Good Days

I haven’t updated about Dad in quite a while so I thought I would take a little time now while my little one sleeps. She keeps me pretty busy these days and as a result, the blogging tends to get put on the back burner. I want to try and be better about posting about our journey, Dad and our memories. We’ve had a pretty good summer and I can hardly believe October is upon us, already. I have a lot of catch up posting to do so hopefully I’ll get to it soon.

Overall, Dad has been doing well lately. While he still battles daily with some hallucinations, they aren’t nearly as bad as a few months ago. In general, he’s still worried about his “friends” stealing things around the house so everything is hidden, the cabinets, pantry door and refrigerator are barricaded after each use with kitchen utensils. Some times, Dad will jump up from his chair and run to the front door to make sure someone is not breaking in. It’s a bit frustrating when you put down your glasses for a minute and they’ve disappeared and Dad doesn’t remember where he’s hid them for safe keeping. Needless to say, things go missing for weeks until it’s finally uncovered. We’re getting used to it but it’s still frustrating we can’t put anything down for two seconds without it disappearing.

Aside from those issues, things have been much better around here. Dad is aware he’s been doing well, too. He’s eager to go out each day and go to the movies, have lunch or run errands. He’s helping around the house with setting the dinner table and wiping it clean after each use. He picks up the dog poop each day and gets the mail every morning. The only household chore he struggles with but insists on doing is taking out the trash. No matter how many times we tell him, show him, change the position of the cans, Dad always puts the trash into the recycle bin and the recycles in the trash. Despite printing the words “RECYCLE” and “TRASH” on each can, he still mixes it up. So every time he takes the trash out, we have to follow behind and switch it around.

I think Dad is also enjoying have his granddaughter around. He does so well with her and every now and then, he’ll just get up on his own and start playing with Baby on the floor. It’s so wonderful to watch the two of them and I try to grab my camera and snap a shot or two so I’ll always have that memory for Baby.

Well, Baby is starting to stir so I’ll stop here for now. Hope all is well with all my readers.

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NEW REPORT HIGHLIGHTS DELAYED DIAGNOSIS AND CAREGIVER BURDEN IN LEWY BODY DEMENTIAS

ATLANTA, GEORGIA, USA, July 12, 2010 – Nearly 80% of people with Lewy body dementias (LBD) received a diagnosis for a different cognitive, movement or psychiatric disorder before ultimately learning they had LBD, according to the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias, released today.

This new report reveals people with LBD and their caregivers face barriers to obtaining an early LBD diagnosis. Caregivers rate specialists and general practitioners as inadequate in discussing disease progression. Additionally, caregivers experience moderate to severe emotional burden, and most experience a sense of isolation because so few people know about LBD.

LBD is the second-most common form of degenerative dementia in the elderly, affecting an estimated 1.3 million people in the United States. Symptoms include dementia, unpredictable variations in cognition, attention or alertness; hallucinations, Parkinson’s-like symptoms, a sleep disorder characterized by physically acting out vivid nightmares and dreams, and a potentially life-threatening sensitivity to certain medications.

“LBD is a family disease, affecting not just the person with LBD but also the caregiver,” said Angela Herron, President of LBDA’s Board of Directors. “This report underscores the challenges presented by a disease that affects cognition, movement, behavior, sleep and mood. Despite the fact that LBD is a common form of dementia many doctors and other medical professionals are unfamiliar with LBD, compounding the burden even further.”

Importance of Early Diagnosis and Physician Awareness of LBD

Half of people seeking a diagnosis saw 3 or more doctors for 10 visits over the course of a year before they were diagnosed with LBD, and diagnosis required more than two years from the onset of symptoms for 31% of cases.

