A Bit More Clarity

Mom and Dad went to see her doctor today. We are continually struggling with the fact that there is no one, clear diagnosis for Mom. It is important to understand that there is no definitive pathological test to diagnose Alzheimer’s Disease, Parkinson’s disease or most of the other things that cause dementia. The only way to know for sure what someone has it by looking at the brian postmortem.

Dementia is a very broad category but it looks like Mom falls most into the category of having Lewy Body Dementia (LBD). The Lewy Body Dementia Association says, “LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies.” You can see that this is a hard thing to figure out because Lewy Body Dementia symptoms are very much like the symptoms of Alzheimer’s and Parkinson’s.

In the end, what does this realization mean for Mom’s treatment? Not much. It will not change how Mom is treated because there are no different medications for Lewy Body dementia that we can add. The only way it helps is that it gives us greater understanding. For instance, we now know that Mom’s extreme fatigue is not caused by medication or anything we can fix, it is just part of the dementia. It explains why Mom’s cognitive functioning varies day to day and even hour to hour.

We are glad that this helps us understand the fatigue because by far the fatigue has been hardest to deal with. If we got rid of it, we could improve Mom’s quality of life substantially. We have gone bath and fourth trying to change medications and do a number of things to decrease the fatigue. Now we know that this fatigue Mom has been dealing with for seven years, even before the other symptoms started, is part of the dementia. Now we just really need to focus on how to live with it, rather than fight it. 

As anyone dealing with dementia knows though, the disease affects everyone differently and you can never really predict tomorrow, but at least this information might help.

Blessings,

Rev. Katie

Cooking Lessons

Our Thanksgiving Stuffing

For fifty years, Mom was the one who handled all of the cooking and all of the holiday preparations. She is the only person I know who can make a Thanksgiving dinner for thirty people, on her own, and have everything done to perfection and on the table at the exact same time. However, over the past three years, that has changed, and now Dad does all of the cooking and family helps out on holidays.

Mom still loves to cook though, so around the holidays we try to make sure she can make some of the things she likes. My sister has been having her over for a few weekends to bake the Thanksgiving bread together. Today Mom and Dad were cooking the stuffing together, and lets just say it was an experience.

When Mom works with my sister, all goes well. My sister is very patient, writes out everything step-by-step, works slow, is organized, and never looses her temper with Mom. She knows the correct way to help allow Mom be engaged and still do things she loves.

On the other hand, my Dad and I are the opposite of my sister. We have much less patience, less organization, and we work faster. When Mom is subjected to cooking with either one of us, it can be stressful at times. This is something we keep working on and we are glad my sister can give us a good example to follow. My first cooking lesson to help people with dementia to slow down, be organized, and be patient. 

Besides the pace and style of working together, I learned another lesson of how dementia makes it a bit harder to cook with Mom.

Following recipes has become very hard for Mom. When we have recipes that are short and well laid out, that is a big help. However the stuffing recipe today had two recipes on the back of the package and conversions based on how many servings you need to make. Not really an easy recipe to follow.

So today Dad was trying to follow the recipe, Mom was telling him he was doing it wrong, he was telling her she was doing it wrong, and I was just watching.

What we finally realized was Mom has made the same stuffing, from the same package, for fifty years, but she did not follow the recipe as it is written on the back. We did not figure out until a while into the process that Mom was not confused at all. She was remembering what she used to do and that is why the recipe did not make sense to her.

There have been other times while cooking when Mom was not remembering correctly and she would make a recipe wrong by following what she thought was right rather than following the recipe. Today was not one of those times though. How do we know when the dementia is causing a problem, or when she really remembers what she used to do if all we have is a recipe that we are supposed to follow?

My second lesson in cooking with a person with dementia is not to always assume they are wrong, even if they are not following the recipe as written.

We feel bad that the experience was stressful for both Mom and Dad today, although now we are all laughing about it. I have a feeling there will be many times like this to come in the future but hopefully our humor will outweigh the stress.

Blessings,
Rev. Katie

Bloggers Make a Difference

I have to admit, I never really paid much attention to blogs until I started thinking about writing one a year ago. Since that time I have found many wonderful resources on all different topics from bloggers all over the world. Since starting my blog, I have come in contact with many different people and it seems like I keep coming across others who are doing things to help in the cause of dementia and Alzheimer’s. Sometimes I find these people in unexpected places.

