Archive for September, 2008

The following information has been shared with me from other caregivers within the LBD community so I thought I would put this out there for others.

The link below holds information about a program run by Jim and Helen Whitworth of Arizona. Jim is a co-founder of the LBDA and a former caregiver. Helen, his wife, is an experienced healthcare professional.

Together, they have put together a presentation entitled, “Riding the Rollercoaster with the Lewy Body Dementias.” The purpose of the program is aimed at educating healthcare professionals, assisted living facilities and anyone else who wants to learn about the Lewy Body Dementias: Dementia with Lewy Bodies (DLB) and Parkinson’s Dementia With Lewy Bodies (PDD).

Click HERE for more information on the presentation.

Many thanks to Jim and Helen Whitworth for continuing their work to educate others about this disease.


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Last Words, Of Sorts

I realize the blog has been a bit of a downer lately and I’m really hoping that will change soon, but, it reflects what we are going through at this time. I wish I could say things were getting better, but they haven’t been. This disease is so tiring and constantly toys with our emotions.

In the few lucid moments Dad has had, lately, he seems to be imparting with us his last words, of sorts. It’s as if he knows those good moments are far and few between these days. Dad wants to tell us how much he loves us as tears roll down his face. Usually I say, “We love you, too” and give him a kiss in an attempt to stop the sadness that seems to consume him, but lately, I’ve been welcoming those sweet words. I found the most touching to be, “The best things I ever did in my life was to marry your mother and to have you and your sister.” He just wants to tell each of us, “that you are the most beautiful girl in the world and I loved you from the first moment I saw you.” He says this over and over again. At first I was like, okay, Dad… I get it. Now, I just roll with it and let him speak his mind. I embrace those endearing words because when the day comes that he’ll never be able to say them again, I know I’ll be wishing he could say it just one more time.

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This past weekend was a really tough one for Dad. He was not reacting well at all to a change in his medication, or so we think. Because Dad has been so tired and sleepy lately, one of his doctors recommended reducing his seroquel to half of what he takes now. At first it seemed okay, no real difference, but slowly he started changing for the worse. He had numerous issues some being: that he was experiencing terrible hallucinations; we couldn’t get him out of bed; he was aggressive and combative; he refused to take any medications; and so forth. It was hard for all of us but especially hard on Mom.

During our struggles, frustrations were expressed. I sometimes wonder if Dad recalls any of these moments. I’d like to think that he doesn’t as at times the stress can be just too much and anger rears it’s ugly head or tears are shed. I hate to think that any of this would make his mental psyche worse than what it already is. We usually always keep our cool but there are just some times when it all gets to be too much and you just loose it. You can’t help it. You just break down. I can’t help but feel bad and guilty for not keeping it together. It’s not Dad’s fault… It’s the disease. I like to think that we are strong but I guess everyone has their breaking point at some time or another. I just feel bad.

When Dad has his bad “episodes” and when he finally comes to, I ask if he remembers what has happened to him over the past few days. More times than not, he does not recall anything. Whether or not he really does not remember or he chooses to overlook what has transpired, I don’t know? He says he is unaware of any of the troubles he had or we have experienced during his episodes. Yet, during his episodes when he snaps out of it for a brief moment, he’ll apologize, “I’m so sorry,” over and over again. I think he knows something bad has happened or that we are distraught, just not to the degree that it really is. I think, slowly, Dad is realizing more and more that he is not well. He’s been in a sort of denial but I think he’s truly starting to feel the affects of this disease.

I often wonder what goes on in his head when he’s in his episodes. Does he know what he’s doing? Does he have any control? Can he understand what we’re saying? Can he snap himself out of it? Is this part of the disease, or, is he just whacked out on all the medication he’s taking? I’m sure trying to balance his meds regiment is part of the problem but another part of me wonders if he’s progressing further in the disease or this is just the lewy roller coaster that we have to learn to accept. Unfortunately, these are probably questions I’ll never have answers to.

For now, we’ve put Dad back on the full dose of Seroquel and it seems to be making a difference.

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This past weekend, it sort of hit me that Dad could have died from his embolism. I don’t know why it’s sinking in now. I guess I was just thinking about life and how it can change in an instant.

