Archive for January, 2009

We received some good news today in the mail. Dad has been accepted in to the VA health care system. Woo hoo! We applied well over one month ago, but had yet to hear anything about his application until today. We were originally worried Dad would be denied benefits because of the lack of VA resources and other unknown reasons. However, the gods must be smiling down upon us and now we’re in the system!

We are trying to read up on what Dad has actually been approved to receive. It seems a bit confusing but maybe we’ll set up a meeting with our local VA office and go from there. I’m just so happy that Dad has been accepted. However, it did say that every year you basically have to reapply so just because he’s been accepted this year doesn’t mean he’ll get it next year or the next. Let’s hope he stays in the system as I believe the VA benefits may be very beneficial to our family.

After serving eight years in the US Navy it’s nice to know he’s able to use some of the benefits promised to him. Every single one of our brave and dedicated service men and women should received the benefits they’re entitled to from their service. One shouldn’t have to worry about being accepted or denied. Anyway, I’m glad something finally went our way. Some times it just feels like a constant battle against the world. It’s nice to know this is one battle we don’t have to fight for.


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For the first in probably six month, Dad went to the gym today. My husband and I have been going every morning mostly while Dad is still asleep. Today, for some weird reason, he awoke quite early and came out on his own. After getting cleaned up, he saw we were getting ready for the gym and stated he wanted to go, too. We were a bit shocked but figured why not? So, Dad came along and during the drive to the gym, we warned him that he has to start out slow and easy. He generally has a tendency for pushing himself so it was important for him to understand the need to go easy. After all, Dad hasn’t been to the gym in many months and he does have a very thick blood clot.

I started Dad out with 10 minutes on the bike and then he went along to do his weights. He supposedly started out with the least amount of weight as possible on each machine. We finished working out and Dad said he felt pretty good and was happy to be back in the gym. We’ll see if he wants to go again- in moderation.

After the gym, Mom, Dad and I went out for lunch and then did some shopping. Dad ate everything once again and he wanted to do some shopping on his own while we ran errands to various stores. He even picked out a pair of jeans for himself- more good signs of improvement.

It’s amazing to think that just over one month ago things were so bad that we would have to place Dad in a facility. Now he’s going to the gym, out to dinner, the movies, shopping, etc. It’s unreal but I’ll gladly take the improvement.

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I received the following in an email from the LBDA. Please take a moment to help them out.

The Lewy Body Dementia Association’s newest publication, An Introduction to Lewy Body Dementia, is already in high demand by LBD families, physicians and aging resources.

If you’ve already read this booklet, the LBDA would appreciate your participation in a short online survey at http://www.lbda.org/go/bookletsurvey. Your feedback will help LBDA better understand and meet the needs of LBD families.

For those of you who are not familiar with it yet, An Introduction to Lewy Body Dementia is written especially for those newly diagnosed with Lewy Body Dementia and others still seeking answers. The booklet also includes a detachable medical alert card which refers to a companion webpage for ER physicians. You can view the booklet online in English and Spanish by clicking here.

If you would like to receive a hardcopy of the booklet, please visit your local Area Agency on Aging or click here to learn how to request your copy of the booklet or wallet card by mail.

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Dad had a pretty good day today. From the moment he awoke, he was asking about the inauguration. He quickly got dressed and came out to watch the inauguration on the TV. You could tell he was excited about the day’s historic events as he’s usually not a morning person but today we was up and ready earlier than usual. He was happily chanting, “Obama! Obama!”

After watching President Obama being sworn in, we took Dad to his appointment with his neurologist at the local hospital. We had to deal with a scheduling conflict on their end and a two hour wait but Dad finally saw his doctor for a regular check up. The neurologist was pleasantly surprised to see Dad doing so well. He agreed that things were going well and not to mess with the medication. He also agreed that the Sinemet could have been the source of the terrifying hallucinations and said to just keep on doing what we’re doing. I’m glad we’re the experts! We made an appointment to follow up in another three months.

After seeing his neurologist, we took Dad down to the blood lab for his regular blood work for his pulmonary embolism. After waiting some more, Dad finally had his blood drawn except there were a few problems. First, he fainted. Secondly, they could not get any blood flowing from his veins. Apparently Dad was dehydrated and therefore dehydration thickens the blood causing no flow and led him to pass out. Dad’s blood is already dangerously thick- so much so that the doctors and nurses are worried about a stroke. So, we’re working on thinning out the blood and hopefully tomorrow after we get the results back, we’ll have better news on his blood levels.  Of course, Dad was completely in denial that he fainted. He thought we were telling lies and it never happened. He does not remember but most people who pass out don’t remember, either.

After Dad’s fainting spell, he was feeling better so we went out for lunch. Dad had his large glass of water and a chicken pot pie. He ate every single morsel. At least he still has his appetite!

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For several days, every morning when Dad wakes, he has been asking, “What day is it?” “Is it inauguration day?” He proudly tells us that “Osama-Bama”, which is how he unfortunately refers to Barack Obama in his morning haze, is going to be president and Joe Biden, Vice President. He’s been looking forward to watching the inauguration and now here we are, the night before the historic inauguration of President-Elect Barack Obama. Dad is ready to watch history be made, as are we all. We’re waiting, we’re excited and we’re hopeful. Change is a good thing.

