The Experience of Dementia as a Journey ~ Author Unknown

My friend, Kathy over at Living with a Thief Named Lewy is an amazing woman. Her husband has Lewy Body Dementia. Kathy blogs honestly about the good and bad of being a caregiver to someone with dementia. She has experienced all of the tough times that Lewy brings, but she also knows those amazing, special moments that are buried in the world of caregiving. It's those moments that keep a caregiver going.

Kathy recently posted this story after finding it on one of her friend's blogs. I wanted to share it here on the mountain also. A lot of people who haven't been closely affected by dementia don't understand. I think this little story does a great job of presenting what it more than likely feels like to live in a world that no longer makes sense.

The Experience of Dementia as a Journey –Author Unknown


I am going on a long journey by train. As I begin, the city skyscrapers and country landscape look familiar. As I continue my journey, the view reminds me of times gone by and I feel relaxed and comfortable. The other passengers on the train appear to be feeling the same way and I engage in pleasant conversation with them.

As the journey progresses, things begin to look different. The buildings have odd shapes and the trees don’t look quite the way I remember them. I know that they are buildings and trees, but something about them is not quite right. Maybe I’m in a different country with different architecture and plant life. It feels a bit strange, even unnerving.

I decide to ask the other passengers about the strangeness I feel, but I notice that they seem unperturbed. They are barely taking notice of the passing scenery. Maybe they have been here before. I ask some questions, but nothing seems different to them. I wonder if my mind is playing tricks on me. I decide to act as if everything looks all right, but because it does not, I have to be on my guard. This places some tension on me, but I believe I can tolerate it for the remainder of the trip. I do, however, find myself becoming so preoccupied with appearing all right that my attention is diverted from the passing scenery.

After some time, I look out the window again and this time I know that something is wrong. Everything looks strange and unfamiliar! There is no similarity to anything I can recall from the past. I must do something. I talk to the other passengers about the strangeness I feel. They look dumbfounded and when they answer, they talk in a new language. Why won’t they talk in English, I wonder? They look at me knowingly and with sympathy. I’ve got to get to the bottom of this, so I keep after them to tell me where the train is and where it is going. The only answers I get are in this strange language, and even when I talk, my words sound strange to me. Now I am truly frightened.

At this point, I figure that I have to get off this train, and find my way home. I had not bargained for this when I started. I get up to leave and bid a pleasant goodbye. I don’t get very far, though, as the other passengers stop me and take me back to my seat. It seems they want me to stay on the train whether I want to or not. I try to explain but they just talk in that strange language.

Outside the window, the scenery is getting even more frightening. Strange, inhuman-looking beings peer into the window at me. I decide to make a run for it. The other passengers are not paying much attention to me, so I slip out of my seat and quietly walk toward the back of the car. There’s a door! It is difficult to push, but I must. It begins to open and I push harder. Maybe now I will get away. Even though it looks pretty strange out there, I know I will never find my way back home if I do not get off this train. I hear the door shut. They take me back to my seat. I realize now that I will never get off this train. I will never get home.

How sad I feel. I did not say goodbye to my friends or children. As far as I know they do not know where I am. The passengers look sympathetic, but they do not know how sad I feel. maybe if they knew they would let me off the train. I stop smiling, stop eating, stop trying to talk, and avoid looking out the window. The passengers look worried. They force me to eat. It is difficult because I am too sad to be hungry.

I have no choice now. I have to go along with the passengers because they seem to know where the journey will end. Maybe they will get me there safely. I fervently wish that I had never started out on this journey, but I know I cannot go back.

He's Not Heavy, He's my Brother: How to Carry the Weight of the World on Your Shoulders

This is another repost from the now defunct blog for which I used to write. Next week I will be back with fresh posts for you. I am working on a series of posts on lessons I have learned about prayer.



Have you heard the story about the boy who was carrying his younger brother on his back when a friend said, “It must be hard carrying your brother. Surely he’s heavy.”


The boy responded, “He’s not heavy, he’s my brother!”

I imagine Jesus must say the same thing while he carries me through the tough parts of life. “She’s not heavy, she’s my sister.” Just as Jesus carries our burdens, Gal 6:2 encourages us to carry each other’s burdens. It’s an act of Christian love for us to help each other make our way through life.

I’ve had my own heavy weight to carry lately. All week it has been a struggle for me. I feel the weight of my burdens and from those I love. I have felt that the burden is being piled on me and I have cried out to God that I don’t want to continue bearing this weight.

