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Posts Tagged ‘Doctor’

Mom took Dad to see the doctor last week. He has been having constant hallucinations that just won’t quit. The poor guy is a tortured soul and Mom is completely sleep deprived. The Doc prescribed him Remeron (Mirtazipine) to help lessen anxiety and it also increases drowsiness, which should hopefully help him sleep a bit more instead of battling his hallucinations all night long.

The first few nights Dad took the Remeron it worked like a charm. He slept the entire night through until 10:30am. However, its success was short-lived and Mom has been awake every night since, all night long without anymore than 10-15 minutes of sleep at a time. He’s constantly haunted by his hallucinations and we just feel like no matter what we/the doctors try, nothing works… it’s just an awful time for both Dad and Mom. I just wish we could stop it somehow.

P.S. And for those wondering, Dad is already taking Seroquel. It helped for a long time but right now it’s not fitting the bill. He’s still taking it but it does not stop or even subdue his hallucinations at this time.

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The other day, Dad had an appointment with his primary care physician. The Doc was very pleased with how Dad was doing and thought he seemed happier. He was also happy to see Dad’s blood pressure was up and within a normal range again so that’s great news. It was just way too low before. Overall, things went well and the Doc didn’t really have any concerns.

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Dad’s other VA prescription arrived in the mail Thursday. Wow, the VA actually came through for us, woo hoo! We’re still waiting to hear about the full work up at the main clinic… hopefully soon.

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Dad’s VA prescriptions arrived in the mail yesterday and so far they appear to be free! The only thing is the doctors supposedly ordered three prescriptions and only two came. We don’t know if the other is on its way or if it’s not coming at all. I guess we’ll wait a few more days to find out. The other thing is they gave us the generic versions of the drugs. Hopefully this won’t be a problem. At the very least, we can try it and if it doesn’t work, then that is more proof to go back to the VA and tell them we need the brand name. The doctors mentioned the VA pharmacy might do this and it’s a process. You have to try the generic and if it doesn’t work, then it’s more support for having the VA issue us the brand name.

We’re still waiting on the  VA clinic referral to come through for Dad to get a full work up and testing. I hope it comes through soon because Dad still needs his other meds that are normally prescribed by the neurologist.  The last VA visit they said Dad would have to wait for the work up to get the neuro meds.  Fingers crossed it all comes together soon.

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I know, I have to post pics from Dad’s birthday weekend but in the mean time I’ll post about Dad’s recent visit to the VA clinic.

A while back we applied for VA benefits hoping Dad would be eligible and what do you know… he was accepted in to the VA system. (Finally something “good” works out for us). We made an appointment with a primary care physican and an appointment afterward to discuss some of the benefits and how it all works with an in-take processor.

Well, the first appointment was so entirely frustrating I just wanted to burst. We arrived 15 minutes early and checked in at the desk saying we had a 9:15am appointment with the doctor and this was Dad’s first visit. The receptionist then asks if we have a VA card and we say no, not yet. She gets all annoyed for some unknown reason and tells us we can’t use this window and to go around the corner. So, we go around the corner and a woman behind the glass flags us over. We tell her the same things and she responds with, why are you telling me this, you need to check in over there. So, Mum is like well, you flagged me down, I thought I was suppose to go here to check in for our appointment. The woman then acts as if Mom is an idiot and chases her away to what is supposedly the “eligibility desk.” Why we had to check in here, I don’t know but we’re following the directions of the first rude receptionist. Mom tells the guy the same speech and he calls someone to let them know we’re here for our appointment with the doctor and the in-take processor. Meanwhile the four witchy women at the first check-in desk are whinging about us behind the glass window. However, just because there is glass there doesn’t mean they were inaudible- we could hear everything they said. I should have gone up and told them how unprofessional and rude they were being but being the nice person that I am, I didn’t want to ruffle any feathers on our first visit. Instead, I sat in my chair fuming. They were completely rude, witchy and poking fun at our expense. I also witnessed their behavior with other people checking in- the same inappropriate treatment as we experienced. Based on my observations of these four receptionists, apparently the VA isn’t that busy, like we hear about all the time on the news, because these four “receptionists” did nothing but mock patients, gossip, complain, talk on their cell phones and sit around looking bored. Good to know our tax paying dollars pay them to do these highly productive tasks. Apparently, the only criteria you need to be hired by this particular VA clinic is to be a nasty witch and enjoy collecting a paycheck for sitting around doing nothing.

Eventually Mom & Dad are called to meet with the in-take processor and he goes over the benefits. Unfortunately, Dad won’t be getting any dental benefits which is too bad because he needs some work done- a few missing/cracked teeth! On the other hand, his medical care will be taken care of if we use the VA system. (Later, the doctor was honest with us and said we currently have some of the best doctors in the area and to stick with them- don’t go with the VA docs for neurology & psychiatry!) A great thing about being in the VA is that the prescriptions will only cost $8 max which will be a huge savings for us. At the completion of the appointment, the officer was surprised to hear we hadn’t been called for our PCP appointment yet. He went over to the four receptionists and basically told them we hadn’t been called and we’ve been here for an hour now. The first receptionist then says, we marked you as a NO-SHOW! What?! We’ve been here for over an hour! She then proceeds to start fighting with us saying we never said we had an appointment and of course we rehash our conversation with the first reception and the one that flagged us over and brushed us off. They both get all defensive and say we never told them we had an appointment… seriously. They were like vultures ready to attacks us- thank goodness for the glass window or they would have gone all crazy on us. It was definitely the most unprofessional behavior I’ve seen. The people in the waiting room were shocked and quite frankly said this is rather standard to receive horrible treatment from them. So much for taking care of their Veterans with honor and grace.

After all the hoopla settles down, the in-take coordinator gets us an appointment to come back the next day. We see the doctor and he is super nice- spends over an hour with us. Unfortunately he said he can’t prescribe us any of the drugs the neurologist or physciatrist order because only a VA neuro or psych can order those. We’d have to go the VA hospital which is over an hour away to see them and get prescriptions. He thought it best to just stay with our regular doctors. However, the prescriptions savings would be considerable so we’re considering going to see a VA neuro and psych just once to tell them the prescriptions Dad takes and have them write the script and then we’ll get them through the VA.

For what it’s worth, at the second visit, we did ask to speak with the office manager when we checked in. We were told she was “on a conference call” and is unavailable… um, sure she was- how convenient for you! We told the doctor what happened the day before and he said we should speak with the office manager and of course we told him she was on a conference call. And to add to it all, do you know what we received in the mail the other day… a notice from the VA saying their records show we failed to report for our appointment! The nerve! The note then went on to lay on a guilt trip saying since we pulled a “No-Show” we stole precious time away from another Veteran who could have received care… seriously, these people know how to strike a nerve… GRRRRR!

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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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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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