Although prognosis varies among individuals, LBD is often a more rapidly progressive disease than Alzheimer’s disease, and early diagnosis provides families an opportunity to plan for expected decline in cognition, function and behavior. Given the evidence that suggests treatment with cholinesterase inhibitors may benefit patients with LBD more than those with Alzheimer’s disease, barriers to diagnosis have a negative impact on both the patients’ and caregivers’ quality of life. Especially important, early diagnosis of LBD provides physicians with an opportunity to minimize exposure to medications that may aggravate symptoms, such as antipsychotic medications. Nearly 60% of people with LBD may experience severe, potentially irreversible reactions to antipsychotic medications, and in rare cases, a life threatening condition called neuroleptic malignant syndrome may also occur.

LBD Progression Not Adequately Addressed

While neurologists made most LBD diagnoses, caregivers most often relied on primary care physicians for ongoing follow-up care and reported difficulties coordinating treatment of LBD symptoms between primary care physicians and specialists, as medication for one LBD symptom may worsen another being treated by a different physician. Caregivers rated over 40% of both generalists and specialists as inadequate in telling families what to expect in the future, and more than half of physicians as inadequate in suggesting telling the family where to find more information on LBD or community-based resources.

“The lack of information on disease progression is a serious challenge to LBD families,” stated Herron. “It’s essential that families plan in advance for the relentless progression of LBD, and not having answers on what that decline will look like or how fast it may occur, adds significant stress to an already difficult situation.”

Caregiver Burden is Physical and Emotional

Caregivers reported moderate to severe levels of disability in the person with LBD and over 90% had taken over instrumental activities of daily living, like preparing meals, managing medications, transportation, finances and appointments. Over 60% of caregivers indicated the person with LBD could not perform basic activities of daily living, such as dressing or bathing.

People with LBD had high rates of behavioral problems and mood changes and two-thirds of caregivers reported a crisis in the past year that required a hospital emergency room, emergency medical services, psychiatric care, or law enforcement.
LBD caregivers face a number of challenges: social, medical, functional and financial. LBD caregivers feel isolated and often have to respond to crises, but may not be receiving adequate support from family, friends or healthcare providers. These features have the potential to lead to adverse outcomes for the caregiver “burnout” including stress, depression and poor health.

“Poorer caregiver outcomes directly lead to increases in patient institutionalization and declines in quality of life, stated Dr. James E. Galvin, a member of LBDA’s Scientific Advisory Council and Professor of Neurology and Psychiatry at New York University. “This may be particularly important in LBD where patients are at an increased risk of institutionalization and mortality.”

The findings are based on data collected by the Lewy Body Dementia Association (LBDA) in an online survey of 962 LBD caregivers. Designed by Steven H. Zarit, PhD, an expert on caregiver burden in dementia and Professor of Human Development at Penn State University, the survey was conducted over a 6-month period. Dr. Galvin analyzed the survey data, which was published in the July, 2010 issue of Parkinsonism & Related Disorders and the April-June, 2010 issue of Alzheimer Disease & Associated Disorders.

The full text of the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias can be viewed by visiting http://www.lbda.org.

The Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA’s Scientific Advisory Council is comprised of leading experts from the United States, Canada, the United Kingdom, and Japan in research and clinical management of Lewy body dementias. To learn more about LBDA, visit

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Catching Up

Its been a while since I’ve posted regularly. Life has been busy with the addition of a little one. Our baby girl is doing so well, gaining weight and amazing us every day. She’s just the love of all of our lives and brings us so much joy. Dad does well with her and I truly think having a baby around has done wonders for him. I love watching him with her.

Dad is doing pretty well these days. He still has daily hallucinations but they’re not as terrifying- mostly annoying to him. He’s often chasing them out of the house or yelling at them. Despite his daily visitors throughout the day and his usual Lewy quirks and ticks, Dad is much better these days. We don’t know how long his “good” streak will last but it’s nice to see Dad back in action. He is certainly more active and wants to stay busy. These days, he’s getting up early, showered and dressed so he can go out. He’s all about going out every day. He often gets on Mom’s case that she’s not getting dressed quickly enough. He always wants to go out for lunch or dinner and run errands. If Mom needs a day to stay at home to do bills and paperwork, Dad gets a little miffed. He expects to go out every day. When I’m there, I take him out as much as I can.