It has felt oppressive and today I reached a point of frustration. In my car, on the highway I yelled and berated another drive because of some “fault” in his driving. Afterwards I felt defeated and small. With a huge sigh I declared to God, “I can’t do anymore.”

Still, the words from Galations haunted me. The Bible says to carry one another’s burdens and I was telling God that I couldn’t. I know that others have carried my burdens over the years and I want to be able to respond in kind.

I began to question God about why I was being asked to bear this much. Why doesn’t my load lighten and how can I continue when I am feeling worn out, tired, and frustrated?” Slowly, the light began to dawn. It always does when I slow down enough to listen to the still, small voice of God.

Once again I was trying to do it all myself. Like a three year old I was asserting “I can do it myself!” I am a strong person and can take on a lot. Sometimes I pride myself in that. At times like that I forget that my strength comes from God. He waits patiently until I finally get a clue. He gently reminds me that I can’t do it all and I don’t have to do it all. He is there to help.

He still wants me to be there for my loved ones as they deal with things that make their lives hard. He just doesn’t expect me to be there alone.

Come to me, all you who are weary and burdened and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden in light. Matthew 11:28-30

I began to write this post and as I searched in the Bible for the passages that I have quoted I felt the burdens drop away. I felt my shoulders relax and my breathing slow and calm. I knew that I had finally been able to put down the weight I carry and it felt good. I had rest for my soul.

When I got up the next day I felt refreshed despite having little sleep. I was once again ready to face the world. I knew that my cares were being carried by God and I knew that would allow me to bear other’s burdens with love and kindness.

So, as you read this I encourage you to cast your burdens on Him. Let him help you carry the weight today and all days. He is there for you and He shares the weight of your burdens. He will give you rest for your soul as you allow Him to shoulder your burdens with you.

Why is Care Giving so Hard?

Ask any family care giver and they will tell you that it is the toughest job they ever had. Talk to any care giver and you may find them to be tired, stressed out, and not asking for help. The life of a care giver is often lonely and hard. They do the job because they love their ill or elderly family member.


What is it that makes the job of family care giver so hard?


• It is a 24/7 job that can go on for years.

• Often care givers don’t think of or take care of themselves because they are so caught up in their loved one’s well being.

• Care givers sometimes have trouble asking for help from their friends and family. They don’t want to burden others.

• Not only are they responsible for the physical care of their loved one, but they also have to help them deal with the emotional aspect of their illness.

• They have to become “experts” in the health care aspects of the illness involved.

• They learn to navigate the “system” to get the benefits and care that is needed.

• Care givers have to deal with their own emotions about someone they love being sick or unable to take care of themselves.


These are just some of the aspects that make care giving a difficult job. If you’re a care giver I am sure you can add items to this list. There are similarities for all care givers, but each person’s experience is unique and that makes it challenging.

If you are not a care giver, but know someone who is you can find some hints on what you can do  in this previous post. Don’t be afraid to reach out; most people will welcome your kindness.

(this post is also being posted on my Colorado Springs Fresh Ink blog today)

8 Common Types of Dementia

Recently someone told me something as if it was new information; they apologized for not telling me sooner. This person is busy and had mentioned it to me in passing. When I gently reminded them of that they said, "You know I have dementia."


The thing is this person doesn't have dementia. They are a normal, over busy 40 something and just didn't recall telling me. It happens. I know because it happens to me. Once a friend told me, "I love that story every time you tell it."

People tend to over simplify dementia and classify it as memory loss. In reality it is much more than that. And, there are different types of dementia that present differently. Some dementia causes short term memory loss while other forms cause people to forget how to do every day things. The type and cause of dementia makes a difference in the symptoms.

Today I was sent an email that had a link to a short article on 8 different types of dementia and their differing symptoms. You can read the article here

I See People

Hallucinations are one of the hallmark symptoms of Lewy Body Dementia (LBD) and dealing with them can be one of the most frustrating parts of the disease. The hard thing about hallucinations is that LBD patients can’t be given any of the drugs that are typically used to treat the hallucinations. Most of them fall into a category of drugs call neuroleptics that can cause problems with cognition, coma, or even death. So, that leaves patients and care givers with no real recourse.

Without medications to keep the visions (the hallucinations are mainly visual, but some people do experience audible hallucinations) at bay caregivers are often left not knowing what to do for their loved ones. Much of the current literature purports the hallucinations are usually not frightening for the patient, but my experience has been that this is not always the case. Mom had extenuating circumstances in her life before Lewy came that caused the hallucinations to be more frightening for her at times. But, I have talked with caregivers whose loved ones also have fears over them.