Let me preface what I’m about to say that the following could sound heartless or be taken the wrong way, but I don’t intend for that to be the case. I think perhaps one not familiar with Lewy Body Dementia might not even be able to understand our position until you’re in the same Lewy shoes.

Sometimes I think with everything we’re dealing with that if Dad had died from the pulmonary embolism it would have been a blessing in disguise. As much as I would have been absolutely devastated to see Dad pass on and not have been able to say goodbye, I can’t help but think that it would have been a much easier way to go rather than suffer through the cruel fate ahead of us. In a way Dad would have been spared the long, painful decline of Lewy Body… really, the hell that is LBD for all of us. Don’t get me wrong, I LOVE Dad with every ounce of my heart and soul. I’m thankful he is still alive and able to love us, laugh with us and spend time with us. It just pains me to see what this vile disease is doing to Dad.  

But then again, when Dad is experiencing a good day, I cherish those moments and the memories made. Every time he smiles, every time he says he loves us, every hug and kiss… those small actions make it worth the struggles. It gives us hope. But lately there are more bad days that diminish our hopes. When Dad is absolutely horrible, it just pains me to know things will only get worse when it already seems to be the worst. The suffering, the heartache- sometimes it’s just all too much to handle. To watch sweet Dad wither away farther and farther in to oblivion is difficult to see. I dread the day when he’ll no longer fully recognize us… when Dad is no longer the Dad I once knew. I can already feel my heart start to break.  

Facing the reality of death has me thinking a lot these days. What do you say to someone who is slowly dying? How can I say it? I feel like I have so much to talk about with Dad, questions to asks, love to proclaim and yet I don’t know what to say or how to say it. It’s a weird feeling to have because Dad and I have always had a close, open relationship. In fact, our family has always been a very tight-knit, loving family and so saying, “I love you” is a constant. We’ve always had a home filled with kisses, hugs and support.

Maybe I can’t relay my feelings because in a ways it’s like making peace with Dad… saying goodbye in a way. I tell him every day, over and over again, how much I love him, how he’s the best Dad in the world and thank him for everything he has done for me. Still, I feel like I have so much more to say yet I don’t know what it is. I just can’t figure it out. It’s like saying the last words to someone and not knowing what to say.

Dad has made it through his embolism and so we focus on trying to keep him healthy, balancing his medications and enjoying the little things as a family. As much as there is so much sadness and grieving for what we are going through and what we are losing, we remain strong together because we have to… we need to. Mom knows she can’t do it by herself as much as she tries. Mom being Mom wears most of the burden of Dad’s illness and she tries to shelter us “kids” from the harsh realities of the daily living with Lewy Body. However, it is too much to handle for one. It’s too much to handle for all of us but we try to make it through, one day at a time.

Every day I will continue to show and tell Dad how much I love him. I’ll enjoy the little moments together and the small tokens of love expressed. Maybe one day, hopefully while he’s still coherent, I will find those elusive words that I want to tell Dad. Then again, perhaps words aren’t always necessary when you have the love of your family. Just opening your heart will show your true feelings and maybe that’s what really matters… knowing and feeling you’re loved. That and the memories you can still share and make together.

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Mom and I took Dad to his doctor’s appointment on Friday. Things went pretty well and Dad spoke a little with the doctor which was good. He asked the doctor how he was doing and overall, she said he was doing fine. She wants him to get out of bed earlier and remain active- not only for his Lewy Body Disease but also for his blood clot. And of course, she wants him to eat more and more. Dad is so bony and skinny. I don’t remember him ever looking this thin. When I look at pictures of him from just a year ago, it’s like he’s a totally different person. It’s amazing how things can turn in just one year.  In the end, the Doctor recommended reducing his Seroquel to just 50mg at night and see how that goes for a week. Hopefully it will make a difference in helping him to get up in the morning.