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Well here we are, heading into a brand new year and I’m finally getting around to a New Year’s reflection post.

As I look back upon 2008, I feel uneasy and stressed just thinking about it. 2008 was a difficult year for our family. Husband and I packed up our lives in Australia and moved home to help care for Dad. Dad’s health seemed to be declining rather rapidly and then we had to deal with the shock of his pulmonary embolism. We had two hospitalization and along with that, mounting medical bills and financial uncertainty. All year long, stress levels were extremely high, everyone was on edge, and we were burnt out. Times were trying and our strength tested many times over. Regretful words have been exchanged, patience has been lost and tears of sorrow and grief have been shed. Dealing with Lewy is definitely the most challenging journey our family has dealt with. Slowly, we are learning to live with the fact that life is not fair and in the end, it is what it is.

I must say that I am very grateful that we are a tight-knit, loving family. We are fairly strong and we stick together thick and thin. When times are tough we rally around each other as we weather the storm. We will continue to be each other’s support and even though we may hit a nerve with one another from time to time, we know we’ll still be there for each other. I am thankful that we are a family that wants to help each other. Despite trying to have our own lives, we know the importance of doing the right thing and being there for Dad. I know in the future, Dad’s health will worsen and times will become increasingly more difficult. At times during 2008, I thought things were really bad but I know we haven’t even touched the tip of the iceberg yet. In many ways, I am afraid of what a new year has in store for us. It means one more year of Dad slipping away, watching him deteriorate before our eyes.

Thinking about this past year leads me to reflect upon my life down under. While I loved my life in Australia I was also torn. I was sad that Mom was handling Dad all on her own. It was incredibly difficult but at the same time she wanted her kids to live their lives. I was happy to stay in Australia but in the end, Husband and I knew it was not the right thing to do. I didn’t want to miss any more time with my Dad. I was already sorry I had missed the last of his “good years” before Lewy set in. At the same time, I didn’t want to give up my life in OZ. In the end, I know we made the right choice in moving back to the US but every now and then, a part of me wishes I was still in Australia, or for that matter that Dad was healthy and Lewy was a word we never needed to know. We all make sacrifices in our lives and I know this was part of our journey.

Looking back on what has transpired in 2008, we have definitely learned a lot of lessons. Each year we live with Lewy, the more experienced and wiser we become in dealing with what is thrown at us. In 2009, I resolve to do some things differently. For one, patience with my family has never been an attribute of mine. When it comes to work and friends, I have all the patience in the world, however, when it involves my family, for some reason it’s easy to blow my gasket. Needless to say, dealing with Lewy has tried my patience level in more ways than one. I am going to work on being more patient and by doing that, reduce my stress. I need to learn to take a deep breath and step back for a moment. Along with my loss of patience and increased stress, I’ve found myself being more negative, testy and less cheery. I used to have a “no worries” attitude that I acquired from the Aussies. Well, that has definitely gone out the window. I am a major worrier and take on the burdens of others to add to my worries. I need to stop it. I can’t save the world and not everything works out for the best. Life happens- it can be wonderful or it can be cruel. Life is unpredictable and the obstacles we must overcome are part of our life lessons. It’s time to relax, enjoy life and make the most of our time together.

The coming years are going to be difficult. Often times I feel overwhelmed with all that has to be handled and all the uncertainty, waiting and unpredictability. I am scared thinking about medicare, medicaid, nursing homes, home health aids, hospital bills, insurance, elder care attorneys and how everything all works. I fear for Mom that she will lose everything if we have to place Dad in a facility. I worry about how and when we’ll get Dad back to Boston. I worry that we don’t have enough money to care for Dad. I worry that his doctors here don’t know what they’re doing and that in fact, they are actually causing unknown harm to him. There are just so many uknowns and it’s a killer trying to figure it all out. I just pray that we are making the right decision for Dad. I believe we are his best advocates, that we know best. I just hope our best is the right course of action.

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I’m happy to report Dad is improving these days. It started around Christmas time and it has been increasingly getting better. I don’t know if he was in a phase that’s part of the Lewy rollercoaster or if it was a result of the amount of medication he was on, or, a combination of everything. I’m thinking his decline had more to do with the medication.

I believe Dad is on a very high dosage of Sinemet- too high, however, his neurologist thinks he needs it all because Dad is extremely rigid and stiff. The doctor doesn’t want to lessen the dosage, however, we were getting desperate to help relieve Dad of his terrifying hallucinations and so we decided to reduce the Sinemet on our own- knowing the drug’s side effects can cause hallucinations. As a result of the reduction, his hallucinations have basically gone away and he is much happier, eating well again and is acting a bit like his old self. His walking has even improved and he’s not shuffling as much as he used to. I think he’s on a much better dosage now and hopefully it will stay its course. It’s amazing how much of a balancing act LBD is with the various medications and it has to be re-evaluated from time to time. This is something we need to make the doctors understand. Just because the prescription drugs were working for a while doesn’t mean it always will be that way.

Dad has improved so much that on Friday night we were able to go out to dinner and he ate everything on his plate. Sunday we went to the movies and out to dinner again- he ate everything. Last night he accompanied me on some errands to the dry cleaner and the grocery store and we puttered around outside working around the yard.

I’m really hoping he keeps up his improvement because things were really horrible for quite a while. Fingers crossed.

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