A Week To Remember

It All Begins with Awareness…

Awareness builds knowledge.
Knowledge builds power.
Power builds research.
Research builds treatment.
Treatment builds hope.

Awareness is our beacon. It’s how Lewy body dementia will come out of the shadows and into the public eye.

The Lewy Body Dementia Association is committed to increasing awareness about LBD 365 days a year. This year, October 10-16 will truly be A Week To Remember as LBD families are Standing Strong with LBDA to raise LBD awareness and support throughout the country.

Participate by selecting at least ONE activity from any of the three links below. Together, we are…

Increasing Knowledge: Help to advance the cause by getting involved in community-based awareness efforts. Let’s make Lewy body dementia a household word!

Sharing Experience: No one should have to face LBD alone. Participate in one of the many ways LBD families connect to share their personal experiences of living with LBD.

Building Hope: Your much-needed support of LBDA’s mission means new hope for the 1.3 million families who are living with this devastating disease.

Join us or learn more about how you can Stand Strong with the 1.3 million families affected by Lewy body dementia.

Click here for LBD Awareness Week Resources you can download, including our LBD Awareness Kit – filled with ideas and tips on how YOU can help make October 10-16, 2010 A Week To Remember.

If you have questions about raising LBD awareness in your community,
contact us at awareness@lbda.org or 404-935-6444, ext. 104

Read Full Post »

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

Read Full Post »

INCREASING KNOWLEDGE: Interviews on Capgras Syndrome sought in Texas and California

INCREASING KNOWLEDGE: Interviews on Capgras Syndrome sought in Texas and California

LBDA is urgently seeking persons in Texas or California who have Capgras syndrome, along with their caregiver, for possible interview with an international psychology magazine. Capgras syndrome, which can occur in LBD, is a disorder in which a person holds a delusion that a friend, spouse, parent or other close family member has been replaced by an identical-looking impostor. Those interested are encouraged to send a brief summary about your personal experience with Capgras syndrome in LBD to Angela Taylor at ataylor@lbda.org.

Read Full Post »

Family Caregiver of the Year Award

SEEKING NOMINATIONS—FAMILY CAREGIVER OF THE YEAR AWARD

Homewatch CareGivers is seeking community nominations for its annual Family Caregiver of the Year” award program. In addition to dozens of local awards, nominees have the opportunity to win a $5,000 grand prize for the national award.

The National Family Caregiver of the Year Award nomination entries will be judged based on the magnitude of care and support provided to an individual, personal obstacles that were overcome in order to provide this care, health care industry obstacles faced on behalf of the individual receiving care, and the impact this care has ultimately had on the individual.

A third-party must submit each nomination, and it’s recommended that the nominator include a nomination letter of 500 words or less with the application. Homewatch CareGivers must be able to verify the individual for which the nominee provided care, and the nominee’s care must have been provided within the 12 months prior to July 26, 2010.

Nominations will be accepted through July 31 by clicking here. A panel including experts from AARP, the Alzheimer’s Association, and CareScout/Genworth Financial, and more, will judge submissions.

Local winners will be announced September 1, 2010. The national winner will be announced October 25, 2010. All winning nominations should be prepared for possible interviews and media appearances.

To fill out a nomination application for someone in your community click here, or call 800-777-9770 and ask for the Homewatch CareGivers office in your geographic area.

Read Full Post »

Easter Day

I realize Easter was about three weeks ago but I still want to post a few pictures from the day. Here’s Grandpa, Grandma and Baby.

We had a lovely day relaxing at home and enjoyed a delicious home cooked family dinner together. I hope everyone’s Easter/Passover was just as nice.

Dad has been doing well and I’ll write a separate post about that later. He’s enjoying his granddaughter and he really seems to do a lot better with her around. Dad likes singing to Baby while rocking her in his recliner. He’s always commenting on what a beautiful baby she is. I just love it. I’m so glad Dad is able to love Baby, remember Baby and enjoy her. Their time together, I will always cherish. I only wish he didn’t have this disease and Baby could grow up knowing my real Dad for a long time, not Lewy Dad.

Read Full Post »

She’s Out of There!

Just a quick note that our baby girl is finally out of the NICU and home with her Mom and Dad. Yay!