I have to tell you, when Dad has a doctor’s appointment the family goes along, too. It might seem weird to some and I think probably bizarre to the doctors, but I have my reasons why we do it. I like to believe when we go to an appointment as a family, it helps better Dad’s care with the doctors. I like to think instead of the doctors seeing a sick, old man that they see a gentleman that has a “young” family with two 20-something daughters (okay, I’m 30 now… but just barely) and therefore they’ll want to help Dad more. It’s like seeing that Dad has “young” kids will make the doctors believe that he’s not just an old, frail, dementia patient. It’s like we want to humanize Dad and not have him be just another clinical case for the doctors. I just feel when people and even doctors and nurses know your loved one has dementia, it’s like it’s a hopeless case so really, why bother that much. No medicines are going to cure the condition so it’s a bit of a lost cause, you know what I mean? Dementia = not a fair go… Have dementia turn in to Lewy Body Dementia and you’re definitely last in line in the medical community.

In times where doctors’ visits can last no more than 15 minutes, I believe any edge we can give Dad is worth whatever amount of time and effort. For what it’s worth, I choose to believe that the doctors seeing that we, as a family, are all involved with Dad’s care will inspire them to work harder for Dad, to care more for Dad and to have compassion for Dad and for all of us. Perhaps it will even help Dad stand out more from all the other patients they see day in and day out, maybe they’ll think about him more, or, even be willing to try a new drug on him that they perhaps would reserve for others. I could be completely delusional in my thinking but I do take some comfort in thinking it aids Dad in better medical attention.

Several times, when we have all been under the same roof, all five of us have gone to appointments with Dad. Mom, Sister, Husband and I have taken Dad on several occasions; sometimes because it physically took all of us to get Dad out of the house and other times because we wanted to make a difference to Dad and to the doctors. I think the doctors are often times taken aback with the entire family in their small offices but at last they have become accustomed to having the family there. In fact, I think our neurologist thinks it’s kind of comical, in a good way, and often laughs and smiles when he sees all of us. At least I know we’re working our magic on him.

I know my thinking could be completely irrational and a bit selfish on my part, but I’d like to believe that seeing Dad’s doctors as a family does in deed help Dad. In the end, I want to do whatever I can to help him and I imagine most people in the caregiving position, would want hard-working, caring doctors for their loved one.

The other reason we go as a family is to support Dad. Knowing that Dad has our constant love and support helps Dad get through each day. We don’t want him to give up. He must keep fighting for himself. He depends on us and we can’t let him down. Dad needs us and we’ll always be there for him. Having us there every step of the way- for every appointment, every new phase and whatever else comes our way, we’ll always do it together.

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Dad is just so sleepy and tired these days. He’s not getting out of bed until very late afternoon- no matter what we do. The only time we’re able to get him going in the late morning is when the speech therapist comes twice a week and that can be such a battle in itself. If he does rise earlier in the day, he ends up sneaking back to bed as soon as the therapist is out the door. At that point, he’s basically down for the rest of the day and we’ll be lucky if he’s up for dinner. It’s a constant fight every day to get him out of bed and keep him active so he’ll stay up.

We’ve asked him why he needs so much sleep and all he can say is that he’s just so tired. He says he’s not physically exhausted but more just sleepy, tired. When we try to stir Dad from bed he’ll wake up, but he won’t open his eyes. It’s like he’s trying to trick us in thinking he’s knocked out cold when in fact he’s definitely awake and just not wanting to get out of bed. If we try moving him he fights with all his might to remain in bed. Despite Dad losing heaps of weight he is still incredibly strong.

I don’t believe Dad’s tiredness is from his depression or Dad lacking the will to live anymore; however, a few reasons have crossed my mind:

  1. Perhaps he’s going through a phase?
  2. It’s because of the pharmaceutical cocktail he’s on (over-medicated?).
  3. He’s started a few new medications at the same time (Namenda and Coumadin) and perhaps they have a sleepy side effect or interact differently with the other drugs?
  4. A few drugs have been recently discontinued from his daily regiment (Lamactil and Mirtazapine) and perhaps this is the culprit?
  5. Dad could be suffering from fluctuating blood pressure.

I’m not a doctor (although I wish I was one now!) so I don’t know why this is happening, but I do know it’s not good for Dad to stay in bed all day, especially when he has a blood clot. Anyone else have any ideas or suggestions?

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