Those of you who know me know I have a thing for makeup, particularly bold colored eyeshadow. On a beauty blog which reviews such makeup (Phyrra.net), I clicked on a link to the jewelry Phyrra was wearing. Looking through the Etsy shop, I found “Wear the Lilac for Alzheimer's” jewelry.

I think it is amazing the ways people use their gifts and talents to help with a cause they feel called to support. I contacted Kelly of Whimsy Beading to find out how she thought of this fundraiser and why she is doing it. I discovered she was inspired by an author, Terry Pratchett, who announced he had early onset Alzheimer’s.

Wear the Lilac Necklace, photo from Whimsy Beading

Here is Kelly’s story of why she makes her beautiful lilac jewelry of which she donates the proceeds to the Alzheimer’s Association and the Alzheimer’s Research Trust in the UK:

“The Wear the Lilac for Alzheimer's fundraiser started in 2008, not long after Sir Terry Pratchett's announcement in March of that year that he had donated 1 million USD to the Alzheimer's Research Trust UK.

Before then, like many of Pratchett’s fans, I "wore the lilac" on May 25th as a reference to the events in the novel Night Watch. Lilacs are not common in my part of the US on May 25th, it's too hot for them to bloom. So, I started making lilac pins out of silk lilac blooms for myself and other local fans and giving them away.

After hearing of Sir Terry's donation, I wanted to do more than that. So I approached some of my online fan communities and asked if they would be interested in purchasing a lilac pin if they knew the entire proceeds of the sale would be donated to Alzheimer's research both in the US and in the UK. The fandom's reaction was very positive and so I set up the Wear the Lilac for Alzheimer's page on my paid photo hosting site.

In the first year, Wear the Lilac for Alzheimer's donated over $1,000 to the Alzheimer's Association and the Alzheimer's Research Trust UK. The next year, another $350.00 was raised. This year on May 25th 2010, $770.00 was donated and we will make a donation each May 25th thereafter.

I don't lay claim to being the first person to "wear the lilac." That honor is Sir Terry's alone. I also don't lay claim to being the only person to associate the two events - wearing a lilac blossom/clothing and showing support for Alzheimer's research. But I do lay claim to starting the Wear the Lilac for Alzheimer's fundraiser and being at the start of the "grassroots fan campaign" that hopefully has helped those suffering from Alzheimer's and their loved ones.

On a personal note, Alzheimer's has touched my life as well. At the first of this month, I lost my beloved "adopted" grandmother, a woman who has been a large part of my life to a combination of mid-stage Alzheimer's and stomach cancer. So, the work that Wear the Lilac does is in honor of not just Sir Terry (who I could never honor enough if I tried) but her.

In 2009, we made a one-off necklace to raise more funds. In 2010, I started selling the current line of "Wear the Lilac" jewelry as well as the lilac pins. I also started donating part of the proceeds from other Discworld inspired jewelry from our shop to the Wear the Lilac fundraiser.

So far, $2,200 has been raised by the Wear the Lilac charity items. Considering that it's done with a maximum of two people involved, that's pretty good. Not anywhere near a million USD, but we do what we can.”

Trevor Project Necklace, photo from Whimsy Beading

I also want to mention that she has items to support The Trevor Project which works to end suicide among LGBTQ youth by providing life-saving and life-affirming resources such as a suicide hotline for gay and questioning youth.

I will be supporting Kelly's efforts in donating to these two causes which are so important to me. 

I am seeing how the blogging community can make a difference, especially if we work together to support each other’s efforts.

If any of you know others who have fundraising or other projects going on for Alzheimer's disease, dementia, or Parkinson's disease, please let me know!

Blessings,

Rev. Katie

Dementia Is Hardest On...

Today Mom mentioned in one of our conversations, “People always say Alzheimer’s is hardest on the caregiver.” In that moment, I realized just what this often quoted statement might mean to the person with dementia. We were in the middle of talking about how often caregivers speak for their loved one and how infrequently we actually hear from the person with dementia. We said we need more support for the actual patient, and Mom came out with the statement above. I felt like Mom was minimizing how bad this disease is for her because she was taught to do so.

In my experience there are a whole lot of books and support groups for caregivers of people with Alzheimer’s and dementia, but often the actual person with dementia is left out. I hear the quote Mom said at least a few times a month. I rarely hear people say how hard this disease is on the actual person who has it.

