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Archive for November, 2008

We survived Thanksgiving!

Dad wasn’t thrilled we were having company for dinner because that meant he would have to be on his best behavior. All things considered, he was okay. Dad had a bit of an incident with Mom right before dinner and he “disappeared” the entire time our guests were here leading up to dinner. However, once the food was ready, he came out and we all had a lovely meal. Dad even contributed to the conversation which was nice to see him engaged again. Dad always does well in the evening, which is when we scheduled Thanksgiving dinner. Mornings and afternoons are his worst times and behaviors. It’s like he has a case of reversed sundowning. Dad even had a few sips of wine which he definitely enjoyed and then wanted more. Unfortunately, Dad’s medications don’t allow for alcohol but since it was a special occasion, a few sips never hurt anyone.

The rest of the long weekend wasn’t too good for Dad as he was quite the handful and tensions all around were high. Despite the every day challenges, Dad was able to squeeze in going to a show at the local theatre. Sister, Husband and I managed to escape for a few hours to do a little Christmas shopping. We even managed to string up some outdoor Christmas lights and decorated the Christmas tree. Now, Sister is on her way back to NYC and the countdown to Christmas has begun.

I hope everyone had a pleasant and safe Thanksgiving.

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Sister arrived last night from NYC. After a very late night and an early start we are tired but ready to cook. We are preparing a feast and will be having our next door neighbors over for dinner. I’m a little concerned with how Dad will be as he hasn’t been himself in a long time- not to mention he has to take his “Jesus nap” in the late afternoon. I just hope he will awake from his “nap” without any issues and be able to enjoy our company and dinner.

On a slightly different note, it’s been four years since Husband and I have had a Thanksgiving in the US. We’re especially thankful to be together with family on this holiday- not to mention, actually enjoy a homemade Turkey dinner with all the proper fixings. (Turkey is not relatively common in Australia and of course, OZ doesn’t celebrate Thanksgiving. Trust me, I was asked this question by a lot by Americans)

On this Thanksgiving, I am thankful for many things but some of the things at the top of my list include:

My family (including the Hubby),

Love,

Hope,

Courage,

Strength,

Compassion,

Warm, fuzzy moments,

The simple things,

Good days,

Lasting memories,

Caregivers,

Doctors,

Medicine

and

Medical research

I wish everyone a very Happy Thanksgiving. Despite what we face, there is still so much we can give thanks for in our lives. Thank you to all my readers who continue to follow along with our journey and for your kinds words of comfort and wisdom. Thank you for sharing, caring, laughing and crying with me.

May you and yours have a safe and memorable Thanksgiving.

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I don’t know any other way to put it politely so I’ll just say it. Dad has been rather painful and difficult to deal with lately. Although he’s somewhat manageable and is definitely better than his past catatonic or combative days, he is quite the handful and we are all pretty stressed out.

Dad has developed some difficult side effects or new symptoms- I don’t quite know what they are. He seems to be suffering from Obsessive Compulsive Disorder, OCD, and is extremely ritualistic about EVERYTHING. He’s so repetitive about everything… every. single. day. Here’s a small sampling of what we deal with on a regular basis: His belt buckle and watch band must be on the fourth hole. He must always start every task with his right foot. He washes his hands seven times and then recites the same speech about the timing of the day. He has to kiss us goodnight exactly seven times before he can go to bed. He must have his food served exactly the way he specifies and it must be placed on his table in it’s designated spot. He insists on us taking his dishes to the sink for him. Every night at 9:30pm he must have vanilla ice cream in a plastic dish with a metal spoon. He must take his pills with a glass cup, not plastic and can only consume them in his chair- no where else. He has to get dressed a certain way and will only wear certain clothes. He has to clean the bedroom toilet five times before he can to go bed at night. He takes over two hours to go to bed because he has all these rituals he must go through before it’s okay to sleep. It goes on and on…  These are all relatively harmless so we put up with it despite it’s extremely frustrating.