Right now, my Husband, daughter and I are in Australia for a little while. Mom seems to be doing okay on her own with Dad. Her brother is there visiting for a few weeks so that’s great she has some company. My sister will be heading home shortly, too, for the summer and then we’ll be back there in a bit.

I’ll try to update more regularly now that things are settling down.

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Good Days

The past several days Dad has been doing pretty well. We all went out for dinner the other night and the day before that, Dad wanted to run out and do some Christmas shopping. We’re missing our tree skirt, for some reason, so Dad has been itching to go and buy one. So, Husband and I took Dad out, he picked one out and then he wanted to go for ice cream so we did. He loves his ice cream! Then he wanted to go Christmas shopping for Mom so we all took him out and he picked out a few things for Mom. He was pretty active in picking out what he wanted for her- I gave him some ideas and he picked out the type, the colors and the patterns. I even picked out some stuff I thought Mom would like but he knixed my choices and chose his own. He got her some lovely things that I think she’ll enjoy. We even did a little more shopping yesterday and Dad was fixed on going to the DKNY outlet to buy some DKNY socks- they’re his favorite. Unfortunately, they didn’t have the kind he wanted so that means I’ll head out to find them elsewhere. He seriously loves his DKNY socks.

With Dad, he can be hesitant about change- as he was with us putting up a Christmas tree and the wreath- but once it happens, he adapts and gets on with it. Dad has definitley adjusted to the idea of Christmas and it’s now a part of his routine. He’s seems to be enjoying the season as we witness him running to the mailbox every morning to check the mail for Christmas cards and gifts, wanting to finish off the tree with a proper tree skirt and checking out the neighborhoods decorated with holiday lights. He gets a big kick out of watching the movie, Home Alone. It always makes him laugh something wicked which in return makes us laugh, too. It’s nice to be together for the holidays to share the little moments that become memories.

Overall, Dad seems to be more lucid these days but his hallucinations are still giving him some trouble. While they’re bothersome for Dad, his hallucinations appear to be not as severe- more annoying to him more than anything else. He doesn’t seem to be so terrified by them like he was a little while ago. Hopefully the improvement continues.

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Bah Humbug

With the Christmas season upon us, the fam has begun to decorate the house for the holidays. We’ve strung up some lights and decorated the tree but not without Scrooge, aka Dad, trying to put the kibosh on our Christmas spirit.

Since December 1st, we’ve been prepping Dad that Christmas is coming and we’ll be decorating soon. We talked about what he may want for Christmas (he has no ideas) and that Sister will be here to celebrate with us, too. We marked Christmas on the calendar and have Dad count the number of days until the big day. With all that, he still can’t seem to comprehend that Christmas is around the corner. It could be an indication that Lewy is taking greater control over Dad’s mind and body or he’s just heavily medicated right now (due to the hallucinations) making it difficult for Dad to understand.

When there is a Christmas movie on TV, he immediately demands us to turn it off… “It’s too early. This can’t be right.” When we’re in the car and the radio plays Christmas music, he wants it shut off. I don’t think it’s so much that Dad isn’t in the Christmas spirit, it’s that Christmas is a change from his normal everyday routine. With the advancement of Lewy taking over (or the medication tinkering), he can’t handle change as well as he once could. He has trouble comprehending that Christmas is less than 3 weeks away and I see that as a sign in the breakdown of his cognitive & reasoning skills.

With all that in mind, we decided to gently ease in to the Christmas decorations. We brought out the Christmas wreath a few days ago and let it sit around the house before hanging so Dad could get used to it. He immediately wanted us to put it away- “it wasn’t time.” Yesterday, we started decorating for the season and Dad had a bit of a tizzy that we were putting up the Christmas tree. We tried to get him to help hang the ornaments, but he didn’t want any part in it. He really doesn’t want to help with anything anymore so I guess we weren’t surprised that he could care less about decorating the tree.