Thank you to all for the continued well wishes and support. It really means a lot to us that people all over the country and the world are thinking of our little girl. We sincerely thank you. xx

Read Full Post »

Word For Word

Lately when I talk with Dad on the phone he repeats everything back to me, practically word for word. I’m not sure if he’s doing it because he’s making sure he hears everything correctly, or, he’s not able to focus on the conversation so he parrots what you say as if he’s able to follow along. I have the suspicion it the latter as it’s easy to tell over the phone when he’s out of sorts. When he is having a good day, he’s able to ask questions and engage a little more. When it’s a bad day, I have to lead the conversation and constantly talk and wait for Dad to repeat me, sentence after sentence. Even when he is having a bad day (which is just about every day lately) he’s eager to talk with me over the phone so that’s still a good sign he hasn’t lost all focus, interest or ability.

I do find it amazing that even when Dad is having a bad day, Dad can still perk up for ‘showtime’ and hold a “normal” conversation- as if everything is fine. The second he’s off the phone, he’s back to being completely out of it again. This is especially true when talking with friends, extended family members or doctors. It’s like the pressure is on and he’s able to perform rather perfectly giving others the sense that’s doing so well and nothing is wrong. But, when he’s around his immediate family, everything is wrong and no one sees or hears the reality of Dad’s health. I guess in a way, that’s probably a good thing as it gives Dad his dignity and allow him to keep up his self-esteem. Don’t get me wrong, he’s not always bad when he talks on the phone or sees a familiar face. It’s just when he’s been having a bad Lewy cycle and it’s been pure hell for Mom, Sister and I, I’m sure others think it can’t be that bad because he sounds so wonderful. This disease is so strange and frustrating.

Read Full Post »

Healthcare Reform

The below is from the National Family Caregivers Association website. You can also find it here.

HEALTHCARE REFORM IS GOOD FOR FAMILY CAREGIVERS

October 2009 — Yes, healthcare reform is good for all family caregivers and their loved ones.

It’s as simple as that. None of the plans currently being discussed in Congress are perfect. There definitely could be more initiatives to help those with chronic conditions and their family caregivers, but if healthcare reform passes, caregiving families will be far better off than they are today.

The Kaiser Family Foundation, a nonprofit foundation, now offers an interactive side-by-side health reform comparison tool which allows users to compare the leading comprehensive reform proposals put forth by the president and members of Congress. The Foundation will continue to update the tool to reflect major new proposals and any significant changes to the plans already introduced. Check out the issues that are most important to you here.

And then contact your representative and senators and tell them you support healthcare reform precisely because it will make life better for all caregiving families caring for loved ones with chronic conditions and disabilities.

November begins National Family Caregivers Month and the theme is “Speak Up.” It has never been more important for family caregivers to speak up to their representatives in Congress than it is right now as they debate and vote on health care reform. They need to hear from you today.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

Breaking the News

When the Hubs and I found out we were pregnant, Mom was out-of-state visiting Sister in NYC while Hubs and I stayed home with Dad. Keeping it a secret was pretty easy and we loved having it be “our” secret. Eventually we decided it was time to tell our folks. As timing would have it, Mom would be home the week of Father’s Day so we decided Sunday, June 21st would be the day to share our wonderful news. We had plans to go out for a Father’s Day dinner celebration and figured we would tell them then but our excitement got the better of us. We opted to have Dad open his presents earlier in the day at home rather than later at the dinner.

To tell them the good news, I had purchased a cheesy t-shirt and hat that said “World’s Greatest Grandpa” across it. I wrapped it in a large box with a pretty bow along with some other gifts to open before the big one. Dad opened his movie tickets and then a gift certificate to one of his favorite restaurants. Time came to open the last large box. As Dad opened it, he was thoroughly confused and appeared not to be catching on. The Hubs and I looked at each and kept waiting. Then, Mom piped in and was like, “Is that a joke because that could really be mean.” Our reply was of course it’s not. Then Mom said,  “well, the only way it wouldn’t be is if it means what it really means but it doesn’t.” To which we replied, “well it means what it means! We’re pregnant!” Mom & Dad were seriously confused and after a minute of letting the news sink in, they were beyond ecstatic.

Mom and Dad wanted to tell Sister right away so Mum took a picture of Dad holding up his Grandpa shirt on her cell and sent it to Sister. Sister calls and says, “What is that… did someone send that to Dad as a joke for Father’s Day?” Um, no! At this point Sister is on speaker phone so we all yell the good news to her which rendered her speechless for the first time in her life. Seriously, dead silence for 30 seconds and after we confirmed she was still on the line, she was like, “What? There’s a baby in your belly? You’re having a baby?!” Yes! Yes! Yes! To which congratulatory cheers were yelled and Sister got back to her crazy, chatty self.

