Archive for October, 2009

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.


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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!

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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.

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


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.

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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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