I’ll probably try taking Dad out this week to do some Christmas shopping. We’ll see how that goes. He likes getting out of the house so maybe it won’t be so bad although a decorated mall could possibly disorient him. Maybe I’ll start small with individual store visits before heading to any major shopping centers. Just maybe, he’ll come around slowly but surely as he gets acclimated to the idea of Christmas, or rather, change.

UPDATE: As usual, after the change in his routine, Dad has adjusted and is enjoying the tree and wreath. We even went Christmas shopping yesterday and Dad helped pick out some presents for Mom.

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California Bound

Husband and I are heading out to California tomorrow morning and we’ll be there until after the new year. I know Mom is certainly looking forward to our return and I’m happy to get out there to help her. Things have been very stressful for her lately. She definitely needs some respite and assistance as Dad has been quite the handful, especially today. He’s been incredibly difficult to manage with his raving hallucinations- he’s completely out of touch with reality. There’s no coaxing him back to the real world- he just lives in a world terrorized by his hallucinations. It’s crazy how this Lewy roller coaster works because yesterday he had such a good day and today you would think he needed to be in the hospital or something.

There’s a lot to be done while we’re out there and hopefully we can make some progress on getting things sorted.

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Doctor’s Visit

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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Getting Worse

Mom has been having quite a difficult time with Dad lately. His hallucinations are constant and terrifying, and, the lack of sleep is quite a problem. As frustrating and worrisome it is for Mom in dealing with Dad’s latest cycle of hallucinations and sleeplessness, we all can’t help but wonder what Dad must be feeling and thinking. Mom overheard Dad the other day telling his hallucinations, “Mom says you’re not really here, go away, leave me alone” followed by “If this keeps up I don’t know how much longer I can go on.” I suspect the latter part of his statement was in reference to warding off the offenders as to keep the house and family safe rather than relating to ending his life or anything like that. He’s running on empty with no sleep- completely strung out- and I think it’s obviously wearing him down. Yet, Dad is compelled to keep protecting us from the bad people in his hallucinations.

When Dad is dealing with his hallucinations it’s like he’s in another world and we can’t snap him out of it. With that in mind, it was rather surprising to hear Dad had actually taken on board what Mom told him about the hallucinations. Mostly we try to reassure Dad that everything is okay and no one is here or we kick out the offenders, depending on the situation. Of course the offenders return to torment Dad and then Dad resumes his duty of protecting the family and running around the house and outside to ward off the danger.

As a result of the hallucinations, Dad is also resorting to locking up the fridge at night with various poles and what not. Mom recently bought some gifts for the baby and Dad is obsessed with them. He’s constantly protecting them and even sleeps with them because the bad people want to steal the baby gifts. Whenever the phone goes missing, it’s immediately the fault of the people in his hallucinations. Things are going missing from around the house- most likely from Dad hiding them from the bad people. Poor Puppy isn’t allowed out of the house because Dad thinks people are going to hurt her. Before, when we would go out for lunch or run errands, the hallucinations would stop but now Mom finds Dad carrying on with his hallucinations in public. There is some worry that for now, the ability to venture out for the both of them is numbered until hopefully he rolls in to a new cycle. Until a new cycle transitions, Dad greets each day only to be tortured by his hallucinations and poor Mom is left to pick up the pieces.

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Sleepless in the Desert

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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Weekend Getaway

This past weekend, the hubs and I went away for the weekend. It was nice to get away for a bit but I always feel guilty leaving Mom alone with Dad. Luckily he’s been relatively okay so it wasn’t completely horrible for her to handle on her own. However, I wish Mom was able to go away for a weekend from time to time. She’s well overdue for some much needed respite. Even though we’re here to help and Mom is able to get out of the house, Dad is still extremely dependent upon her for nearly everything and he wants to go wherever she goes. Sometimes, she just needs a break from it all. There’s nothing like some R&R to refresh one’s body and soul.