However, we’re struggling greatly with his religious delusions. He thinks God is constantly talking to him and must ask God for permission to do the simplest tasks. For example, if we ask Dad to take his shoes to the bedroom he has to ask God what he thinks. God apparently commands him to take a “nap” every day between the hours of 2-4pm because that is the window of time that God opens up Heaven. Instead of taking a nap to recharge his brain, God commands him to lay in bed, posed as Jesus on the cross, for two hours. I mean it. His arms are straight out to the side and his leg slightly drawn upward- just like on the cross. He maintains this pose for hours. I really don’t know how he does it. Lately Dad has become more confused and I’m convinced it’s because he’s no longer napping- he’s exhausted from trying to hold his “Jesus” pose. He also says Jesus commands him to not use the toilet which completely infuriates us. We are constantly showering and cleaning him as well as doing laundry. He will no longer wear the colors black, brown, dark blue, blue or red because if you wear them God will command you to die. Every morning he raises his cereal bowl up in to the air like it’s being blessed because God commands it. Despite trying to tell him it’s just a plastic bowl, he maintains that it is a holy challis being blessed by God. Before he can sit in his recliner, he must bless the entire room and bless himself seven times. As you can see, we have our hands full and it’s quite frustrating.

Dad is also incredibly dependent on Mom. He wants only her to do everything for him. Every morning he screams for her to come get him out of bed. Now, he’s perfectly capable of getting himself out of bed, he just chooses not to do it without Mom there. According to him, Mom must shower and dress him, give him his pills and his lunch. He wants her and only her. I help with Dad’s daily care and even though I’m there helping him, he’ll still be screaming for Mom to do it all. There’s just no getting through to him.

He has such a one track mind now in terms of only being able to concentrate on one task. If he wants to do something, it must be done immediately and in the manner that he wants. For example, if he gets in his head that it’s time to pick up the mail he wants to do it right away and can’t focus on anything until it’s done. He also doesn’t want to go it alone so even though I’m busy doing something he’ll badger and nag to get the mail until I drop everything and go with him. If we’re lucky enough for Dad to be able to go out and run errands with us, we have to schedule it around his 2pm “prayer” time. If we’re out and it’s almost 2pm he’ll practically throw a fit to get home and no matter how much we discuss that we’re not done running errands, he’ll be so fixated on getting home by 2pm (for his Jesus pose) that we can’t say or do anything to change his frame of mind. It’s also like he can’t distinguish between reality and perception. We can’t figure out how to bring him back in to reality… to realize the difference between right and wrong what is real and what is not.

No matter what we try- whether we go along with his OCD and delusions, try to fight them or try to reason with them- nothing works. We are getting to our wits end, especially with the religious delusions. I know all these difficult behaviors are because of Dad’s disease- it’s not him- but it’s still hard to manage and accept daily. Dad denies there are any problems. He laughs it off which I take to mean, he knows there’s a problem, he’s just embarrassed about it and can’t do anything about it. The whole thing is just bizarre because Dad was doing much better for a while and then all of sudden the OCD and overzealous God speak started. I know Dad has no control over his behavior but sometimes I wonder if he can control some aspects of it- if he can minimize the extent of his new symptoms. Deep down I know he can’t because my old Dad would never act in these ways. It just seems so unreal that one person can behave in such a manner but then again, LBD is such a rollercoaster that I think anything is possible. All I know is everything is frustrating and challenging these days despite there being three of us here to care for Dad. We are stressed out to the hills.

The Doctor has increased Dad’s Seroquel to see if that will help with the delusions; so far I’d say it hasn’t. Maybe it’s even made it worse? If that doesn’t work, then the doctor is going to try increasing his Lexapro. I’m doubtful that either will make a difference but hopefully I’ll be proved wrong.

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I recently wrote the below article for DivineCaroline. I figure every little bit helps to spread awareness about Lewy Body Dementia and National Family Caregivers Month. Unfortunately, DivineCaroline removed my LBD links I originally included within the article. Hopefully people will still go online to learn about it. Here’s the article:

Care For The Family Caregivers

Earlier this year, my father was diagnosed with Lewy Body Dementia. As the disease progresses, my mother struggles more and more to care for him. Dad, who used to be fiercely independent, now relies upon her for nearly everything. Everyday, mom helps dad get out of bed, bathe, and dress. She prepares all of his meals, takes him to doctor visits, and administers his medication—all while balancing work demands and other everyday responsibilities. As dad’s intellectual and physical abilities continue to deteriorate, his caregiving promises to become even more exhausting and frustrating.

