Posts Tagged ‘Hallucinations’

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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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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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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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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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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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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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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