Like I mentioned, Dad fared pretty well over the weekend. We believe some of his improvements can be attributed to the recent reduction of Dad’s daily Seroquel dosage. I can honestly say I immediately noticed the difference in his behavior when the Hubs and I arrived home. Dad was much more alert and jolly… the foggy haze had been lifted. Since Dad isn’t having the horrible hallucinations anymore it seemed like the reduction was necessary for the time being.

Now that Dad is more alert, he’s trying to re-assert his independence a bit more, forgetting that he used to rely on us for nearly everything. When we try to assist him with daily tasks, Dad can get agitated or upset that we’re helping him and he’ll snap at us. Me being the impatient one of course snaps back… something I have to work on, I know! Dad is also terribly stubborn resulting in much grief and exasperation on our parts but I’ll gladly take him doing well rather than the bad.

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History and Hospital Visits

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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Things Are Looking Up

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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Went to the Doctor

Amazingly enough, we managed to get Dad out the door for his doctor’s appointment the other day. It was a pretty routine check up and the GP went over the lab results in which everything came back fine. They did not do a test for a urinary tract infection (UTI), however, the doctor said there would be signs if Dad had a UTI. According to the doc, he wasn’t exhibiting any of them. For those not familiar, UTIs are common in LBDers and can completely throw their system out of whack. We were thinking that maybe Dad’s recent ballistic episodes were a result of a possible UTI, however, I guess that is not the case. Of course, Dad put on a show for the doctor and told the doc that everything was fine- no problems at all. Seriously, it’s so frustrating how he can just turn it on for the doctors. Meanwhile, minutes before he saw the doctor he was talking to his “friends” aka the people he sees in his hallucinations.

So, we’re home and still dealing with Dad’s constant hallucinations and delusions. He has such a one track mind in terms of if he gets an idea in his head he is so focused on it until the idea can be completed, resolved or whatever the case may be. In some ways, it’s unbelievable and difficult to see and manage what he deals with on a daily basis. We’ve reduced the Sinemet on our own to see if that makes a difference as Sinemet can cause hallucinations. So far, I would say the reduction has not made a difference.

I know I’ve probably been a Debbie Downer lately but unfortunately, it is what it is. Hopefully the new year will bring improvement or some sort of normalcy and then the blog will be a little happier. A girl can dream, right?

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Hanging In There… Barely

I wish I had better news to report but unfortunately things are still really terrible with Dad. He is experiencing constant delusions and hallucinations- both visual and auditory. I can only imagine what he must be thinking and feeling- he has to be so scared. There’s no other way to describe what’s going on with Dad other than he’s just acting completely out of his mind. There’s just no getting through to him in order to manage his behavior.

Dad thinks the ‘Shards’ are still attacking, the Gardener and his people are in the house, his doctors and their families are dead or God is commanding him to do certain things.  He’s consumed with the fact that he has a blood clot, which he believes is in his head instead of in his lung where it really is, and that he’s going to die from it if he doesn’t get a special surgery to save him.  Dad is still extremely OCD when he’s a little clearer and when he is a little more manageable, he paces back and forth for hours talking to people- we don’t know who? He seems to be afraid of anything electrical like the TV, the trash compactor, the lights on the Christmas tree, etc.

Despite Dad being so over-exhausted, he is still fighting strong and we are definitely on guard. As a result we don’t sleep much for fear he’ll try to run out of the house not to mention that he’s up at all hours of the night. The other evening, he had Mom in a choke hold for a few seconds and then relented when we tried to prevent him from fleeing the house. When we work to get him in the shower or to take his pills, he fights us something terrible. Sometimes we just let it go and walk away but there are times when it’s just not possible.

Dad is refusing to take his medication, he’s not eating and not sleeping very much. I’m sure all of these things are adding his condition. Every now and then we can get some pills and food in to him, but it’s not consistent and stable enough to make a difference to his current state.