Every year, over 50 million unpaid family caregivers across the country provide care for chronically ill, aged, or disabled spouses, parents, other family members or friends. Chances are you have a friend or family member like my mom, struggling to care for a family member in need. To honor and recognize those selfless caregivers as well as educate the public about caregiving, November has been declared National Family Caregivers Month. Please take this time to recognize the hard work and sacrifice of those family caregivers in your life.

Here are a few easy ways to show appreciation and support:

Recognition
During the course of caregiving, there are times when the caregiver experiences feelings of isolation and loneliness. Letting the caregiver know you are thinking of them can make a significant difference in their overall well-being. Simply asking the caregiver how they are doing will let them know you care about them. A friendly visit or a phone call can lighten the caregiver’s spirits. Sending a card, flowers, or a gift basket will improve the caregiver’s day.

Time
Caregivers need time off from their caregiving responsibilities to relieve stress and prevent burnout. Offering a few hours of your time to stay with the caregiver’s loved one will provide respite and give the caregiver time to re-energize. If the caregiver has children, offer to be backup childcare or provide carpooling when needed. Bringing dinner, running errands or providing transportation to an appointment will give the caregiver a break from the daily run around. Helping with household chores the caregiver may find difficult or time consuming will give them more time to relax.

Thoughtful Gestures
Acts of kindness can have a positive impact on the caregiver and provide great assistance. Sending a gift certificate for their favorite take-out restaurant, the grocery store, or drug store can help ease the caregiver’s financial strains. Soothing music or an interesting novel can help the caregiver reduce their stress levels and sleep better at night. If you’re creative or crafty, consider giving something personal like a hand written poem, painting, or knitting an afghan.

If you have a friend or family member who is currently a caregiver, take this opportunity to recognize their efforts and give them a break from the stress and strains that come with providing care.

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The Lewy Body Dementia Association (LBDA) has kicked off it’s annual fundraising campaign, ‘Friends Asking Friends’, in which it aims to raise money to fund the LBDA and its programs, research and services while raising awareness about the disease.

Please consider making a donation today by clicking HERE.

You can also ask your friends and family to help those affected by the Lewy Body Dementias. Contact them via email or mail and ask them to make a gift to the LBDA. You can click HERE for sample letters and emails for use in contacting your loved ones. You can also sign up for return envelopes to be sent to you by using the request form found on the page. Click HERE for the electronic request.

Please, you have the power to make a difference in helping those affected by LBD. Consider making a donation to the LBDA, today, or contact your family and friends and ask them to donate.

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We voted! Dad was excited to vote but this time we opted for vote by mail. We all thought it would be easier to vote at home and go over each prop separately so he can take his time and not feel rushed. He completed his ballot and off we went to drop it off. He was a little confused about the drop off because he thought we should be putting stamps on our ballots but we were just dropping them off, not mailing them. After much convincing, it was decided everything was okay and we moved on.

We were pretty much glued to the TV, watching the election coverage all day. We are happy to have witnessed and participated in such a historic election. The road ahead will be long and hard but we all believe America took a step in the right direction tonight. Most of all, Dad seemed to be alert and in to all of the election coverage.

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November is National Caregivers Month which is organized by the National Family Caregivers Association (NFCA). The month is dedicated as a time to thank, encourage, educate and support family caregivers. Each year there is a theme and this year the NFCA is encouraging people to speak up. The effort is concentrating on teaching caregivers how to effectively communicate with healthcare professionals. The ultimate goal being that caregivers become better advocates for their loved ones and themselves.

In honor of National Family Caregivers Month and NFCA’s 15th Anniversary, NFCA is hosting a free Family Caregiver Teleclass. There will be two, one-hour sessions available by phone and the web.

Here’s what you’ll learn:

Part 1: November 6

  • Develop a basic understanding of how the U.S. healthcare system operates
  • Understand your role on your loved one’s healthcare team
  • Describe how good communication can facilitate optimum health care
  • Know how to prepare for doctor office visits

Part 2: November 13

  • Develop strategies to establish rapport/collaborate with your loved one’s healthcare providers
  • Distinguish between different styles of communicating with healthcare professionals
  • Compose assertive messages for communicating in healthcare situations
  • Be prepared for and cope with an emergency room visit

Here are the details:

When: Thursdays – November 6 and 13 at 2 p.m. Eastern time.
How: Register Today by clicking HERE.

More information on the FREE National TeleClass is available HERE.

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