After sharing the news with my family, we were on the phone to the Hub’s parents to continue our Father’s Day baby announcement. We were of course showered with more congratulatory wishes.

Dad has already decided we’re having a boy and corrects anyone who dares to call the baby a girl. It’s kind of funny and cute that he’s so keen on a boy. Maybe after having to deal with my Mom, Sister and I for so long, he’s ready to have a little buddy to pal around with for a while.

Read Full Post »

Happy Anniversary

Today is Mom & Dad’s 35th wedding anniversary. To celebrate, they along with Sister and Puppy went on a little road trip to Santa Barbara for the weekend. Although the Hubs and I weren’t there to join in the festivities, we were able to hear all about it and see some pictures.

The weekend consisted of checking out some of Santa Barbara’s wineries, snacking on delicious pastries and fudge in the Dutch style town of Solvang and then hitting the beach. From the sound of it, they all had a lovely anniversary dinner at a local restaurant inclusive of an acoustic guitar solo in their honor and a specialty dessert courtesy of the restaurant.

Here are a few pics of their weekend:

Looks like a lovely way to celebrate 35 years of marriage. Happy Anniversary, Mom & Dad! We love you. xx

Read Full Post »

Catching Up

Some of you who faithfully read this blog may have noticed over time that my entries have dropped off a bit. The frequency has decreased as things in my life have gotten hectic. So, those who continue to check for updates, I thank you for still following along. It’s time to get back in to blogging and so, I’ll catch you up on what’s been going on… a few entries at a time.

The first big bit of news is that the Husband and I have moved. After 14 months of living with and co-caring for Dad with Mom, the Hubs and I decided it’s time to focus on our future together. When we left Sydney, Australia to return home, we gladly did it knowing it was the right thing to do and that Mom and Dad needed help. Granted, we were newlyweds and never imagined that at 29 and 30 years of age we would be living with the parents but life happens and it was what was needed. Last year was not a good year for Dad and his health. Luckily, things have slowly improved after the New Year and I would say for the most part, Dad is now doing much better. Of course we all know how LBD can fluctuate and you just never know what’s going to happen. Despite the unknown, the Hubs and I made plans to move East and make Boston our home. I wrote about some of this on my personal blog but I’ll re-post some of it here, because really, it’s just easier.

“After much deliberation and taking into account my Dad’s health situation, it just made sense to make Boston our home. In an ideal world, Mom & Dad will sell the California house and return to Boston to be closer to family, friends, good hospitals and doctors. The market being what it is right now, the move for them might have to wait, but hopefully good fortune will be upon them and things will move along sooner rather than later. The hubs and I spent 14 months living with Mom and Dad to help caregive but the time had come for the Hubs and I to get back to us. As hard as it was to say goodbye and the stress and worry if they’re going to be okay can be overwhelming at times, we take comfort in knowing we’ll always be there for my parents- no matter the distance or any obstacles. I thank my lucky stars that I have married a special man that has the patience, respect and good nature to deal with such a difficult situation and all that it entails… but that’s a post for another time.”

Sister has been staying with Mom & Dad for the summer to help out while we’re gone but soon the school year will resume and she’ll be heading back to NYC shortly. I’m sure once she’s gone Mom is going to be in for some tough times ahead without anyone directly around her to help. I imagine she may be lonely, stressed, feel like the weight of the world is upon her and as if she’s going at this all alone. Even though she’s not, I can’t begin to imagine what it’s like for a spouse to see their beloved succumb to this terrible disease and to shoulder the burden of all that comes with it. We’ll all take things one day at a time and hopefully she can develop a routine that works for her and Dad. Sister and I will be calling every day, several times a day and will be there to help in any way possible. It will be a bit of an adjustment for myself in providing long distance caregiving but I know every little bit helps- and just knowing someone is in your corner is a source of comfort. Now that us kids will all be on the East Coast, I’m hoping Mom & Dad will be able to get out to Boston very soon. How soon depends on the finances and either selling the house or renting it, which during these times, is a bit difficult. Mom understandably doesn’t want to sell right now with the market prices being so low. Mom needs to sell at a higher price as she’ll need that money to pay off the house, move to Boston, rent or purchase something in Boston and ultimately, have some money left over to live on and pay for some of Dad’s medical expenses. At this time, it feels like a bit of a pipe dream.