Yes, dementia is hard on the caregiver, there is no denying that. I just worry when we focus so much on the caregiving side that we are giving the impression to our loved one that their suffering does not matter. For some this statement may also make them feel guilty, as if they are a burden on their caregivers. I don’t want Mom to have the impression that she is a burden or that her experience of how difficult this disease is is not valid. I actually felt ashamed that Mom so readily repeated this statement. Of all things I want her to remember, that statement is not my first choice.

Being a caregiver is hard now and will only get worse. However, the disease is very hard on Mom too. I can see how hard it is for her. How she is scared of the future and the fact that one day she may not know who her children or husband are. How she feels as of her life has lost it’s purpose because she is so limited in her abilities. This is the one illness she was most afraid to get because she lost her mother to Alzheimer’s. This, in many ways, is Mom’s worst nightmare become reality.

I don’t want to compare who Alzheimer’s/dementia is hardest on. It is hard on us all in different ways.

Blessings,

Rev. Katie

Knowing You Don't Know

Mom’s memory is getting worse and she is becoming more confused. Mom again today was looking for her porcelain dolls, which are at her friends house and have been there for weeks. However today Mom was sure that the dolls were still at home and we needed to take them over to her friend. Both Dad and I told her numerous times that the dolls are not here and her friend has them. Mom looks at us, confused, and says “Why can’t I figure this out?”

It is hard to watch her go through this because Mom knows she can not remember, she knows she can not understand. She will repeat back to you what you just said and yet the reality of the situation does not make sense to her. She says yes, the dolls are at her friends house, and we have to get the dolls out of the basement and take them to her friend.

This middle stage where the person with dementia knows they can’t remember is hard because you see in their eyes how much they want to remember and how frustrating it is for them to know their mind is not correct but there is nothing they can do about it.

We knew this would happen, this is the way the disease progresses. But you do not really know what it is like until you get there. In fact, when I go back and read this blog post, I realize it does not quite make sense. What actually happens to the mind with dementia is hard to explain and unless you have experienced it, you might not quite get what I am describing. It is a combination of not knowing and knowing that you don’t know. You understand that you do not understand. Mom says though that knowing she does not know something allows her to hang on to the rest of the world. In a way it is comforting to her because it shows that she still has a grasp on reality in some way.

I can see the many challenges that Mom’s worsening dementia will bring to her individually and our family as a whole and I wonder how we will handle it. Will we have the patience, the time, and the emotional strength to care for her? How will she take it when she loses this grasp she has on reality and no longer knows she does not know? There are a lot of unanswered questions in our future.

Blessings,

Rev. Katie

Lessons from "Dollhouse"

My husband and I have just finished watching both seasons of Joss Whedon’s television show “Dollhouse,” which got me thinking about how we value our memories and the fear we hold around losing them.

Dollhouse is a science fiction show about people who volunteer (for vast amounts of money) to have their memories and personality wiped away by the Rossum Corporation. After they are wiped clean, Rossum can then program them to be anything someone wants. They are able to rent these “dolls” out to wealthy clients to accomplish various assignments. When the dolls are not imprinted with memories, they walk around in a trance. After five years, their original memories are put back and they go on with their life. However, things go horribly wrong, the dolls are exploited, and the world is on the brink of collapse. The ultimate salvation in this show is to give everyone back their own memories.

The aspects of the show that were interesting from the standpoint of dementia is that the worst thing which happens to the people in the show is the exact same thing which happens with dementia. You lose your memories, and often become someone else. People’s personalities change with this disease. You may never really recognize your loved one again because they no longer act the way they used to. And eventually they end up in a “doll state” wandering aimlessly around with a blank stare. The salvation from this disease would be to get your memories back.

We can enter a world of science fiction where people’s minds are wiped clean and we hope for these people to get their memories back. We know how frightening it must be to lose everything about who you are and we think no one should have to endure that. But we do not often understand that something very similar is happening in reality every day.

It is argued in the show that the “dolls” have no idea who they are or what they lost, therefore this mind wiping is not unethical because it does not hurt them physically or emotionally. With no memories, they don’t miss what they once had. People make the same argument about advanced Alzheimer’s patients as well, that they have no idea what they have lost so they feel no grief or pain at what is going on and who they have become. I believe by making such an assumption we are minimizing and not understanding the severity of this disease. We do not know if dementia patients really have no idea what they have lost. In fact, in the television show the whole plot revolves around a few dolls, one in particular, who do remember little snippets of who they were. They know they have lost something they once had and this is profoundly agonizing for them. They can’t vocalize what they have lost, but they know something is wrong and they want to remember. How do we know this is not what advanced dementia is like?

