on Namenda so hopefully that will increase his daily quality of life.

For now, it’s a constant battle to get Dad out of bed, dressed, have him eat and take his pills. He just wants to sleep all day and he’s losing heaps of weight- too much. We’re praying that he’ll snap out of his “bad” spells soon and get back to his old self. Until then, life is quite stressful and exhausting around here. Caregiving is hard, much harder than one can imagine if you haven’t been there before. My Mom bares the brunt of it and I can see it’s taking a toll on her. It’s hard on all of us.

In other news about Dad’s pulmonary embolism, his recent blood test rendered too high of a reading on Wednesday so the GP has halved some of his coumadin and he’ll be re-tested on Tuesday. Keeping his blood “even” is a bit worrisome especially since Dad isn’t eating. It’s important to keep his diet balanced everyday and having Dad refusing to eat isn’t helping.

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Dad has been released from the hospital and seems to be doing relatively well, all things considered. The doctors have said that Dad has a massive pulmonary embolism in his right lung, in the mid to lower region of lung. He’s on blood thinners- Coumadin– and has to receive a shot of lovenox twice a day. We are able to have visiting nurses come to the house and draw blood which will be sent to the doctors for a reading every few days. Right now it’s a balancing act to get the blood to a certain level in order to avoid bleeding out in his brain (aka sudden death). Anyway, we’re thrilled to have Dad home but we will be carefully monitoring his health. He’s been ordered to bed rest and we have to carefully watch and maintain his diet and vitamin K intake. His activity has to be limited to some degree in order to prevent injury and thus bleeding. We’re not even allowed to use a razor to shave Dad because his blood won’t clot very well if he was to be cut.

In the hospital, Dad’s neurologist removed three medications from Dad’s daily regiment and so far it seems to have made a world of difference. It’s almost like he’s back to his old self. He’s engaged and alert; asking questions; wants to go shopping and to the movies; he’s laughing; etc. It’s just so good to see him “good” again. I know this could just be a flash in the pan and it could all go downhill in a blink of an eye but for now we’re enjoying having dear old dad “back” with us. We are all so thrilled- he’s alive and he’s back.

Dad will have to follow up with his primary care doctor this week and he’ll see his neurologist next week. The neurologist also increased Dad’s Sinemet (25/100mg) to four times/day and increased his Aricept to 10mg/day. When Dad goes to the neurologist next week he’ll start on Namenda, or at least that’s the plan.

Another good thing to also come out of this ordeal is that Dad is being set up with a speech pathologist. The visiting nurses association has set up a specialist to come to the house and work with Dad on his speech and swallowing issues. I think Dad has just forgotten how to swallow and doesn’t know how to use his tongue to help eat. He also has speech issues in terms of he’s able to think thoughts but just can’t fully articulate them. He gets hung up on certain words and starts stuttering. Hopefully the speech pathologist can work with Dad and help him take his time and work through his issues.

Thank you to everyone for your prayers and messages. They mean a lot to our family- more than you know.

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We had to take Dad to the ER on Sunday night.

Sunday evening started out okay enough and ended with some lively Wii tennis playing before we all settled in for the night. Around 1am, Mom came frantically running to my room complaining that something was wrong with Dad. He was complaining of chest and shoulder pains so we naturally thought Dad was having a heart attack. So, Dad was taken to the ER where he was examined, had blood work and a CT Scan.

After a LONG waiting time in the ER, the tests all came back okay, except Dad’s Billy Rubin level was elevated (which is linked to your liver). Without discovering what the cause of his pain was, the ER admitted Dad Monday morning with severe abdominal pain. After some more consults and another CT scan, the doctor came and delivered the bad news: Dad has a pulmonary embolism, which is a blood clot, in his right lung. We were stunned and totally not expecting that news. His blood clot is actually pressing on his nerve which is causing him horrific pain in his abdomen and shoulder. In a way, the pain is a blessing in disguise because without it, we NEVER would have known Dad had a pulmonary embolism until it was too late.

Dad is actually handling the news relatively well, all things considered. We’ve been reassuring him and the Doctor said we caught it early enough and it was good we brought Dad in when we did. I wasn’t aware but blood clots are the leading cause of sudden death in the US.

So now, Dad is starting blood thinning medication and some other stuff. Mom is going to have to become “Nurse Mom” and administer injections at home and he’ll need his blood checked every other day. Dad was actually worried that Mom might not know how to do the injections. We said that Mom always takes care of us and Dad said, “yes, that’s the beauty of Mom, she always cares for us, no matter what.” I thought that was really sweet.

Dad hasn’t received any of his regular meds yet and we’re very worried about how he is going to react without them. He was also given morphine several times which is considered a “bad” medicine for LBDers so I’m hoping and praying that tonight and tomorrow will be not a living hell. Mom is spending the night in the hospital room with Dad as the staff asked if she could stay. Sister and I volunteered but Mom being Mom is taking it upon herself. Sister and I will be up there first thing in the morning to relieve her.

Dad’s neurologist is suppose to consult and see Dad while he’s in the hospital. So far we haven’t seen him yet, but hopefully he’ll be able to help Dad with the swallowing issues and order a speech pathologist. We also want to discuss adding Namenda.

Anyway, I’m heading to bed as I’m completely exhausted and surviving on just a few hours sleep in the last 24 hours. I hope this entry makes sense. I wanted to get this down as I’m not sure when I’ll be able to blog again soon.

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Dad has been having trouble with his eating and swallowing lately. He’s eating less because he’s complaining he can’t swallow and his tongue is moving all around. He can still eat and drink but it’s just difficult and therefore he’s consuming less. Mind you, Dad is 74, and in the beginning stages of LBD. He’s fairly active, working out 3 x a week and has even built up some muscles.  For now, we give Dad Ensure, fruit smoothies, soft food (mashed potatoes, veggie soup, etc). Sometimes he even has a few pieces of chicken/meat and he loves shrimp.

Well, his new GP ordered a swallow test to be done and unfortunately, Dad couldn’t do it. The radiology doctor was amazed to see he had no gag reflexes and was shocked that he couldn’t even consume any of the test liquid at all. The doctor thought that possibly the swallowing problem was a result from his brain tumor rather than the LBD.

So, now his GP wants him to see a gastroentrologist to have a permanent feeding tube placed inside of him. My entire family thinks this is absolutely ridiculous and will not agree to do so. We have agreed to a consult with said doctor but Dad is no way impaired enough to consider such a drastic measure especially since Dad can still eat and drink, he’s just having difficulty. Perhaps it’s because he’s over-medicated and is experiencing effects from that (we’re slowly weening him off of some of his meds); or the Parkinsonism and him losing his muscle control with his tongue; or has he just forgotten how to swallow or could it be as simple as a dental issue? Perhaps there is the possibility there is something else going on with his brain? Any of these are possibilities but they’re not even being considered by his doctors. My family thinks the feeding tube is a ridiculous idea and we will not go along with it.

Not to mention that I’ve done some preliminary research and found the following information: Feeding tubes in dementia patients are NOT recommended; Having a feeding tube in place usually takes places during the last stages of life and Dad is clearly not there yet; Often patients only survive 6 months after the implantation of the tube; A tube needs to be replaced every 6 months; It takes one hour to feed a bottle of Ensure through the tube; And, feeding tubes don’t cure malnutrition.

So, next Tuesday, we will meet with the Gastro doctor for a consult but we are not having a feeding tube put in to Dad. No way. After all, Dad is still eating and drinking, it’s just less than he normally does due to some new difficulty. A feeding tube is NOT the answer. I don’t even know how it could be a consideration when Dad can still eat and drink.  

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