We feel like we’re fighting a losing battle. We just don’t know how to get Dad back to reality, back to us. No matter what we try, nothing works. It’s so sad and yet such a tiring handful to deal with constantly. We’re all completely exhausted, emotionally and physically drained.

Mom is deeply saddened and I feel absolutely awful for her. It’s extremely difficult watching Dad succumb to this terrible disease but I would think it’s even harder for Mom to face. I can only imagine what it’s like to watch your spouse disappear into Lewy land. To know your life partner, your best friend of 34 years is no longer with you in mind and spirit- that has got to be the worst feeling. The emptiness, the loneliness, the loss and sorrow, the feeling of an uncertain future without your beloved- it has to be completely gutting. We all grieve for Dad but more times than not I feel like we don’t even have time to grieve as we’re too busy trying to keep up with the Lewy rollercoaster. I could delve in to our own emotional rollercoaster but I think that’s a topic for a different time.

As for our recent doctor’s visit, the neurologist wasn’t able to help us that much. Dad wasn’t able to make the appointment but Mom still went in hopes of being able to see the doctor to get some much needed help. Unfortunately he was basically only able to offer up a few nursing home suggestions. We have a call in to Dad’s psychiatrist and we’re waiting to hear back on her opinion.

So for now, please keep us in your thoughts or say a prayer. Thanks to all who continue to offer us kind words of love and support.

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Knocked Down But Not Out For The Count

Last night was absolutely horrific. Dad awoke in the night with some terrifying hallucinations. Lately he’s been hallucinating about a killer dog, Butch, in our yard who’s going to kill us. There are also these people/things called Shards outside that want to kill all of us. Therefore, he’s obsessed with having all of the doors closed and locked. For a while we just rolled with it but last night it all blew up.

According to Dad, before sunrise the Shards were outside, ready to attack us. He quickly spun out of control. I won’t go in to all the details but the gist of it all is he was trying to get out of the house and wanted us to put out an S.O.S. (used to be in the Navy) to stop the Shards. Eventually we took Dad outside to show him there were no Shards, but of course he didn’t believe it. We finally returned back inside and by that point he had gone completely bonkers and was aggressive and combative. Clothes were ripped off and he was trying to run out of the house naked to go get our next door neighbor.

Long story short, he became violent when we tried to get him to stay in the house and put his clothes back on. I ended up getting socked in the face with a hard punch to my mouth. It’s the first time ever in my life I’ve been punched and unfortunately it was by my father. When he gets combative we’re all usually on guard but he caught me in a moment when I wasn’t expecting anything. I’m currently sporting split, swollen lips but my teeth are intact- just very sore and I think I have a bit of a hairline fracture in one of them. I guess the silver lining is I now have plump lips a la Angelina Jolie and I got them for free, ha ha! I’m not making light of the situation, but sometimes you have to find humor in the worst of situations just to stay somewhat sane.

And for anyone reading this blog who isn’t familiar with LBD, please know that before this disease, my Dad was kind, gentle and protective. He would never have done anything to hurt anyone. His aggressive nature and combativeness is all due to this insidious disease. I realize Dad is not my Dad anymore as he would never do such harm. It’s the Lewy monster inside him that drives him to the brink- he has no control whatsoever.

This morning, Dad doesn’t have much recollection of what happened or else he’s forgetting about it. He was sorry he hit me when it happened but two seconds later was trying to bolt out of the house. There was just nothing we could do.

We have an appointment tomorrow at 8:30am with Dad’s neurologist. It was the only appointment we could get before December 22, but unfortunately I have a feeling we won’t be making it. Dad’s worst times are in the morning and I’ll be really surprised if we’re able to get him out of the house. Rest assure, we’ll try our hardest. We desperately need help and a resolution to this situation.

We are all physically and emotionally exhausted, angry, frustrated and sad. We are living in Lewy Body hell. For now, Dad may have knocked us down but we are not giving up. We will continue to do our best no matter what this disease throws our way.

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