This show, to me, represents the ultimate fear of dementia, that we are trapped in our own bodies, not really knowing who we are but feeling intense terror and grief at what we know we are missing but cannot name.

I know we do not want to describe the disease in that way, but I also know this is what many people with dementia fear the most.

Blessings,

Rev. Katie

What Will It Take?

The Alzheimer's Association Logo

What will it take for Alzheimer’s and dementia to get the attention it needs? What will it take to raise awareness and obtain funding? What will it take for purple to represent November like pink represents October for breast cancer month?

My family and I went to a program put on by The Daughter’s Club of the Alzheimer’s Association Cleveland Area Chapter tonight entitled “A Nation Responds to the Alzheimer’s Crisis.” This was a great program with speaker Robert J. Egge, the Alzheimer’s Association’s Vice President of Public Policy and Advocacy. He gave a compelling and easy to understand talk about how Alzheimer’s is a national crisis and the things we need to do to combat it. He had many great points this evening, and there are a few I would like to highlight.

First he said that we have, for too long, talked around Alzheimer’s and what the disease is like instead of being honest about what happens. He said, “Alzheimer’s disease incapacitates and then it kills.” Until people start to know the severity of the disease, they will not want to work for a cure.

He also talked about how by 2050, because of the Baby Boomer generation, Alzheimer’s disease will increase substantially. (for facts and figures, see my previous post The Future of Alzheimer’s). But, what really hit home for me is that for every one of us, if we live to be 85 years or older, we have, on average, a 42% chance of getting Alzheimer’s. That is if you have no preexisting indicators for the disease then the percentage goes up. This is a disease that affects almost half of the population who lives to be 85 or older. Do people understand that every single one of us, after age 85, has a 42% chance of getting this disease? That is a huge risk, and many of us are living well into our late 80’s.

We also saw statistics for the death rates of different diseases from 2000-2007. Death from HIV has gone down 22%, death from breast cancer has gone down 3.1%, and death from stroke has decreased by 8.9%. However, death from Alzheimer’s has INCREASED 50.6%.

And finally, for those of us who are concerned about the financial burden this disease puts on our nation, if we figured out how to just delay the onset of Alzheimer’s by 5 years, we could decrease what we spend on the disease by 50%.

These all seem like pretty compelling facts as to why we need to raise awareness and put a lot of funding into research.

Most compelling to me though is hearing the stories of people who live with dementia and the stories of how dementia affects the patients loved ones. It is a devastating  illness where the patient looses everything about who they are. They lose their memories, and often even their personality. The sweet father you once knew can become an angry, volatile man who does not recognize you anymore. People die knowing nothing of who they are or what their life was like. That’s why we need to fight to end this crisis.

I am so thankful for the Alzheimer’s Association and all the wonderful people we met this evening who are willing to work together to make a difference. It gives families like us hope and patients like my Mom the knowledge that people care about her.

What can you do right now, right this second? Sign up at HERE with the Alzheimer’s Association to be an advocate and they will send you monthly updates on how we can make a difference.

Blessings,

Rev. Katie

The Medicine Dance

This weekend we learned a new section of choreography in the medicine dance. Many of you know this dance. Where the doctors try all different kinds of medicines that are supposed to solve this or that problem, only to find they don’t work, cause more problems than good, and then they give you another medication, and another, all causing their own problems, on top of the problems you already have.

We had a rough time this weekend because Mom started a new medication which is supposed to help her sleep. Mom’s excessive fatigue during the day limits her activity to, on average, three hours a day, and the rest of the time she spends sleeping. Her doctor suggested that while extreme fatigue is common in Parkinson’s Disease, maybe we could lessen it by helping her sleep better.

Mom has REM sleep behavior disorder (RBD). REM sleep is dream sleep, and during this time your body is paralyzed except for eye movement and breathing. This is good because physically acting out your dreams would be a problem. However, many people with Parkinson’s have this RBD which means they are not paralyzed during their dreams and they act them out. Also, the content of the dreams are very similar for all patients. In these dreams a loved one is being attacked and the patient is trying to fight off the attacker. Some people while acting out these dreams hit their partner in bed and so this can cause a lot of problems. For Mom though, she mostly just talks a lot, screams out in her sleep, and spends most of the night in a state of barely conscious extreme anxiety. I remember she told me of one dream where an animal was attacking our son Jeffrey and she was trying to fight the animal off.