So, if you can’t give medication to help, what can you do?

When visions encroach on life, distraction is one of the best ways to react. If you can get your loved one to think about something else even for a few minutes that is often enough for the hold to be broken and the hallucination to stop.

Some things we found useful for distraction:

• Photo albums with family, friends, vacations and other cherished memories. Point to a person or item in the picture and start the memory, “Remember when I was ten and we went to the carnival and I rode the merry go round?”

• Funny stories or information about the family, “Hey, did I tell you that I talked to Aunt Suzy today and she told me that her dog did the funnies thing.”

• Singing….yes, even if you aren’t a great singer. I can’t carry a tune in a bucket, but during hallucinations I would sometimes start singing, “Oh, I wish I was an Oscar Meyer wiener.” Just the craziness of it would be enough to break the hold.

• Well loved items that carried significance for your loved ones. These are great to start a conversation with the loved one.

The experts say you should validate what the person is experiencing, but not play along with the hallucination. Playing along can be tricky since you don’t know the details of what they are seeing and making a misstep can make the person angry. However, we found that sometimes there just wasn’t anything else we could do. Dad was known at times to stomp down the stairs, open the front door, and shout, “Get out of our house, we don’t want you here.” Then he would slam the door. It was always used as a last resort.

The key is to get them thinking about something other than what they are seeing.



Caregivers, do you have other suggestions that you have found to work for you?

What Can You Do?

For years I never really thought about care givers much. I knew people who called themselves care givers and I just kind of glossed that over. How hard could it be? You’re there anyway; what’s so hard about helping someone out?

I am not afraid to admit when I am wrong and I have to tell you I was not only wrong on that one; I was so hugely wrong it was what slang now refers to as an EPIC FAIL. You all know by now that my mom suffered from Lewy Body Dementia (LBD) for about the last ten years of her life. As the disease progressed Dad gave up much of his life in order to care for her. My sister and I who live close helped as much as possible. But, Dad is not one to ask for help from his kids easily. It goes against the way he was raised. So it was quite some time before the truth began to sink into my thick skull.

As I spent more time with my parents I began to see. When Dad had open heart surgery in the summer of 2007 I understood perfectly. Yeah, care giving is a lot of every day stuff. But it’s an added weight of responsibility. It’s keeping track of medications and doctor visits. It’s comforting and calming when the loved one’s disease rears its ugly head. It’s being available 24 hours a day.

All entwined with the day-to-day responsibilities is the emotion. Watching a loved one suffer is hard; not being able to do anything to lessen the suffering is excruciating. Sometimes I think the toll on the mental health of caregivers is harder than the physical toll.

Thomas B. Grayboys is the author of Life in the Balance; a book about being struck in the prime of his life by a couple of devastating diseases. (You can read my review of his book here) He is a physician so he is acutely aware of what he faces. But, he is also a husband who is acutely aware of how his health affects his wife. He recently made this statement, “This journey with Parkinsons/Dementia ain't no picnic. Lest you hear whining about the "why me" syndrome, look to the right and see someone worse than yourself. My first book was lean regarding spousal support. If we do a sequel, we will address this issue.” It’s a potent reminder that illness doesn’t just affect the person who has it.

Despite the hardship of care giving most any care giver will tell you that they do it willingly. They may be tired and weary, but they would never walk away from the job. When you love someone you give until you just can’t anymore.

What can you do to help a care giver?

1. Offer to help out with household chores or errands.

2. Bring meals they don’t have to prepare.

3. Stay with their loved one even for a few minutes to allow them to step back from responsibility and renew.

4. Call them just to say, “Hi, how are you doing?” But, be cognizant that it might not be the best time to talk.

5. Ask about their loved one. Be careful to talk about their loved one as a person and not a disease.

6. Learn about the disease that is affecting their loved one.

7. Be a listening ear. Sometimes there is nothing you can do to help, but listen.

8. Remember that just because they talk about problems doesn’t mean they are asking for solutions. Sometimes they just need someone to hear what they are going through.

Family Caregiver Stamp Petition

I never understood how hard being a caregiver for a family member was until I had to take over for my Dad when he had his surgery.  It can be emotionally and physically draining, but also intensely rewarding. I would like to see more attention given to family caregivers. They need all the support and encouragement they can get.

In recognition of the work family caregivers do President Obama declared November 2009 National Family Caregiver Month. Unfortunately the month is almost over. Fortunately, the appreciation can continue on.

There is currently a petition to the USPS for a Family Caregiver Postage Stamp. You can sign the petition and show your support by visiting the petition web site and submitting your information.