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.

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.

Happy Veterans Day

Thanks to all those who have served and currently serve in the military.

Thanks, Dad, for your years of service in the Navy… we love you!

Does Your Loved One Have Parkinson’s Disease?

Save the date to join the Parkinson’s Disease Foundation (PDF), online or by phone, on Tuesday, November 17, at 1 p.m. ET for an educational webinar, “How to Take Care of the Parkinson’s Caregiver,” with Barbara Habermann, Ph.D., R.N., associate professor, Department of Family Health Nursing at Indiana University School of Nursing. This FREE 60-minute PD Expert Briefing is part of PDF’s recognition of National Family Caregivers Month.

Many people often say that Parkinson’s affects more than the person living with the disease – it affects the entire family. Care partners – whether they are a spouse, a child, a parent or a friend – can experience significant life changes when caring for a loved one living with PD.

Dr. Habermann will explore common emotional responses that Parkinson’s care partners may experience. She will also identify signs of depression in the person with Parkinson’s and the care partner, point to specific areas where the partner may require help or assistance and let participants know about resources available to care partners.

How to Take Care of the Caregiver will be presented both as a webinar (web-based seminar) – where participants can watch a slideshow presentation online and hear an audio presentation either through their computer’s speakers or by calling a toll-free number – and as an audio-only presentation – for those who prefer to listen in by calling the toll-free number.

Participants joining the live session will have the opportunity to directly ask Dr. Habermann their own questions during the last 20-30 minutes of the presentation. This PD ExpertBriefing will also be available on the PDF website for up to one year after the live event.

For more information about this session, click here or call 800/457-6676. To register now, click here.

Info take from PDF’s site.

Learn How to Prevent Medication Mishaps: Join the National Family Caregivers Association’s Free Teleclass

November is National Family Caregivers Month. It is organized annually by the National Family Caregivers Association (NFCA) as a time each year to thank, support, educate and empower family caregivers.

In celebration of National Family Caregivers Month November 2009, the National Family Caregivers Association is once again offering a FREE teleclass/webinar to family caregivers across the country. “Safe & Sound: How to Prevent Medication Mishaps” will be offered on Thursday, November 12, at 2 p.m. EST.

This FREE teleclass/webinar will help you understand when medication problems are most likely to occur and what you can do to prevent them. There are approximately 100,000 deaths each year due to adverse drug reactions. This teleclass/webinar will give you the tools you need to minimize the possibility that you or your loved one will experience an adverse medication event.

You Will Get Answers to These Questions:

• Why should I learn how to prevent medication errors and events
• When are medication problems most likely to occur
• What can I do to minimize risks associated with medications
• How can I help my loved one be more adherent to medication regimens
• How can I prevent medication problems at the hospital
• How can I prevent medication problems at the doctor’s office
• How can I use my community pharmacist as a resource

Sign up for Safe and Sound: How to Prevent Medication Mishaps, today – and please pass this along to your family and friends. Click here to register now. You can participate for FREE by telephone or online.

Happy Halloween

Trick O’ Treat!

Daylight savings ends on the first Sunday of November so don’t forget to turn your clocks back one hour when you go to sleep tonight. It’s also a good time to check your smoke alarms and make sure they’re still working.

Celebrating Three Years… Or Five

Today my Husband and I are celebrating our three year wedding anniversary. After talking with Dad, he has informed us that we’re wrong and it’s our five year wedding anniversary. At first I was trying to correct him but there was no reasoning with him. I just went with it and said yeah, married three and engaged for over two years so it’s around 5 years. I then segued into talking about the wedding and how much fun we all had and the various memories from the day.

Lately we’ve all been noticing Dad is having difficulty with processing time, events and dates. He’s having trouble remembering people’s specific ages, anniversary years, special dates, etc. Or, if something like a baseball game is supposed to be on TV but then gets rained out, he gets so upset and thinks we’re being mean and we’re keeping him from watching the game. He doesn’t understand that there’s no game on or there’s a few days break between the start of the World Series, or, they don’t always show the New England Patriot games on the West Coast. If he’s expecting it to be on the tele and it’s not, all hell breaks loose.

We’ve decided it’s best to write down events and important dates on the calendar so he can check it out for himself. It works sometimes and other times it doesn’t. If he has it in his head that something is supposed to happen and it does not, he gets angry regardless of what anyone or the calendar says. And, he still doesn’t believe the calendar when it says, ‘Husband’s 31st birthday’. He knows it’s Husband’s birthday but we’re wrong again, he’s only 29. In all, it’s one of those things where you pick your battles and you just go with it. Who doesn’t want to be 29, again!

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.

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.

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.

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.

World Alzheimer’s Day

Today is World Alzheimer’s Day- a day when the Alzheimer’s Association and other organizations around the globe unite efforts to raise awareness about the disease and its impact on families, communities and nations.

Here are some facts to consider:

• According to the 2009 World Alzheimer’s Report, newly released today from Alzheimer’s Disease International (ADI), there are 35 million people with Alzheimer’s or another dementia.
• There are 5.3 million Americans with Alzheimer’s.
• There are 10 million Alzheimer caregivers.
• Every 70 seconds, someone in the US develops Alzheimer’s.
• There are 78 million US baby boomers who will be impacted by Alzheimer’s disease.
• The annual societal cost to our nation is $148 billion.
• Worldwide, the economic cost of dementia has been estimated as $315 billion annually.
• The US government only invests a meager $428 million dollars in Alzheimer research as compared to $6 billion for cancer, $4 billion for heart disease and $3 billion HIV/AIDS that has resulted in great advances.

Here are some ways you can help:

• Consider making a donation to the Alzheimer’s Association today. You can donate by clicking here. Your gift will help the Alzheimer’s Association fulfill its mission against Alzheimer’s disease through the advancement of research, the promotion of brain health and providing care and support services to the estimated 5 million people in America living with Alzheimer’s disease.
• You can also write Congress now and urge them to support the Alzheimer’s Breakthrough Act of 2009. It takes just a minute to help. Click here to take action.
• September and October is also prime time for the Alzheimer’s Association Memory Walk. The Memory Walk is the nation’s largest event to raise awareness and funds for Alzheimer care, support and research – and it calls on people of all ages to take action in the fight. Year-round, participants are involved in efforts to help defeat this devastating disease. To find a walk near you, click here and find out more information, sign up, donate or volunteer. Get out there and walk!
• To read more about the report released today, click here.

*Content for this entry taken from the Alzheimer’s Association website.