This means that Mom does not get a good deep sleep because of this sleep disorder. There is a medicine that can counteract RBD and the doctor thought if she gets some more restful sleep, that she might be less tired during the day. So, we tried it for a few days.

This medicine Mom took is supposed to be fast acting, supposed to be short lasting, supposed to make her less tired during the day, supposed to have her wake up well rested, and supposed to get rid of the nighttime hallucinations and dreams.

Well, it is fast acting, got rid of the hallucinations and dreams, but made Mom unstable, less able to walk, and so tired all day that she could barely get out of bed. If she did wake up she would stare off into space and barely move. She would say she was going to go get dressed, and then just sit there and stare at her coffee cup. The medication really immobilized her and made a person who is already unstable and who falls easily, unable to walk without assistance.

So, we will call the doctors again and see what they say. What the will probably say is the medicine was not supposed to do those things but medicine interacts differently with everyone. “We will try something else,” they will say. However, often this trying something else all the time just makes life more difficult and scary for us all. The whole thing is just frustrating, and very impersonal.

The dance will continue and I just hope no one falls and gets hurt.

Blessings,

Rev. Katie

November: National Alzheimer's Disease Awareness Month

Photo from Scene

Despite being relatively in contact with what is going on in the world of Alzheimer’s/dementia, I did not know until a few days ago that this month is National Alzheimer’s Awareness Month. This tells me that we defiantly need more publicity around this disease and I hope one day this month will be as recognizable as breast cancer awareness month.

So, in an effort to get more information to everyone, I have a few resources for you. There are links to these events below.

First of all, I live in the Cleveland area of Ohio so let me fill you in on what is going on here. If you drive downtown, you will notice that the top of the Terminal Tower is purple for Alzheimer’s awareness. Spread the word to your family and friends about what the color of the Terminal Tower means. Also, there is an event next Tuesday, November 9 called “A Nation Responds to the Alzheimer’s Crisis” which sounds like a great program highlighting what needs to be done to address the Alzheimer’s crisis, which I wrote about in a previous blog post.

For people who are in their 20’s and 30’s, there is an event on Thursday, December 9 at Shula’s 2 called “Party for a Purpose.” I think this is a wonderful idea because not only does it raise awareness, but it does it in a way that gets the younger generations involved. I am 31 and rarely meet people my age who have a parent with Alzheimer’s. Many people my age do not really know the details of this disease. Nor do they know that there are many things we can do now to delay the onset of dementia or even just keep our bodies and minds in the best shape possible so when we are older we do not have a multitude of health problems that make our last years or decades harder to handle. Events like this can help us care for ourselves and others better, and have compassion for people dealing with this disease.

"A Nation Responds to Alzheimer's" featuring Robert Egge, Vice President of Public Policy and Advocacy for the Alzheimer's Association Tuesday, November 9  at the Visiting Nurse Association Click here for more details and RSVP to Vicki at vicki.winner@alz.org or 216.231.1332.

Alzheimer’s Association Invites Clevelanders in their 20s & 30s to Party with Purpose Thursday, December 9 Shula’s 2 6200 Quarry Lane, Independence, 44131 Join other Clevelanders in their 20s and 30s in this swanky bar and restaurant for a festive night of appetizers, drinks and great conversation. Please bring an item to donate to a local Alzheimer’s facility. Your purposeful donations will make special holiday gifts to those in need. RSVP on Facebook or contact Sheryl Berman at sheryl.berman@alz.org or 216.231.1466.

There are other events coming up in our area throughout the year, such as the Memory Walk each October. I want to thank Sheryl Berman, the Special Events Coordinator for the Cleveland chapter of the Alzheimer's Association for giving me this information. I am sure she will keep me posted on what is going on and I will forward the information to you all.

For those of you not living in the Cleveland area, you can find out what your city is doing for National Alzheimer’s Disease Awareness Month by visiting the Alzheimer’s Association homepage and entering in your zipcode.

Together we can raise awareness, look for a cure, and help care for one another.

Blessings,

Rev. Katie