Added to the stress of finances and selling the home is Dad being a bit resistant to leaving California. I think once Dad realizes it’s just him and Mom all alone, he’ll come around a bit as he’ll want to be near his kids. As much as Dad doesn’t want to leave California, it just makes sense- if not for my Mom’s own sanity. Being in Boston, Mom will have her kids close by, as well as, all her siblings and extended family. Having that kind of support so close will prove to be invaluable and allow her the opportunity to take a break, visit with family and so forth. It will also be good for Dad because he so enjoys seeing the family, too. I think being around friendly, familiar faces will help stimulate his daily functioning and give him something to look forward to- family birthdays, BBQs, watching the Red Sox and Patriots games with his brother-in-laws, etc. He’ll also only be a drive away from being able to see his own Sisters and their family and I know he would love that more than anything. However, something at the back of my mind is that a move East could also prove disorienting for Dad and send him downward. Those with cognitive and memory impairment tend not to do well with change. However, hopefully being back in Beantown where he and Mom spent most of their lives together and being surrounded by family and friends will help ease him in to the transition. Obviously, the sooner they move, the better- especially while Dad is still doing relatively well. If only we could win the lottery, right?

So, that’s where things stand for now. At the beginning of this month, the Hubs and I packed up our belongings in California and left the majority of it in storage. We loaded up the car with a few suitcases and drove across country. We are currently renting a furnished unit month-to-month while we search for our first home to purchase- hopefully before the winter sets in. Once we buy and are ready to move in, we’ll head back to California to pick up our belongings and once again, set out across country. It will also give us another opportunity to head back to Mom & Dad’s for a bit.

As you can see there was a lot going on between packing, preparing for the move to Boston, helping out at home and the normal every day things. There’s also more to it… but I’ll save that for another entry to come soon.

Read Full Post »

She’s Here!

Sister arrived today after holidaying in New Zealand. When Sister arrived at the front door, Dad was crying tears of joy… he was so happy to see her. So was Puppy… she went crazy with excitement. Needless to say, the rest of us are all thrilled to have her home, too. It’s so nice to have the entire family together again.

Read Full Post »

So Far So Good

Things are still going well sans Mum. We’ve been busy running errands, going to happy hour at a fantastic outdoor restaurant and Dad and I even went shoe shopping- at his request. Got to love a Dad that wants to go shoe shopping with his daughter, ha! The Hubs, Dad & I also went to the movies to see Star Trek. It wasn’t my first pick but the men outnumbered me. The movie was bearable for me whereas Dad and the Hubs really liked it.

I asked Dad if he wanted to go to a local baseball game but he wasn’t as keen on the idea. It might have something to do with the Red Sox being on TV or he just doesn’t care- either way, it was fine by me.

This week has been going by fast without Mom, which I guess is a good thing. Although, I feel like Mom could have stayed away longer. She was so worried about being away and the problems that might ensue but really, Dad has surprisingly done well without her. I think this experience bodes well for the next time. That said, I’m sure Dad will definitely want to travel with Mom on the next getaway. He was talking just the other day about wanting to fly to a family wedding in August to see his Sisters and extended family. If he stays “good” we might be able to give flying a go.

I’d have to say, the only things that have been difficult with Dad is getting him to bed at night, dealing with his OCD and stubborn tendencies and some of Dad’s night time delusions. First, Dad refuses to go to bed before 11:30pm- he has to watch the late night news. Around 2am after he gets dressed and futs around doing this and that, he’s finally ready for bed. However, I can’t go to sleep until he’s ready because we have to say prayers together. I do enjoy sharing this moment with Dad, however, I just wish it could happen a lot earlier in the evening! Then there are Dad’s OCD tendacies and his major stubborness that just drive me batty and have me testing my patience. For the most part, I’ve kept my cool this week. Finally, for some reason Dad has these weird delusions about the Hubs which flare up at bedtime nearly every night. They eventually lead to Dad chasing down the Hubs, ready to fight him or yell at him. A sampling of his nightly delusions include the Hubs stealing Dad’s Dog, the light blowing out and it’s the Hubs fault, the neighbors yelling at Dad because Paul has the TV too loud (the TV is set low and we have no neighbors), the Hubs blasting Dad’s ears out with an imaginary generator and so forth. Nearly every other night, I’m chasing after Dad as he’s ready to go after the Hubs for something or other. There’s just no rationalizing with Dad and we have to give him time to cool off. Like I said, it only lasts for a few minutes and things settle down, so luckily things are relatively manageable. Really, bedtime is the only “painful” time for us in terms of Lewy acting up so we can handle it for now.

Just a few more days and Mom comes home!

Read Full Post »